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Health Research Ethics Workshop and Community ConsultationGwen Healey

In a workshop held in November 2007, participants from around Nunavut gathered to discuss health research, ethics, and health research priorities for …

Englishᐃᓄᒃᑎᑐᑦ QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 1 Health Research Ethics Workshop and Community Consultation Rankin Inlet, NU November 13-15, 2007 Summary Notes In a workshop held in November 2007, participants from around Nunavut gathered to discuss health research, ethics, and health research priorities for Nunavut. The participants were from Iqaluit, Gjoa Haven, Rankin Inlet, Cambridge Bay, Kugaaruk, Clyde River and Ottawa, ON. I) INUIT AND COMMUNITY PERSPECTIVES ON ETHICS AND HEALTH RESEARCH Ethics Participants were given a short presentation on ethics in research and learned about five principles of ethical research: - beneficence (doing good, ensuring the research will have a benefit, - non-maleficence (doing no harm) - autonomy (the right to refuse participation) - dignity (treating participants with dignity) - truthfulness and honesty (about the nature of the research) Participants also received short fact sheets developed by Qaujigiartiit/AHRN-NU on the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples. During discussions, ‘Inuit ethics’ were discussed by participants and it is important to note that participants requested more dialogue with elders in future discussions about ethics in Nunavut. The information participants shared in this meeting will be used to inform the development of a Qaujigiartiit/AHRN-NU Ethics Checklist for communities to use when reviewing health research proposals. Recommendations for researchers: The participants at this workshop added the following recommendations for researchers coming to Nunavut: QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 2 - Researchers should consult with the community (about research questions, health topics, finding assistants, etc.), and especially elders when there is an opportunity - Researchers should provide training opportunities when they are in communities, by: o Including community members in the research through consultation with local knowledge holders or hiring local research assistants o Holding open forums and presentations in the community and/or visiting and speaking in schools. - Results should be returned to the community in a format that is useful and understandable, such as through community radio, through community presentations, posters and informative pamphlets if appropriate, etc.. Inuit-related research Participants would like information, results, and published studies that pertain to Inuit health gathered to one central location where it can be accessed by any who needs it, as the information could be used by community and territorial organizations in Nunavut. Information about research processes in Nunavut • People in communities need more information about the research process, particularly: o How projects are licensed o Who in the communities and in the territory are consulted during the development of the research project and during licensing o How to increase community involvement in the research process from start to finish II) CRITERIA AND PRIORITIES Participants in the workshop identified priorities for health and criteria for the conduct of health research in Nunavut, through a series of group exercises. Health (research) priorities A. Mental Health and Well-being • Cultural identity; cultural continuity; language loss; Rapid change and victimization • Addictions: drugs, alcohol, & gambling QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 3 • Emotional health; depression; self esteem; peer pressure; jealousy; anger; inferiority; emotional support for family care�givers and front-line workers • Healthy relationships: with family, partner, & community • Suicide and suicide prevention • Elder abuse • Sexual abuse • Spirituality • Role models: people in communities who are thriving B. Physical Well-being • Nutrition: country foods (and healthy preparation); store bought foods; reading food labels; nutrition education; portion and balance • Healthy pregnancy; prenatal care; breastfeeding • Dental health • Obesity and diabetes • Cancer • Heart health • Hand washing: germs, illnesses, & communicable diseases • Lack of physical activity (and land activities) • Overcrowding • Smoking and 2nd hand smoke • Environmental health; pollution; contaminants; sewage treatment • Food sanitation • Early childhood development C. Healthy Family Life • Healthy relationships: family, partner, & community • Elder Abuse • Overcrowding • Suicide • Addictions: drugs, alcohol, & gambling • Abuse: emotional, physical, child abuse • Teenage pregnancy; ‘Kids having kids’; lack of parenting skills; communication in families • Care for the chronically ill and disabled; long term care for the elderly • Adoption • Financial management • Self esteem • Healthy role models QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 4 D. Traditional and Spiritual Values • Traditional parenting skills • Inuit medicine incorporated with contemporary/western medicine • Traditional midwifery • Need for Inuit health professionals • Healthy pregnancy: it takes a community to support a pregnant woman • Suicide and suicide prevention • Healthy eating and traditional food preparation • Supporting and promoting food sharing • Language loss (in relation to identity) • Lifestyle: traditional and modern, the feeling of being trapped between 2 worlds, particularly for young people • Incorporating traditional knowledge into in-school curriculum E. Prevention, Education, Support and Livelihood • Prevention through education o Many illnesses or health states can be prevented through education, such as: abortion, ear infections, communicable diseases, dental problems, tobacco-related illnesses and sexually transmitted infections • Education and Support o Support initiatives that encourage community members to teach each other o Encouraging and supporting good role models • In-school Education o A Nunavut-based in-school curriculum that is relevant to northern students, meets the standards for schooling expected across Canada, and incorporates traditional knowledge. • Employment and Livelihood o Making positive contributions to the community and feeling useful o Poor retention and support of health staff has an impact on the health of communities Criteria for Research in Nunavut Participants identified important criteria for what they would like see included as a part of their vision for health research in Nunavut. QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 5 A. Equality • Community research assistants receiving credit for their contributions • Equal treatment of researchers and community knowledge holders B. Trust • Consultation with communities before the start of projects C. Results and knowledge sharing • Research results shared with and presented back to community members in a format that is visible and understandable o plain language reports; o in-school presentations; o talks on the radio, etc. D. Ethics • Territorial-level ethics review that incorporates Inuit ethics E. Community comes first • Researching a topic of importance to the community • Community members conducting the research • Researchers and community members sharing worldviews and getting to know each other • Working in partnership with the community to relieve stress for both the researchers and the community F. Participatory Action Research (PAR) • Research method that promotes o Equality in relationships o The sharing of personal stories o Pride in and ownership of what is learned/discovered II) STRENGTHS, WEAKNESSES, OPPORTUNITIES AND THREATS Strengths and weaknesses are the things that participants felt we have control over and are assets for improving the health of our communities and furthering research. Opportunities and Threats are the things that participants felt we do not have control over. Strengths are Opportunities are the assets, skills, and resources that we can use to move community�driven research forward in Nunavut; Weaknesses and Threats are the QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 6 obstacles and barriers that we must work on and overcome in order to develop the health research environment that participants would like to see in Nunavut. Strengths Opportunities - Community: community desire for healthy families and community members; and community involvement (hamlet, youth, sports, schools, wellness centre, heritage centre); understanding that the community works together, have similar goals, want to share ideas, concerns, complaints; many community-based programs such as Great Kids; our community supports, such as the people we work with and our strong family ties to loved ones - Assets: good prenatal care; some motivated front-line workers; traditional medicine; good local country food; good water; telehealth; our own knowledge, tradition and cultural practices (passed on through experience) - Skills such as interpretation, communication, presentation-making and the ability to educate by sharing knowledge - Resources, such as the internet; terminology; our languages; materials in Inuktitut and Inuinnaqtun; willingness to try new things or old ways - Knowledgeable people in our communities, such as elders, Community Health Representatives, health staff, and out-spoken motivated people with a passion - Knowledge of community history - Awareness of what needs to be addressed - *Some* funding - Patience and Perseverance - Funding - Work for graduate students - Workshops - Nurses - International Polar Year - Ecosocialism - Furthering education; education opportunities for young and old - Hope, resilience and optimism - New research to expand on existing traditional knowledge - New government-initiated programs - Internet and information sharing - Training opportunities that are located in the North - National recognition of Aboriginal rights - Access to advanced health care - Consultations with Inuit communities to promote Inuit control over lives/health/decisions - National and Territorial health promotion campaigns - Workshops including elders - Mining and job opportunities Weaknesses Threats - Funding - Local human resources: lack of local and Inuit health professionals; not enough Inuit in decision-making positions; people stretched too thin; lack of reliable staff; poor retention of health care professionals; not enough Inuit trained researchers - Infrastructure: lack of Federal - Addictions (drugs and alcohol) - Federal government funding cuts to important programs and policies - Pollution and climate change - High school drop out rate - Unsupportive resource people - Weather - Isolation (from each other, from QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 7 support/money for front line workers; infrastructure failures (buildings in poor condition, power outages, internet); not enough resources for community presentations (materials) - What we teach our young people: young people need places to go; more young people need to get involved with elders; young people need motvation - Personal health and well-being: losing loved ones; poor communication; families moving away; addictions (smoking, drinking, gambling); procrastination and laziness; selfishness; discrimination; pride; self esteem; mental health; family abuse, domestic family affairs - Resources and training: lack of training for proposal writing; lack of training for care workers at elders facility - Communication: not enough sharing of best practices - Low voter turnout - political participation, community participation in decision-making compliance (with teachings or treatments) - Lack of empowerment - Language barriers - Education: lack of formal education, low levels of education, high school dropouts - Lack of accessibility to affordable healthy foods - Lack of communication between organizations communities, from decision-makers, from territorial and federal governments) - American hegemony - Threat of nuclear war - Lack of northern education opportunities - Time - Community members not wanting to participate in healthy lifestyles - Misinformation from malicious sources (pharmaceutical companies, etc.) IV) PUBLIC HEALTH OPEN HOUSE On the last day of the meeting, a Public Health Open House was held at the Siniktarvik Hotel and Conference Centre. The Open House was open to the public and special invitations were extended to high school students. Rankin Inlet Public Health put up posters and displays and nurses and a Community Health Representative were available to answer questions and share information about a variety of health topics. In addition, they offered flu shots throughout the day. A series of presentations were delivered throughout the day on: - diabetes QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 8 - hand-washing and germ transmission - sexual health - healthy eating, nutrition, and reading food labels - public health strategy for Nunavu QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 9 This report was prepared by: Gwen Healey Executive Director, Qaujigiartiit/Arctic Health Research Network (Nunavut) Iqaluit, NU Ahrn.nunavut@gmail.com T: 867 975 5933 F: 867 975 5940 ARCTIC HEALTH RESEARCH NETWORK AHRN is a community driven, northern lead, health and wellness research network that facilitates the identification of health research priorities in the three Canadian territories. The goal of AHRN is to enable health research to be conducted locally, by northerners, and with communities in a supportive, safe, culturally�sensitive and ethical environment, as well as promote the inclusion of both traditional knowledge and western sciences in addressing health concerns, creating healthy environments, and improving the health of Nunavummiut. AHRN ensures best practices in health research through participation in health research activities, data management, dissemination of findings, training of health researchers, and knowledge translation to ensure transfer of findings to policy, practice and community programming. Representatives from Nunavut Tunngavik Inc., the Nunavut Research Institute, the Nunavut Association of Municipalities, and the Dept. of Health and Social Services, community members, and youth are currently involved in the initiative in Nunavut. www.arctichealth.ca QAUJIGIARTIIT/ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT Prepared by: Gwen Healey, M.Sc. ahrn.nunavut@gmail.com 10other
Impact of health care provider turnover on health outcomes: A scoping reviewMaria Cherba, Gwen Healey

Talks about healthcare provider turnover on health …

Englishᐃᓄᒃᑎᑐᑦother
Current Projects 2014Qaujigiartiit Health Research Centre

Overview of 2014 …

Englishᐃᓄᒃᑎᑐᑦᖃᐅᔨᒋᐊᖅᑏᑦ Qaujigiartiit Health Research Centre ᐃᖃᓗ ᐃᑦ, ᓄᓇᕗᑦ Iqaluit, Nunavut Vol. 3 Child and Youth Health and Wellness •Child and Youth Mental Health and Wellness Intervention, Research and Community Advocacy Project (Nunavut-wide) (photovoice research, youth wellness and empowerment program, Inunnguiniq Parenting Program, health services and front-line workers) •Nutaqqavut Health Information System Sexual Health •Building a Northern-led research programme to explore HIV/AIDS and sexual health in NWT and Nunavut •Sexual Health and Relationships Among Nunavut Youth: Perspectives on knowledge and beliefs •Youth-led sexual health arts-based interventions: using drama and Inuit performance arts to share messages about sexuality Community Health •Evaluation of Young Hunters Support Program in Arviat Healthy Foods and Food Security •Exploring food security and access among users of food-sharing programs in Nunavut •Atii! Healthy Living Project: A youth-led school-based healthy living intervention for Nunavut children and families Circumpolar Health •CircumChange - exploring community perspectives on societal and environmental change •Mental Health and Suicide - Case studies of prevention programs in the Circumpolar countries •Exploring Circumpolar Health Systems Innovations, Architecture, and Pathways for Wellness Climate Change and Health •Identifying youth perspectives on climate change policy and identifying community health indicators of climate change impact Chronic Disease Prevention •Multi-sectoral approach to reducing chronic disease in Nunavut Current Projects 2014 titiqqaq@qhrc.ca www.qhrc.ca (T) 867-975-2476 PO Box 11372 987-B Qikiqtani Drive Iqaluit, NU X0A 0H0 ᖃᐅᔨᒋᐊᖅᑏᑦ Qaujigiartiit Health Research Centre 2012 Community-run Research Projects – We facilitate and support the development of community-driven health research projects throughout Nunavut. We are currently helping community members to explore youth wellness; mental health; sexual health; healthy eating; food security; climate change; healthy homes and hygiene; parenting; Inuit Qaujimajatuqangit and more through research. ᐱᓕᕆᐊᒃᓴᕆᔭᖓ ᖃᐅᔨᒋᐊᖅᑏᑦ ᐊᔪᓐᖏᑎᑦᑎᓗᑎᒃ ᖃᐅᔨᓴᕐᓂᕐᒥᒃ ᓄᓇᓕᓐᓂ, ᐅᑭᐅᖅᑕᖅᑐᒥᐅᑕᓄᑦ, ᐊᒻᒪᓗ ᓄᓇᓕᓐᓂᒃ ᐃᑲᔪᖅᑕᐅᑦᑎᐊᕐᓗᓂ, ᐊᑦᑕᓇᓐᖏᓪᓗᓂ, ᐃᓕᖅᑯᓯᕐᒥᒃ ᐃᓱᒪᒋᔭᖃᑦᑎᐊᕐᓗᓂ ᐊᒻᒪᓗ ᓈᒻᒪᑎᐊᖅᑐᒦᓪᓗᓂ, ᐊᒻᒪᓗᒃᑕᐅᖅ ᖃᐅᔨᔭᐅᕚᓪᓕᑎᓪᓗᒍ ᐃᓚᒋᔭᐅᓂᖓ ᑕᒪᒃᑮᒃ ᐱᖅᑯᓯᑐᖃᑦᑎᒍᑦ ᖃᐅᔨᒪᓂᕆᔭᐅᔪᑦ ᐊᒻᒪᓗ ᖃᓪᓗᓈᓄᑦ ᓇᓗᓇᖅᑐᓕᕆᓂᐅᔪᑦ ᑲᒪᒋᔭᖃᕐᓂᒃᑯᑦ ᐋᓐᓂᐊᖅᑐᓕᕆᓂᕐᒧᑦ ᐃᓱᒫᓘᑎᐅᔪᓂᒃ, ᖃᓄᐃᖏᑎᐊᖅᑐᒥᒃ ᐊᕙᑎᓕᐅᕐᓂᖅ, ᐊᒻᒪᓗ ᐋᖅᑭᐹᓪᓕᖅᑎᕆᓂᖅ ᑎᒥᒃᑯᑦ ᖃᓄᐃᖏᑎᐊᕐᓂᖏᑕ ᓄᓇᕗᑦᒥᐅᑦ. Ethics - Exploring Inuit and community perspectives on ethics; forming a Northern Health research ethics review board; developing a tool for community members to use when evaluating health research proposals; and teaching workshops and seminars about ethical conduct in research in Nunavut. Knowledge Sharing – we look at interesting and creative ways community members, researchers, and health care workers can share health information. Please visit our web site for more information. www.qhrc.ca Training – we deliver workshops on proposal writing; health research ethics; public health education; research methods; health promotion and other topics that community members identify. Qaujigiartiit health Research Centre (AHRN-NU) Who are we? The goal of Qaujigiartiit Health Research Centre is to enable health research to be conducted locally, by Nunvummiut, and with communities in a supportive, safe, culturally-sensitive and ethical environment, as well as promote the inclusion of both Inuit Qaujimajatuqangit and western sciences in addressing health concerns, creating healthy environments, and improving the health of Nunavummiut. What do we do? ᑭᒡᒐᖅᑐᐃᔩᑦ ᑐᓐᖓᕕᒃᑯᓐᓂᑦ, ᓄᓇᓄᑦᒥ ᓄᓇᓖᑦ ᑲᑐᔾᔨᖃᑎᒌᖏᑦ, ᓄᓇᕗᑦᒥ ᖃᐅᔨᓴᖅᑐᓕᕆᔨᒃᑯᑦ ᐊᒻᒪᓗ ᐱᓕᕆᕕᖓ ᐊᓐᓂᐊᖅᑐᓕᕆᔨᒃᑯᑦ ᐊᒻᒪᓗ ᐃᓄᓕᕆᔨᒃᑯᑦ, ᐃᓅᓱᒃᑐᓕᕆᔨᒃᑯᑦ ᐊᒻᒪᓗ ᓄᓇᓕᓐᓂ ᐃᓚᒋᔭᐅᔪᑦ ᒫᓐᓇᐅᔪᖅ ᑭᒡᒐᑐᖅᑕᐅᕗᑦ ᖃᐅᔨᒋᐊᖅᑏᑦ ᑲᑎᒪᔨᖏ Representatives from Nunavut Tunngavik Inc., a hamlet health committee, the Nunavut Research Institute and the Dept. of Health and Social Services, youth and community members are currently represented on the Qaujigiartiit Board of Directors. ᑐᓐᖓᕕᒋᔭᐅᔪᑦ - ᕿᒥᕐᕈᓂᖅ ᐋᓐᓂᐊᖅᑐᓕᕆᓂᕐᒧᑦ ᖃᐅᔨᓴᕐᓂᕐᒧᑦ ᑐᓐᖓᕕᒋᔭᐅᔪᓂᒃ ᑖᒃᑯᓇᓂ ᐱᖓᓱᓂ ᐊᕕᑦᑐᖅᓯᒪᔪᓂ, ᐱᓗᐊᖅᑐᒥᒃ, ᖃᐅᔨᓴᕐᓂᖅ ᑐᓐᖓᕕᒋᔭᐅᔪᓂᒃ ᐃᓄᒻᒥᑦ ᐊᒻᒪᓗ ᓄᓇᓖᑦ ᐃᓱᒪᒋᔭᖓᑎᒍᑦ; ᐊᒻᒪᓗ ᐱᕙᓪᓕᐊᑎᑦᑎᓂᖅ ᐱᓕᕆᔾᔪᑎᐅᔪᓐᓇᖅᑐᒥᒃ ᓄᓇᖃᑦᑎᐅᔪᓄᑦ ᐊᑐᖅᑕᐅᓗᓂ ᖃᐅᔨᓴᓕᕋᐃᑉᐸᑕ ᐋᓐᓂᐊᖅᑐᓕᕆᓂᕐᒧᑦ ᖃᐅᔨᓴᕐᓂᕐᒧᑦ ᑐᒃᓯᕋᐅᑎᓂᒃ ᓄᓇᓕᖏᓐᓄᑦ; ᐊᒻᒪᓗ ᐋᖅᑭᒃᑎᕆᓗᑎᒃ ᐅᑭᐅᖅᑕᖅᑐᒥ REB ᖃᐅᔨᒪᓂᕆᔭᐅᔪᓂᒃ ᑐᓴᐅᒪᑎᑦᑎᓂᖅ – ᖃᐅᔨᓴᖅᑐᒍᑦ ᐊᑐᖅᑕᐅᔪᓐᓇᖅᑐᓂᒃ ᓄᓇᓕᓐᓄᑦ ᑐᓴᐅᒪᑎᑦᑎᖃᑦᑕᕐᓂᖏᒍᑦ ᑎᑭᑉᐸᓪᓕᐊᔪᓂᒃ ᖃᐅᔨᓴᖅᑎᓂᒃ ᐊᒻᒪᓗ ᖃᓄᖅ ᖃᐅᔨᓴᖅᑏᑦ ᑐᓴᐅᒪᑎᑦᑎᑦᑎᐊᕈᓐᓇᕐᒪᖔᑕ ᑐᑭᓯᐅᒪᔾᔪᑎᒥᓂᒃ ᓄᓇᓕᓐᓂᒃ, ᐋᓐᓂᐊᖅᑐᓕᕆᔨᐅᔪᓂᒃ ᐊᒻᒪᓗ ᐊᑐᐊᒐᓐᓂᒃ- ᐊᒻᒪᓗ ᐃᓱᒪᓕᐅᖅᑎᐅᔪᓂᒃ ᑖᒃᑯᓇᓂ ᐱᖓᓱᓂ ᐊᕕᑦᑐᖅᓯᒪᔪᓂ. ᑲᑎᒪᓃᑦ/ᐃᓕᓐᓂᐊᕐᓃᑦ – ᐃᓕᓐᐊᓂᕐᑎᑦᑎᖃᑦᑕᖅᑐᒍᑦ ᑐᒃᓯᕋᐅᑎᓂᒃ ᑎᑎᕋᓐᓂᕐᒧᑦ; ᐋᓐᓂᐊᖅᑐᓕᕆᓂᕐᒥᒃ ᖃᐅᔨᓴᕐᓂᕐᒧᑦ ᑐᓐᖓᕕᒋᔭᐅᔪᓂᒃ; ᑭᒃᑯᑐᐃᓐᓇᐃᑦ ᐋᓐᓂᐊᖅᑐᓕᕆᓂᖏᓐᓄᑦ ᐃᓕᓐᓂᐊᕐᓂᕐᒥᒃ; ᖃᐅᔨᓴᕐᓂᕐᒧᑦ ᐊᑐᖅᑕᐅᓲᓂᒃ; ᐋᓐᓂᐊᖅᑐᓕᕆᓂᒥᒃ ᖃᐅᔨᕚᓪᓕᑎᑦᑎᓂᕐᒥᒃ ᐊᒻᒪᓗ ᐊᓯᖏᑦ ᓇᓗᓇᐃᖅᑕᐅᓯᒪᔪᑦ ᓄᓇᓕᓐᓄᑦ. ᓄᓇᓕᓐᓄᑦ ᐊᐅᓚᑕᐅᔪᑦ ᖃᐅᔨᓴᕐᓂᕐᒧᑦ ᐱᓕᕆᐊᒃᓴᐃᑦ – ᑲᔪᓯᑎᑦᑎᕙᑦᑐᒍᑦ ᐊᒻᒪᓗ ᐃᑲᔪᖅᑐᐃᓪᓗᑕ ᐱᕙᓪᓕᐊᓂᖓᓂᒃ ᓄᓇᓕᓐᓂ ᑲᒪᒋᔭᐅᔪᓂᒃ ᐋᓐᓂᐊᖅᑐᓕᕆᓂᕐᒧᑦ ᖃᐅᔨᓴᕐᓂᐅᔪᓂᒃ ᓄᓇᕗᓗᒃᑖᒥ. ᒫᓐᓇᐅᔪᖅ ᐃᑲᔪᕐᒥᔪᒍᑦ ᓄᓇᖃᑦᑎᐅᔪᓂᒃ ᕿᒥᕐᕈᓗᑎᒃ ᐃᓅᓱᒃᑐᐃᑦ ᐃᓱᒪᒃᑯᑦ ᖃᓄᐃᖏᑎᐊᕐᓂᖏᓐᓂᒃ; ᐃᒻᒥᓃᖅᑕᐃᓕᒪᑎᑦᑎᓂᕐᒥᒃ; ᓂᕆᑦᑎᐊᖃᑦᑕᓂᕐᒥᒃ; ᓂᖀᓂᒃ ᓴᐳᔾᔨᓯᒪᓂᕐᒧᑦ; ᓯᓚᐅᑉ ᐊᓯᔾᔨᐸᓪᓕᐊᓂᖓ; ᖃᓄᐃᖏᑎᐊᖅᑐᑦ ᐊᖏᕐᕋᕆᔭᐅᔪᑦ ᐊᒻᒪᓗ ᓴᓗᒪᑎᑦᑎᓂᖅ ᑎᒥᒥᒃ; ᕿᑐᓐᖏᐅᕐᓂᖅ; ᐃᓄᐃᑦ ᖃᐅᔨᒪᔭᑐᖃᖏᑦ ᐊᒻᒪᓗ ᐊᒥᓱᑦ ᓱᓕ ᖃᐅᔨᓴᕐᓂᒃᑯᑦ.other
Current Projects 2010Qaujigiartiit Health Research Centre

Overview of 2010 …

EnglishᐃᓄᒃᑎᑐᑦQAUJIGIARTIIT ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT 2007-08 FINAL REPORT PREPARED BY: Gwen K. Healey, M.Sc. Executive Director PO Bo x 11 3 7 2 • t e l eph o n e : 8 6 7 9 7 5 5 9 3 3 • a h r n . nun a vut @ g m a i l . c o m • w w w. a r c ti c h e a lt h . c a Table of Contents Introduction 1 Qaujigiartiit/Arctic Health Research Network - Nunavut 1 Funding 2 Board of Directors 2 Vision for 2007-08 2 Ethics 4 Basic principles in health research ethics 4 Goals of the AHRN Tri-territorial Ethics Project 5 Common Themes Across the Territories 6 Licensing 6 Principles of Respect 8 Meaningful Engagement 8 Appropriate research methods 10 Ownership, Control, Access and Possession (OCAP) of data 11 Sharing knowledge and communicating results 13 Forming a Tri-territorial Ethics Advisory Committee 13 Reviewing community, territorial and national guidelines and literature for ethical conduct of health research 13 Developing a health research ethics checklist for community proposal reviewers 14 Nunavut Ethics Workshop 15 Research, Respect and Building Capacity: Negotiating relationships and working together 16 Information about research processes 17 Recommendations for ethical review 17 CBPR Training 18 Documentation of Processes 18 Nature of Informed Consent 18 Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 i Community Consultation 18 Research Agreements 19 Knowledge Sharing 20 What is knowledge sharing? 20 Literature review 20 Methods 20 Findings 20 The Need for Clearer Terminology 21 The Importance of Frameworks 21 Knowledge Mapping as a Conceptual Model for Knowledge Sharing 21 Knowledge Sharing and Inuit Community Members 21 Knowledge Sharing and Decision-Makers 22 Knowledge Sharing and Clinicians 22 Knowledge Sharing and Researchers 22 Gaps in the Literature 22 Community visits and sharing knowledge within Qaujigiartiit 23 Community Visits 23 Knowledge Sharing in Qaujigiartiit/AHRN-NU 23 Presentations 23 Newsletter 24 Website – www.nunavut.arctichealth.ca 24 Teaching Resources 24 Community-driven Research Projects 25 The goals of community-driven research projects 25 Cambridge Bay youth exploring identity and suicide prevention through participatory video 25 Conclusion 26 Ethics 26 Knowledge Sharing 26 Next Year 26 References 27 Literature Consulted for this Report 29 Appendix A – AHRN Tri-territorial Ethics Advisory Committee 33 Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 ii Appendix B – Terms of Reference for AHRN Ethics Advisory Committee 34 Appendix C - Inuit and community perspectives on ethics in Nunavut 36 Appendix D – Community proposal reviewer checklist (Draft) 38 Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 iii Introduction Qaujigiartiit/Arctic Health Research Network - Nunavut The Arctic Health Research Network is the first Canadian tri-territorial health research network linking north�ern regions. The network includes health research centers based in the Yukon, Northwest Territories and Nunavut. To work towards its mandate to improve health outcomes through research, this network is and must be a community driven, northern lead, health and wellness research network that facilitates the identi- fication of health research priorities in the three territories. The vision for the network includes participation in health research that values both traditional knowledge and western sciences and to address health concerns, create healthy environments, and improve the health of persons in the three terri�tories. It ensures best practices in health research through participation in health research activities, sharing of findings, training of health researchers, and knowl�edge translation to ensure transfer of findings to policy, practice and community programming. The goal of Qaujigiartiit/AHRN-NU is to enable health research to be conducted locally, by northerners, and with communities in a supportive, safe, culturally-sensitive and ethical environment, as well as promote the inclusion of both traditional knowledge and western sciences in addressing health concerns, creating healthy environments, and improving the health of Nunavummiut. The Arctic Health Research Network in each territory works with communities to develop health research priorities to share with researchers coming North, as well as works with Northern training programs to facili�tate northerner participation in the development, design and delivery of health research projects that can be run in communities by community members. Representatives from Nunavut Tunngavik Inc., the Nunavut Association of Municipalities, the Nunavut Re�search Institute and the Dept. of Health and Social Services, youth and community members are currently involved in the initiative and are members of the Board of Directors. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 1 Funding For the initiatives described in this report, the Qaujigiartiit/Arctic Health Research Network received funding from • the Tri-Territorial Health Access Fund • the Canadian Institutes for Health Research Team Grant (University of Toronto) • the Isaksimagit Inuusirmi Katujjiqatigit Embrace Life Council We are grateful for the financial support contributed by these organizations, without which the Arctic Health Research Network would not be able to operate. Board of Directors The Qaujigiartiit/Arctic Health Research Network - Nunavut is guided by a board of directors comprised of the following 6 members: • Nunavut Association of Municipalities, represented by Lynda Gunn • Nunavut Tunngavik Incorporated, represented by Virginia Qulaut Lloyd and Laakuluk William�son • Nunavut Dept. of Heath and Social Services, represented by Andrew Tagak Sr. • Nunavut Research Institute, represented by Carrie Spavor and Jennifer Wilman • Sarah Jancke, Youth Representative • Jodi Durdle, Community Member Representative The board of directors met 3 times in 2007-08 in Iqaluit, including an AGM in June 2007. The board of di�rectors has been very involved in the work of Qaujigiartiit/AHRN-NU and it is a pleasure to work together on community health and health research initiatives. Vision for 2007-08 The vision for the Nunavut network site was to build our connections with community members; provide opportunities for training in health research-related fields; create an environment of open learning and shar�ing in terms of community health and research knowledge; conduct a review of community ethical guide�lines for health research and collect community input on health research ethics protocols; examine health information communication and knowledge synthesis and translation in the North; and support community�driven research projects. The activities we undertook in order to address may of these goals included: • Delivering workshops • health research ethics (Rankin Inlet, NU, November 2007) • Proposal writing (Cambridge Bay, NU, February 2008) • Holding a community consultation with participants from across Nunavut Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 2 • Rankin Inlet, NU (November 2007) • Giving presentations to partners and at conferences • Pauktuutit Inuit Women’s Association meeting: Sexual Health is Everyone’s Responsibility (Inuvik, NT) • Inuit Tapiriit Kanatami (Ottawa, ON) • National Inuit Committee on Health (Iqaluit, NU) • Ajunnginiq Centre of National Aboriginal Health Organization (Ottawa, ON) • Nunavut Association of Municipalities Annual General Meeting (Iqaluit, NU) • Department of Health and Social Services (Iqaluit, NU and Cambridge Bay, NU) • Arctic Health Research Network – NWT Board Retreat (Shingle Point, NT) • Arctic Health Research Network – Yukon Health Promotion and Planning School (White�horse, YK) • Developing a quarterly newsletter • Making improvements to our website • Conducting community visits • Cambridge Bay, NU (July, 2007 and February 2008) • Rankin Inlet, NU (July 2007 and November 2008) • Holding a Public Health Education Day • Rankin Inlet, NU (November 2008) This report outlines the achievements made in these areas during the past year at Qaujigiartiit/Arctic Health Research Network - Nunavut Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 3 Ethics There exists a need throughout the Yukon, Northwest Territories and Nunavut to increase capacity to address issues of health research ethics, and in each territory the needs are diverse. This desire to participate in health research underscores the need for community members to better under�stand and share their perspectives on health research ethics, and particularly CIHR’s guidelines for the ethi�cal conduct of health research in the North. It also highlights the need for the three territories to collaborate to address issues of capacity in ethical review of health research projects conducted in the North. This final report outlines the year 1 activities conducted as part of a 3-year tri-territorial grant from the Tri�Territorial Health Access Fund (THAF). It is our hope that the ideas discussed in this paper can be reviewed, discussed and individualized by com�munities, organizations and government so that we may work collaboratively to improve and support ethical review in the North. Basic principles in health research ethics The basic principles of ethical health research generally include autonomy, nonmaleficence, beneficence, and justice as touchstone principles for conducting ethical review of health research proposals (1). Respect for autonomy is based on one’s right to self-determination, which is generally implemented through ‘informed consent’. Participants are seen as free-thinking individuals who must be informed about the pur�pose of the research, the possible harms and benefits associated with participating, processes to protect con- fidentiality and privacy, how the data will be used, participant rights and responsibilities, and withdrawal procedures should participants ever wish to withdraw. Once potential participants fully understand the scope and purpose of the research, they are considered enabled to make an “informed” decision about whether to participate. Non maleficence (the principle of doing no harm) and beneficence (the obligation to do good) are opera�tionalized through processes of “minimizing harm” and “maximizing good” in research. Research proce�dures that knowingly harm individual participants are always unacceptable. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 4 Finally, the principle of justice means that all members of society should assume their fair share of both benefits and burdens of health research. It is unacceptable to coercively target vulnerable groups (e.g. chil�dren) or, without good reason, to ban a whole group (e.g. women) from studies that might benefit them. These principles maintain that morally acceptable ends and means should guide all research methodologies and processes. Ethical dilemmas are a continuing problem in health research. Particularly, a focus on “individual ethics” has left some communities vulnerable to risks, for example, research conducted to advance academic careers at the expense of communities; wasting resources by selecting community-inappropriate methodologies; com�munities feeling over-researched, coerced or misled; researchers stigmatizing communities by releasing sen�sitive data without prior consultation; and communities feeling further marginalized by research (1). Finally, a particularly damaging effect of traditional research is that researchers often do not give back to communi�ties. Most blatantly, findings are not shared with community members, and more commonly, researchers have done little to build capacity within communities. The Arctic Health Research Network is playing a larger role in building community capacity for meaningful engagement with researchers coming to northern communities in an effort to change the power imbalance inherent in northern health research of the past. In addition, as is described in the following section, AHRN can play a role in the development, application and promotion of ethical guidelines for best practices in northern health research. It is our hope that the work conducted for this paper will provide the foundation upon which we continue to build ethics capacity in the North. Goals of the AHRN Tri-territorial Ethics Project Arctic Health Research Network (AHRN) in each territory has a mandate to serve as a resource centre for health research activities and to seek opportunities for educational partnerships in health research with a focus on Inuit, First Nations and other northerners’ health issues. As an organization designed to assist in the creation of community driven, northern lead, health and well�ness research units, AHRN has a role to play in the development, application and promotion of ethical guidelines for best practices in northern health research. The AHRN in each Territory is managed by a Board that is independent from the Boards in the other 2 territo�ries, facilitating responsiveness to Territory-specific issues and priorities, including ethics. Communications are maintained between the three sites through regular communications between staff and an annual face to face meeting of Board Chairpersons and Executive Directors, contributing to the development of pan�Territorial outcomes such as this report. To address these mandates, literature reviews, community consultations and educational workshops are an imperative part of the process of gathering information on community needs and involving community members in issues of health research. The goals of this project were to (See Appendix A): Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 5 1. Develop a tri-territorial strategy for ethical review of health research involving Indigenous peo�ples • created a tri-territorial Advisory Committee to guide Arctic Health Research Network’s ethics-related projects 2. Conduct a survey of existing ethical guidelines and literature that are relevant to northern popu�lations. 3. Evaluate community capacity to provide input on ethical review of health research projects by • generating discussion among community members and organizations about health re�search ethics and how to work together to address our capacity needs • conducting consultations on health research ethics and Inuit/community perspectives on what it means to be ethical in research 4. To develop a draft of a Health Research Ethics Checklist for community proposal reviewers. 5. To consult communities about health research priorities in each region. Common Themes Across the Territories Licensing Yukon From a Yukon Territorial government perspective, licensing of scientific research in the Yukon is legislated through the Yukon Scientists and Explorers Act, and is administered through the Heritage Branch of the Terri�torial Government’s Department of Tourism and Culture (2). There is no specific reference to health research in this Act. The Act includes conditions applicable to all li�censes, requirements to comply with the license, handling of specimens, reference to regulations which may be developed, and the penalty for violating the provisions of the Act, which includes the possibility of a fine of $1000 or imprisonment of six months, or both fine and imprisonment. The application for this research license includes the following elements for the description of the project: • Title of project • Confirmation of consultation with Yukon First Nation(s) in whose traditional territory the re�search will be conducted. Include individual(s) contacted and date of contact. Attach any letters of approval or support to the application. • Location(s) of area(s) of study (include N.T.S. map references) • Schedule and dates of field work. • Purpose and objectives of research project • Proposed research plan and methodology • Significance of proposed project • Relation of project to previous work or other work in progress. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 6 • Expected completion date (i.e. date of final report) In all cases, applications to conduct research on specific traditional Yukon First Nation lands are reviewed and approved or not by the appropriate First Nation Government or Governments. In addition, the Whitehorse General Hospital (WGH) has an Ethics Committee for clinical research activities conducted at WGH. Their Vision is “To become the leader in healthcare ethics in the Yukon”, and their Mis�sion “recognizes and responds to issues which create ethical and moral dilemmas and promotes discussion of these through multi-disciplinary partnerships; and promotes an ethical work environment, which inte�grates ethical principles and values“ (3). The Terms of Reference, Principles, Values, and Research Protocol are available upon request. Northwest Territories and Nunavut The NWT and Nunavut share the same Scientists Act. The processes for licensing a research project are out�lined in the Scientists Act in Nunavut and the Northwest Territories. In addition, in the NWT there is a hospital-based ethics committee and a college-based ethics committee specifically for the nursing program. For licensing, researchers are required to fill out a license application and submit their proposal with a 1 page summary in the appropriate local language where they will be working to the territorial research insti�tute. The intent at this point is to afford local stakeholders and community and territorial representatives with an opportunity to review and evaluate the proposed research study. After a defined period of time, feedback is collected and sent to the researcher at which point they are asked to make suggested changes to their plans or are granted a license by the Science Advisor to cabinet (typically, the Executive Director of the local research institute). In all regions of the North, power relationships between Indigenous communities and scientists are played out in various contexts, from environmental management, to land claims, to health research. Gearhard & Shirley (2007) argue that the research licensing consultation process under the Scientists Act in Nunavut has emerged as an important forum for negotiating power relationships between communities, scientists, and regulatory agencies in Nunavut (4). However, the authors highlight, communities and researchers alike are often unclear about what it entails, and in particular, about the role community agencies play in the license application review and approval process. Local reviewer feedback helps to inform the Science Advisor about community concerns and potential risks/benefits of each proposed project, but the final decision to approve or reject a license application or set the terms and conditions included in the license ultimately rests with the Science Advisor alone. The Scientists Act suggests that research license applications may only be denied when the Science Advisor determines that the research will result in negative social or environmental impacts. The failure of a project to provide some desired socioeconomic benefits is not sufficient grounds for withholding a license, accord�ing to the current interpretation of the Act. Licenses may only be withheld when the Science Advisor decides there is documented, legally defensible evidence that the proposed project would have negative effects on the well-being of people or the environment. However, the Act does not make it clear how local concerns Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 7 are to be written/worded or proven in order to satisfy the Science Advisor that a license should not be issued. The Research Institutes makes every effort to facilitate communication between researchers and communities aimed at resolving disputes and reaching a mutually acceptable compromise over proposed research. Clarifying research policies is one step to improving relations between scientists and communities. In addi�tion, steps need to be taken at both policy and project levels to train researchers, educate funding programs, mobilize institutions, and empower communities, thereby strengthening the capacity of all stakeholders in northern research (4). Principles of Respect In terms of ethical health research in the North, it is important that it: • Be based on trust, traditional values, respect, honor, honesty, • Take a holistic approach to health, where the whole person is considered in the maintenance of wellness and treatment; • Be connected to the mental, physical, spiritual, emotional and social aspects of health and well being of individuals and communities; • Consider factors such as the impacts of housing, economy, education and culture, food insecu�rity; • Take a broader inter-relationship approach to treating a person or maintain health and of the whole family, community • Be respectful that Knowledge is historically passed down by generations through stories, songs and traditional practices. Meaningful Engagement From a Yukon First Nations’ perspective, ethics and meaningful engagement in activities related to their health and well-being are inherently linked to the settlement of specific land claims: Land Claims are commonly thought to have started in 1973 with the presentation of Together Today for Our Children Tomorrow to Prime Minister Pierre Trudeau in Ot�tawa by Elijah Smith and a delegation of the Yukon Chiefs. However, Yukon claims had been put forward as early as 1901 and 1902 when Chief Jim Boss of the present�day Ta'an Kwach'an and surrounding area, wrote letters to the Superintendent Gen�eral of Indian Affairs in Ottawa and to the Commissioner of the Yukon. Jim Boss clearly outlined the concerns being felt by many of his people in terms of the aliena�tion of lands and resources in their traditional areas and their need to have a say in Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 8 their own affairs and governance. So it is clear that prior to 1973 Yukon First Nations have had long outstanding claims dating back to the time when some of the early effects of the Klondike Gold Rush and development in the Yukon were first being experienced by Yukon First Nations people. - Council of Yukon First Nations (5) In recent years First Nations in Canada have been engaged in developing their own research protocols, in�cluding in the Yukon. The Yukon First Nations (YFN) Heritage Group has developed a backgrounder to help First Nations communities (both self governing and non-claim settled) develop their own unique traditional knowledge polices, particularly as they relate to traditional ecological knowledge. The major points of the traditional knowledge policy framework are to be a guiding tool to assist First Nations in developing their own policies. For this reason, traditional knowledge and intellectual property rights in relation to research in the Yukon are controlled by each First Nation Government, in their development and implementation of pro�tocols. In Nunavut, participants in community consultations held over the years have indicated very strongly that Nunavut communities continue to be ‘researched’ without appropriate consultation. They also indicated that it is in the researchers’ best interests to consult, as they will obtain more complete and accurate pictures of the phenomenon being studied. In terms of how consultation plays a role in ethics, (6) propose that there are ethical goals in mind when a community is consulted: • Enhanced Protection (of the community): Consultation may be a particularly effective way for investigators to work with community members to identify individuals or subgroups with par�ticular needs or vulnerabilities that individuals outside the community may not recognize. • Enhanced Benefits (for both): Communities should be involved in identifying research questions and planning studies in order to conduct studies that benefit the particular communities in�volved. Enhancing the benefits to ensure that research is mutually beneficial, for example – the community can advocate for additional services or training as part of engaging with the re�searchers. • Legitimacy (of the research): By working in partnership, a forum will emerge in which commu�nity advisory members may discuss their views and concerns openly with researchers. • Shared responsibility (community-researcher): Community advisory committees can be in�volved in recruitment, endorsement, dissemination and raising awareness. Sharing of responsi�bility does not constitute the shifting of blame or removal of responsibility from investigators, sponsors or institutional review boards. The degree to which responsibility can be shared is lim�ited by the degree to which investigators and sponsors are sensitive to and accommodate those concerns. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 9 Appropriate research methods Health research methods are many and varied. Epidemiological methods, statistical research, qualitative and quantitative methods, and community-based participatory research. Each methodology helps answer specific questions. Participatory Action Research (PAR) and Community-based Participatory Research (CBPR) are two research paradigms that have come about as a way to address the ethical concerns of communities that have experienced “helicopter” research in the past. In the past, researchers frequently had exclusive control of the research process and use of the results. Participatory research attempts to break down the distinction be�tween researcher and subjects and to build collaboration between the parties (7). Participatory research usu�ally defines a research inquiry which involves: 1) some form of collaboration between the researchers and the researched; 2) a reciprocal process in which both parties educate one another; and 3) a focus on the production of local knowledge to improve interventions or professional practices. Community-based participatory research is a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities (Kellogg Foundation Community Health Scholars Program, 1). The process of community-based identification of issues of impor�tance for research can be time consuming and labor intensive. In the North, the distances between commu�nities and the many pressing issues facing communities pose challenges to this essential first step of CBPR. Although sensitivity to vulnerable participants is integral in CBPR, a different set of ethical issues may emerge that require consideration (Flicker), such as: • Community conflict: It is often difficult to find appropriate “community representatives” who will advocate on behalf of general community concerns. Sometimes it may be important to ob�tain consent at a community level from respected or elected leaders. This may cause conflict when community leaders and members disagree on the importance of a research issue. • Compensation: Given the time and effort expended by community members on CBPR teams, there may be an ethical imperative to ensure that adequate compensation exists for all team members. Unfortunately, little or no incentives are provided to either the individual respondent or community representatives (e.g. the host organization or health centre) to acknowledge the time contributed to a project. This further disempowers individuals and communities by sug�gesting their time, energy, and resources may be of little worth, and they should participate simply because they have been invited. • Sensitive Information: Ethical issues may arise in regards to releasing or disseminating sensitive or unflattering data. Academic partners may feel the need to publish and stay true to the “ob�jective” nature of the data. Community members may fear that unflattering data may stigmatize their communities. Consequently, they may request that researchers consider the potential re�percussions to the community if the data are released prematurely or in an insensitive manner. These issues can potentially be addressed through a community research agreement, as discussed in Section 5 of this report. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 10 While community-based research methods are promoted for research where the community is involved, re�search ethics boards do not take into consideration important aspects of this methodology when assessing proposed projects. In a review of forms and guidelines from American and Canadian research ethics boards at institutions with a public health program, Flicker, et al., (2007) found that a great proportion of the guide�lines did not include evaluation of important components of a community-based participatory research pro�ject. For example, none (n = 30) queried community involvement in defining the research problem, asked about hiring practices, or examined what community capacity building opportunities there might be throughout the research process. Only one institution asked how unflattering data might be handled, but this had more to do with adverse events in medical research than the potentially stigmatizing results of socio�behavioural research. Only 5 institutions asked about plans for disseminating the results, and of those, none asked about procedures for terminating a study or vetoing publication based on community concerns. This is very important consideration for community-based research in the territories, as the licensing process in each territory is completely dependent upon ethical review conducted at the researcher’s academic institu�tion. Finally, while community-based research methods have emerged as an important way to address ethical concerns of communities, they are not always an appropriate method. Other research methods are equally important when they are addressing community-led research questions or when communities are provided with an option to proceed with a community-based research approach or not, as articulated in the CIHR Guidelines (9). Ownership, Control, Access and Possession (OCAP) of data The principles of OCAP (Ownership, Control, Access and Possession) are important to the ethical conduct of research involving northerners and northern Indigenous peoples. These principles have been advanced through the Assembly of First Nations (8), the National Aboriginal Health Organization and others. The OCAP principles were adopted by the Council of Yukon First Nations Chiefs Leadership resolution (LDR Resolution NO782./06) passed in October 2006 which stated the following: Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 11 Andrew Qappik, Uqqurmiut Centre Panniqtuuq, Nunavut Weaving, Uqqurmiut Centre Panniqtuuq, Nunavut Andrew Qappik, Uqqurmiut Centre Panniqtuuq, Nunavut • OCAP protects communities from researchers coming in and leaving with data without sharing the information; • OCAP protects the First Nations from conclusions that are reached without consideration on all the context or input from First Nations; • OCAP enables First Nations partners and experts; • In the past, researchers have treated First Nations as only a source of data; • Research has been damaging in the past in instances where genetic material was used, sensitive information was published and confidential cultural information was shared inappropriately; • OCAP will enhance Yukon First Nations control and capacity and lead to more useful and reli�able information that will benefit Yukon First Nation communities, enable more informed deci�sions and create better results; • OCAP also enhances self-determination. It is within the context of these principles that ethical research protocols have already been developed by some First Nations governments in Yukon, and that will guide the development and implementation of these agreements now and in the future. Additionally, these protocols can include requirements for additional information and conditions. The re�searchers must: • Address issues that are common to all Indigenous peoples such as ownership, consent, control, access and protection of information and samples • Outline how the project will directly benefit the community • Have a detailed communications strategy • Identify what infrastructure will be required • Identify who will own the data and where it will be stored • Identify if there will there be capacity building/training involved • Identify if there will be economic benefits for the community • Identify if there will there be samples of species taken, what will be done with them • Follow Traditional Knowledge protocols for Indigenous peoples • Include a list of partners and agencies involved • Identify what the final product will be, and that it will be in a format useful to the community • Includes knowledge of the people in the Traditional Territory/region/land area in a respected way. Many of these conditions can be outlined in a community-researcher research agreement. For a community�based participatory research project in Kahnawahke, Macaulay, A.C., et al, (7) developed a 7-page ‘code of ethics’ document, or research agreement, that included a policy statement; principles of participatory re�search; the different between community-based and academic researchers; the obligations of researchers and the community; data ownership; the process of incorporating new investigators; and the procedure for joint dissemination of results including dissension if necessary. Inevitably, the nature of relationships and questions of ownership are complex factors that must be negotiated in each setting as need arises. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 12 Sharing knowledge and communicating results Results should be returned to the community in a format that is useful and understandable, such as through community radio, through community presentations, posters and informative pamphlets if appropriate, hold�ing open forums and presentations in the community and/or visiting and speaking in schools, etc. Sometimes researchers have published without consulting the community, resulting in negative conse�quences from publications where communities had no opportunity to correct misinformation or to challenge interpretations. Macaulay, et al. (7), included a statement in their community-researcher code of ethics that read: “No partner can veto a communication. In the case of disagreement, the partner who disagrees must be invited to communicate their own interpretation of the data as an addition to the main communication, be it oral or written. All partners agree to withhold information if the alternative interpretation cannot be added and distrib�uted at the same time, providing the disagreeing partners do not unduly delay the distribution process.“ Macaulay A., et al, (7) This type of agreement may be a way forward in dealing with such issues and encouraging the sharing of information, provided all parties agree to it. Forming a Tri-territorial Ethics Advisory Committee The projects outlined in this report were guided by a tri-territorial advisory committee that was formed by the Arctic Health Research Network. The Committee has 8 representatives: 2 from each territory and 2 national representatives who have worked in the field of health research ethics in Canada’s North. The committee discussed issues related to • health research ethics review in the North; • community-research agreements; • were invited to review the health research ethics checklist for community proposal reviewers; • shared literature, perspectives, experiences and expertise pertinent to health research ethics review in the North This committee met primarily by teleconference and email, with plans for a face-to-face meeting for the fol�lowing fiscal year. A list of the members of this committee and the Terms of Reference are provided in Appendix A and B. Reviewing community, territorial and national guidelines and literature for ethical conduct of health research Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 13 A number of guidelines, articles, and reports were gathered from communities, territorial and national or�ganizations and other sources to assess what resources are available for communities. A list of the literature consulted for this report is listed with the reference section of this document. Developing a health research ethics checklist for community proposal re�viewers The development of this tool was undertaken at the request of several community-based health research eth�ics proposal reviewers in Nunavut. The checklist is meant to be a guide in assisting community proposal re�viewers to assess the ethical content of any health research project that is proposed to take place in their community. The checklist includes important questions about: • community consultation and engagement in the research project • assessing risks and benefits to the community/individual • community research agreements • sharing knowledge gained (dissemination) at the end of the project • research methods • confidentiality • conflicts of interest • advertisements and recruitment • participant withdrawal • financial or other compensation • consent forms • scientific review • other comments The checklist can also be helpful to those engaging in research review at the territorial level. The checklist has been reviewed by stakeholders in Nunavut; the AHRN Ethics Advisory Committee; the Inuit Health Re�search and Planning Winter Institute students (CIET Canada); and others. A draft of this checklist is provided in Appendix D. Reviewing community-researcher research agreements in the territories It has become a common practice for researchers to engage a community in a research project through a community-researcher research agreement. These contracts outline the responsibilities of the community member(s) involved and the researcher for the duration of the study period. They are signed by both a com�munity member and by the researcher. A template for a research agreement is available as an appendix in the CIHR Guidelines for the Conduct of Research with Aboriginal Peoples (9), developed by the Centre for Inuit Health and the Environment (CINE) at McGill University. Some communities have developed their own agreements/contracts for researchers, or researchers have developed innovative ‘codes of ethics’ in partnership with a community (7). Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 14 This topic is discussed further, below, in the section titled “Exploring Regional Capacity in the NWT”, how�ever, it requires further exploration across the territories to investigate such issues as local power dynamics; who speaks for the community when negotiating such agreements; how research agreements can be devel�oped; and others. Gathering Inuit and community perspectives on ethics As described in an earlier section, the licensing process in Nunavut is the singular process or reviewing and providing feedback on health research projects, unless the researcher conducts consultations with the com�munity in advance. The license is reviewed by Nunavut Tunngavik Inc., the Research Committee of the Dept. of Health and Social Services, the municipal council of the community involved, and other stakeholders as the topic requires. One of the concerns related to this process is that very often community members or the local municipal council either do not have adequate resources to evaluate the license or the time to do so given other obligations. In addition, due to the high turnover of staff in Nunavut, there are not always enough human resources at the various government and territorial organizations to ensure timely and thor�ough review of licensing applications. Nunavut Ethics Workshop Before the release of the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples (9), the document underwent widespread consultation across Canada. Agencies in every Canadian province and territory were consulted about the document – except for Nunavut. In order to engage in a dialogue on ethi�cal health research practices on more even footing, it was imperative that community members be invited to have their say on ethical conduct of health research in Nunavut. Evaluating capacity in Nunavut begins with discussions on what it means to be ethical from an Inuit and community perspective. For this reason, Qaujigiartiit/AHRN-Nunavut has conducted two consultations on health research ethics: 1) in Iqaluit, NU in 2006 on the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples and 2) in Rankin Inlet, NU in 2007 to continue the dialogue on Inuit and community perspectives on health research ethics (14-16). Information from this meeting in provided in Appendix C. The perspectives shared at these meetings primarily related to community values and respecting their role in ethics evaluation. Participants felt that it was unethical for researchers to not make efforts to build trusting relationships with community members and/or to reduce the power differential between researchers and community members through training, dialogue and other means. Participants at our workshop highlighted several important themes in community-based research they felt were not only methodological considerations that they would like to see enhanced, but ethical considera�tions from the perspective of the community: • Respect for the community • Trust and building relationships • Use of appropriate research methods • Equality, equity and power • Ownership of data (including samples) Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 15 • Sharing of knowledge gained from research • Information about research processes These feelings underscore a comment made by Martha Flaherty (past President, Pauktuutit Inuit Women’s Association) at a workshop in Inuvik in 1995 held to bring researchers, organizations and community repre�sentatives together to discuss issues of health research ethics: “Real participatory research must include Inuit control over the identification of ar�eas and issues where research is needed and the design and delivery of the method�ology. Inuit would participate in the collection and analysis of data and have equal control over the dissemination of the information and research findings. In my view, anything less is not participatory and it is unfair to call it such.” - Martha Flaherty, 1995 (10) During discussions, ‘Inuit ethics’ were discussed by our participants and it is important to note that partici�pants requested more dialogue with elders in future discussions about ethics in Nunavut, which Qaujigiartiit/ AHRN-NU will make every effort to support. Research, Respect and Building Capacity: Negotiating relationships and working together Participants in the Nunavut workshops highlighted the importance of respect and partnership between re�searchers and communities in northern research. They felt that spending time to develop relationships re�lieves stress for both researchers and community and creates a pleasant environment in which to work. Participants made suggestions they felt would help facilitate a participatory process: • consulting community members, especially elders, in addition to community leaders • researching a topic of importance to the community • including community members in the conduct of the research by hiring local knowledge hold�ers or training local research assistants • providing local training opportunities when appropriate They also highlighted that communities need to be more aware of their rights to make requests of researchers and negotiate the terms of the research being conducted in their community. Participants noted that by work�ing in partnership, researchers and community members can get to know each other, share worldviews and exchange knowledge in a meaningful and respectful way. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 16 Improving participatory relationships has also been discussed quite extensively in the literature (1-7, 9-13)). Kaufert et al, (10) describe discussions at a meeting in Inuvik in 1995 where the members of the research community and members of the Canadian Indigenous community met to discuss health research ethics and communities. At this meeting, all parties agreed to focus on the importance of developing a more participa�tory process and that both sides would work together to: • define research problems and obtain funding • train and involve community members in data collection • ensure the participation of community members and organizations in the analysis and interpre�tation of research findings • develop joint control over the dissemination of results Since that time, some progress has been made, particularly with the publication of the CIHR Guidelines for the Conduct of Health Research With Aboriginal Peoples (9), which are quickly becoming the gold standard guiding document. In addition, the Nunavut Research Institute and Inuit Tapiriit Kanatami have recently re�vised and published a document entitled Negotiating Research Relationships with Inuit Communities: A Guide for Researchers (17). This progress is exciting and encouraging, and we hope to foster its continuation. Information about research processes Participants in the Nunavut workshops indicated that community members need more information about the research process in Nunavut, including how projects are licensed; who in the communities and territory are consulted during the development of the research project and during licensing; and how to increase com�munity involvement in the research process from start to finish. In order to continue to build capacity for ethical review in Nunavut, communities need to be well informed of their rights, their opportunities to have input on projects proposed to take place in their communities, and key ethical considerations for the conduct of research in their communities. While there has been some dis�cussion within AHRN’s consultations of the development of a northern-based ethical review board, it has become clear that while there is tremendous ability to provide ethical review, there is a dearth of capacity (in the form of community health committees, staff and staff time, small populations, previous engagement with research projects) to support such a board from Nunavut at this time. It is hoped, however, that this will improve over time with increased opportunities to build northern capacity for ethical review, including those provided by Qaujigiartiit/Arctic Health Research Network - Nunavut. Recommendations for ethical review The responsibility for ethical review in health research is usually assigned to university-based human sub�jects committees. As noted earlier, this is particularly the case in the North, as an ethical review is not con�ducted in any of the three territories – the licensing process, described earlier, is completely dependent upon university-based ethical review boards. The university-based committees usually do not have first-hand knowledge of local conditions, local needs or priorities, which can reduce the effectiveness of their review in a northern context. It has been noted in the literature (1,10) that central scientific and ethical review proc�esses have limited capacity to assess potential local relevance of the research product. It has been proposed Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 17 that the central criteria for assessing the distribution of risks and benefits should be “whose interest does the research serve” (10. A concern in relation to reliance on non-northern-based ethical review committees (REBs) was their lack of local knowledge base, which limited their capacity to judge whether the process used to obtain community consent and participation was meaningful in local terms (10). Given the information gathered from the literature, and experiences gathered from consultations within the Arctic Health Research Network in the 3 territories, recommendations for the content of ethical review in�clude: • Community-based Participatory Research Training • Documentation of Processes • Nature of Informed Consent • Community Consultation • Research Agreements There is currently no ethical review process based in the three territories, therefore these recommendations are for institutions involved in ethical review of research in the North, and to be considered when a research ethics review board is developed in the North. CBPR Training Research Ethics Boards engaged in reviewing Community-based Participatory Research (CBPR), and other community-based research proposals, should be provided with basic training in the principles of CBPR (1). Documentation of Processes Research Ethics Boards should require CBPR projects to document the process by which key decisions re�garding research design were made and how communities most affected were consulted (1). Nature of Informed Consent Research Ethics Boards should consider the nature of the community involved in the research project and whether the method of consent (language, written vs. oral, etc.) is appropriate. It has been suggested that if participants are to have access to full information, then all objectives and options, including non�participation, “had to be presented in an accessible format; including oral presentation in community fo�rums, videotapes and documentation printed in Aboriginal languages” (10). The requirements for valid con�sent agreements usually include: (a) demonstration of subject competence; (b) communication of full infor�mation on risks and benefits; (c) assurance that the subject comprehended the information; (d) guarantees that the individual is able to act independently (Freeman, 1994, cited in Flicker, 2007). Consent agreements may need to use alternative media formats including video clips, community meetings, and community ra�dio. Community Consultation Research Ethics Boards should consider the amount of time that has been spent consulting with the commu�nity, and if the partnerships formed are meaningful, i.e. described in detail in the context of the community and its leadership. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 18 Research Agreements Research Ethics Boards should mandate that CBPR projects seeking ethical review provide signed terms of reference, memoranda of understanding, and/or community research agreements. These should clearly out�line the goals of the project, principles of partnership with the community, decision-making processes, roles and responsibilities of partners, and guidelines for how partnership will handle and disseminate data. (1) Finally, Ruttan’s statement (2004) articulates the findings of the Arctic Health Research Network in that: An ethic based in mutual respect, reciprocal collaborative exchange, and an aware�ness of the personal, political and cultural consequences, particularly in light of past relationships, should guide our actions. - Ruttan, 2004 (11) The discussion of community ethics and ethical review will be on-going and continue within the work of the Arctic Health Research Network. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 19 Knowledge Sharing What is knowledge sharing? Commonly, the concept of knowledge translation has been developed to refer to the creation and implemen�tation of a strategy to translate health research results into applicable findings for those requiring the informa�tion. It has evolved conceptually as a means for bridging the “know-do” gap. In the context of Qaujigiartiit/AHRN-NU and the work that is conducted by this organization, Knowledge Sharing is defined as the synthesis, translation and communication of health knowledge between vari�ous knowledge holders, such as policy-and decision-makers; researchers; com�munity members; and health care providers. Knowledge is dynamic and does not flow in a line from top to bottom, but fluidly between people and groups. Literature review Methods This literature review includes: • A review of academic literature. The search was conducted by Janice Linton at the Health Sci�ences Library at the University of Manitoba. The initial scan of literature was conducted by Gwen Healey (Exec. Dir. Of Qaujigiartiit) and relevant articles were then requested and shipped to Nunavut for review by Mandie BzDell (Research Assistant at Qaujigiartiit). • A review of grey literature (reports, conference proceedings, etc.) found on Google and on Goo�gle Scholar. • Findings were read and summarized and are shared in this report. Findings Throughout the review, a number of findings relevant to knowledge sharing in Nunavut were highlighted and are presented below. These topics include: • The need for clearer terminology • The importance of frameworks • Knowledge mapping as a conceptual framework fro knowledge sharing • Knowledge sharing and Inuit community members • Knowledge sharing and policy- and decision-makers • Knowledge sharing and health care providers Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 20 • Knowledge sharing and researchers These topics are further elaborated below in bullet-point form. A more in-depth presentation of these find�ings is available in our final report. The Need for Clearer Terminology • Synonyms for knowledge translation include knowledge translation, knowledge utilization, knowledge exchange, research transfer, research utilization • It is important to have clear terms in order to evaluate effectiveness of knowledge translation The Importance of Frameworks • There is no primary knowledge translation theory – there are several different theories. • One unified theory is required in the knowledge translation field in order to develop testable and probably useful interventions. • Logan & Graham’s Ottawa Model of Research Use – was the most favoured in the literature. • All frameworks emphasize involvement of all stakeholders, and multi-directional flow of informa�tion. Knowledge Mapping as a Conceptual Model for Knowledge Sharing Knowledge mapping: • Makes tacit and explicit knowledge concrete. • May increase involvement of key stakeholders. • Can assist in clarifying the flow of information. • Can be used with all types of knowledge translation. Knowledge Sharing and Inuit Community Members • When conducting health research: • Community members involvement from deciding the research design to disseminating results is essential. • Community members have right to own research and negotiate community needs with re�searcher(s). • Community members may choose to establish an independent advisory and ethical review committee . • In the context of health programming & services, the following Inuit-specific topics were dis�cussed in the literature: • Face to face interactions are important for Inuit. • Storytelling is an integral part of Inuit health information dissemination • Elders are the preferred first line for health information in a number of communities and con�texts. • Inuit see themselves as belonging to the larger Inuit community, irregardless of geography. • There is a shortage of interpreters who can translate health information. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 21 Knowledge Sharing and Decision-Makers • For decision-makers to apply research into daily decisions requires: • A clear presentation of the evidence-based message. • A credible source of research. • Electronic, fast, staged access to information delivery of research message. • Ongoing training for decision-makers on how to use research evidence in daily work is required for effective evidence-based decision-making. • Information about evaluation of knowledge sharing activities is discussed in the literature. Knowledge Sharing and Clinicians • There exists too much research for clinicians to apply in practice. • Knowledge translation is an important tool to close the gap between health evidence and clinical practice. • Most effective strategies at getting clinicians to incorporate health research into practice are ac�tive, multiple, and based on accurate assessment of clinician needs. Knowledge Sharing and Researchers • When conducting research with community members in Inuit Regions: • Follow guidelines offered by CIHR “CIHR Guidelines for Health Research Involving Aborigi�nal Peoples” and by ITK & NRI “Negotiating Research Relationships with Inuit Communities: A Guide for Researchers” • Understand local processes of knowledge creation, dissemination, and utilization. • Use of community-based participatory research to make work responsive to the concerns of communities members. • Build research capacity within the community. • Use of an evaluator to do a variety of process evaluation through research process. • When conducting research with decision-makers • Understand that knowledge translation must be interactive • Identify and understand the barriers for lack of use of research for decision-makers • Use interactive, non-passive forms of knowledge translation • When conducting research with clinicians, it is helpful to consider: • It takes time to build trusting relationships and networks between researchers clinicians • The need to respect for clinicians priorities and interests • Recognition of clinicians’ knowledge and expertise • The need for multi-directional information exchange and an ongoing forum for sharing in�cluding developing a shared language, culture, and conceptual base • The quality of in-person contact is important Gaps in the Literature Several gaps were identified during the literature review, such as: Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 22 • The need for truly community-driven research • The need for evaluation of knowledge translation activities • More information on the use of social network technology and its influence on knowledge shar�ing • In the literature different users groups of health information are described, however, there is no information on the different literacy levels that are examined in these contexts, if any. Community visits and sharing knowledge within Qaujigiartiit Community Visits For the Knowledge Sharing project, community visits were conducted in Rankin Inlet, NU and Cambridge Bay, NU. During these community visits, knowledge sharing was discussed and presentations and workshops were made to various stakeholder groups. A workshop on proposal-writing was delivered to community members in Cambridge Bay, NU as a part of the discussions on knowledge sharing. This was done at the request of community members, and we were happy to be able to meet their needs. A community visit to discuss sharing health information in Cambridge Bay also resulted in the development of a proposal for a community-driven health research project that was initiated and is being conducted by the local youth committee to explore issues of identity and suicide prevention for youth in the community. In Rankin Inlet, a Public Health Education Day was held and a number of community members attended to learn more about community health and receive a flu shot. At this event, community members spoke openly to the attendees about the need for help addressing the issue of nutrition and food security in, not only this community, but across Nunavut. They highlighted that the extremely high cost of market foods was one of the primary influences of poor nutrition in the community. Knowledge Sharing in Qaujigiartiit/AHRN-NU Presentations In the interests of sharing knowledge and improving communication between various agencies working in the North, presentations about Qaujigiartiit/AHRN-NU and the work being conducted by the organization were delivered to: Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 23 • Pauktuutit Inuit Women’s Association meeting: Sexual Health is Everyone’s Responsibility (Inuvik, NT) • Inuit Tapiriit Kanatami (Ottawa, ON) • National Inuit Committee on Health (Iqaluit, NU) • Ajunnginiq Centre of National Aboriginal Health Organization (Ottawa, ON) • Nunavut Association of Municipalities Annual General Meeting (Iqaluit, NU) • Department of Health and Social Services (Iqaluit, NU and Cambridge Bay, NU) • Arctic Health Research Network – NWT Board Retreat (Shingle Point, NT) • Arctic Health Research Network – Yukon Health Promotion and Planning School (Whitehorse, YK) Newsletter In the last year, Qaujigiartiit/AHRN-NU began publishing a quarterly e-newsletter in English and Inuktitut to help facilitate the sharing of knowledge about Qaujigiartiit activities with community members and partners. Print copies are provided at conferences, community meetings and consultations. Website – www.nunavut.arctichealth.ca In consultations with both community and national partners, it becme apparent that several stakeholder groups were consulting the AHRN web site for information. In an effort to improve the sharing of informa�tion, Qaujigiartiit has undertaken revisions to the Arctic Health Research Network web site to facilitate the sharing of documents, community priorities for health research, information about scholarships and other important health news. Teaching Resources In addition, resources from Qaujigiartiit/AHRN-NU community consultations and projects were provided to educators, such as the CIET Inuit Winter Institute in Health Research Planning (Ottawa, ON February 2008) and other researchers who conduct work in Nunavut. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 24 !"#$%&'( (ARCTIC HEALTH RESEARCH NETWORK) kNK5 December 2007, Volume 1, Issue 3 kNo7usb5 scsyc6g5 wo6fyE/s5txExo8i4 mo5bs?5gi4 x7ml cspn3i3u4 vq6Oi3u ZW7u, wcl8i x7ml vq6Oi3u. Wzhi4 s9li4 vtmic6t9lQ5 scsycMs6ymJ5 wo6fyE/s/Exo8i4 mo5bs?5gi4 x7ml kNosJ5 bs5gE/q8i4 ck6 grc3m/ 6t5tMs6g5 gryQxDti4 x7ml scsycc5b6gt5 other
ARCTIC HEALTH RESEARCH NETWORK – NUNAVUTGwen Healey

This speak of a need throughout the Yukon, Northwest Territories and Nunavut to increase capacity to address issues of health research ethics, and in each territory the needs are …

EnglishᐃᓄᒃᑎᑐᑦQAUJIGIARTIIT ARCTIC HEALTH RESEARCH NETWORK - NUNAVUT 2007-08 FINAL REPORT PREPARED BY: Gwen K. Healey, M.Sc. Executive Director PO Bo x 11 3 7 2 • t e l eph o n e : 8 6 7 9 7 5 5 9 3 3 • a h r n . nun a vut @ g m a i l . c o m • w w w. a r c ti c h e a lt h . c a Table of Contents Introduction 1 Qaujigiartiit/Arctic Health Research Network - Nunavut 1 Funding 2 Board of Directors 2 Vision for 2007-08 2 Ethics 4 Basic principles in health research ethics 4 Goals of the AHRN Tri-territorial Ethics Project 5 Common Themes Across the Territories 6 Licensing 6 Principles of Respect 8 Meaningful Engagement 8 Appropriate research methods 10 Ownership, Control, Access and Possession (OCAP) of data 11 Sharing knowledge and communicating results 13 Forming a Tri-territorial Ethics Advisory Committee 13 Reviewing community, territorial and national guidelines and literature for ethical conduct of health research 13 Developing a health research ethics checklist for community proposal reviewers 14 Nunavut Ethics Workshop 15 Research, Respect and Building Capacity: Negotiating relationships and working together 16 Information about research processes 17 Recommendations for ethical review 17 CBPR Training 18 Documentation of Processes 18 Nature of Informed Consent 18 Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 i Community Consultation 18 Research Agreements 19 Knowledge Sharing 20 What is knowledge sharing? 20 Literature review 20 Methods 20 Findings 20 The Need for Clearer Terminology 21 The Importance of Frameworks 21 Knowledge Mapping as a Conceptual Model for Knowledge Sharing 21 Knowledge Sharing and Inuit Community Members 21 Knowledge Sharing and Decision-Makers 22 Knowledge Sharing and Clinicians 22 Knowledge Sharing and Researchers 22 Gaps in the Literature 22 Community visits and sharing knowledge within Qaujigiartiit 23 Community Visits 23 Knowledge Sharing in Qaujigiartiit/AHRN-NU 23 Presentations 23 Newsletter 24 Website – www.nunavut.arctichealth.ca 24 Teaching Resources 24 Community-driven Research Projects 25 The goals of community-driven research projects 25 Cambridge Bay youth exploring identity and suicide prevention through participatory video 25 Conclusion 26 Ethics 26 Knowledge Sharing 26 Next Year 26 References 27 Literature Consulted for this Report 29 Appendix A – AHRN Tri-territorial Ethics Advisory Committee 33 Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 ii Appendix B – Terms of Reference for AHRN Ethics Advisory Committee 34 Appendix C - Inuit and community perspectives on ethics in Nunavut 36 Appendix D – Community proposal reviewer checklist (Draft) 38 Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 iii Introduction Qaujigiartiit/Arctic Health Research Network - Nunavut The Arctic Health Research Network is the first Canadian tri-territorial health research network linking north�ern regions. The network includes health research centers based in the Yukon, Northwest Territories and Nunavut. To work towards its mandate to improve health outcomes through research, this network is and must be a community driven, northern lead, health and wellness research network that facilitates the identi- fication of health research priorities in the three territories. The vision for the network includes participation in health research that values both traditional knowledge and western sciences and to address health concerns, create healthy environments, and improve the health of persons in the three terri�tories. It ensures best practices in health research through participation in health research activities, sharing of findings, training of health researchers, and knowl�edge translation to ensure transfer of findings to policy, practice and community programming. The goal of Qaujigiartiit/AHRN-NU is to enable health research to be conducted locally, by northerners, and with communities in a supportive, safe, culturally-sensitive and ethical environment, as well as promote the inclusion of both traditional knowledge and western sciences in addressing health concerns, creating healthy environments, and improving the health of Nunavummiut. The Arctic Health Research Network in each territory works with communities to develop health research priorities to share with researchers coming North, as well as works with Northern training programs to facili�tate northerner participation in the development, design and delivery of health research projects that can be run in communities by community members. Representatives from Nunavut Tunngavik Inc., the Nunavut Association of Municipalities, the Nunavut Re�search Institute and the Dept. of Health and Social Services, youth and community members are currently involved in the initiative and are members of the Board of Directors. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 1 Funding For the initiatives described in this report, the Qaujigiartiit/Arctic Health Research Network received funding from • the Tri-Territorial Health Access Fund • the Canadian Institutes for Health Research Team Grant (University of Toronto) • the Isaksimagit Inuusirmi Katujjiqatigit Embrace Life Council We are grateful for the financial support contributed by these organizations, without which the Arctic Health Research Network would not be able to operate. Board of Directors The Qaujigiartiit/Arctic Health Research Network - Nunavut is guided by a board of directors comprised of the following 6 members: • Nunavut Association of Municipalities, represented by Lynda Gunn • Nunavut Tunngavik Incorporated, represented by Virginia Qulaut Lloyd and Laakuluk William�son • Nunavut Dept. of Heath and Social Services, represented by Andrew Tagak Sr. • Nunavut Research Institute, represented by Carrie Spavor and Jennifer Wilman • Sarah Jancke, Youth Representative • Jodi Durdle, Community Member Representative The board of directors met 3 times in 2007-08 in Iqaluit, including an AGM in June 2007. The board of di�rectors has been very involved in the work of Qaujigiartiit/AHRN-NU and it is a pleasure to work together on community health and health research initiatives. Vision for 2007-08 The vision for the Nunavut network site was to build our connections with community members; provide opportunities for training in health research-related fields; create an environment of open learning and shar�ing in terms of community health and research knowledge; conduct a review of community ethical guide�lines for health research and collect community input on health research ethics protocols; examine health information communication and knowledge synthesis and translation in the North; and support community�driven research projects. The activities we undertook in order to address may of these goals included: • Delivering workshops • health research ethics (Rankin Inlet, NU, November 2007) • Proposal writing (Cambridge Bay, NU, February 2008) • Holding a community consultation with participants from across Nunavut Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 2 • Rankin Inlet, NU (November 2007) • Giving presentations to partners and at conferences • Pauktuutit Inuit Women’s Association meeting: Sexual Health is Everyone’s Responsibility (Inuvik, NT) • Inuit Tapiriit Kanatami (Ottawa, ON) • National Inuit Committee on Health (Iqaluit, NU) • Ajunnginiq Centre of National Aboriginal Health Organization (Ottawa, ON) • Nunavut Association of Municipalities Annual General Meeting (Iqaluit, NU) • Department of Health and Social Services (Iqaluit, NU and Cambridge Bay, NU) • Arctic Health Research Network – NWT Board Retreat (Shingle Point, NT) • Arctic Health Research Network – Yukon Health Promotion and Planning School (White�horse, YK) • Developing a quarterly newsletter • Making improvements to our website • Conducting community visits • Cambridge Bay, NU (July, 2007 and February 2008) • Rankin Inlet, NU (July 2007 and November 2008) • Holding a Public Health Education Day • Rankin Inlet, NU (November 2008) This report outlines the achievements made in these areas during the past year at Qaujigiartiit/Arctic Health Research Network - Nunavut Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 3 Ethics There exists a need throughout the Yukon, Northwest Territories and Nunavut to increase capacity to address issues of health research ethics, and in each territory the needs are diverse. This desire to participate in health research underscores the need for community members to better under�stand and share their perspectives on health research ethics, and particularly CIHR’s guidelines for the ethi�cal conduct of health research in the North. It also highlights the need for the three territories to collaborate to address issues of capacity in ethical review of health research projects conducted in the North. This final report outlines the year 1 activities conducted as part of a 3-year tri-territorial grant from the Tri�Territorial Health Access Fund (THAF). It is our hope that the ideas discussed in this paper can be reviewed, discussed and individualized by com�munities, organizations and government so that we may work collaboratively to improve and support ethical review in the North. Basic principles in health research ethics The basic principles of ethical health research generally include autonomy, nonmaleficence, beneficence, and justice as touchstone principles for conducting ethical review of health research proposals (1). Respect for autonomy is based on one’s right to self-determination, which is generally implemented through ‘informed consent’. Participants are seen as free-thinking individuals who must be informed about the pur�pose of the research, the possible harms and benefits associated with participating, processes to protect con- fidentiality and privacy, how the data will be used, participant rights and responsibilities, and withdrawal procedures should participants ever wish to withdraw. Once potential participants fully understand the scope and purpose of the research, they are considered enabled to make an “informed” decision about whether to participate. Non maleficence (the principle of doing no harm) and beneficence (the obligation to do good) are opera�tionalized through processes of “minimizing harm” and “maximizing good” in research. Research proce�dures that knowingly harm individual participants are always unacceptable. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 4 Finally, the principle of justice means that all members of society should assume their fair share of both benefits and burdens of health research. It is unacceptable to coercively target vulnerable groups (e.g. chil�dren) or, without good reason, to ban a whole group (e.g. women) from studies that might benefit them. These principles maintain that morally acceptable ends and means should guide all research methodologies and processes. Ethical dilemmas are a continuing problem in health research. Particularly, a focus on “individual ethics” has left some communities vulnerable to risks, for example, research conducted to advance academic careers at the expense of communities; wasting resources by selecting community-inappropriate methodologies; com�munities feeling over-researched, coerced or misled; researchers stigmatizing communities by releasing sen�sitive data without prior consultation; and communities feeling further marginalized by research (1). Finally, a particularly damaging effect of traditional research is that researchers often do not give back to communi�ties. Most blatantly, findings are not shared with community members, and more commonly, researchers have done little to build capacity within communities. The Arctic Health Research Network is playing a larger role in building community capacity for meaningful engagement with researchers coming to northern communities in an effort to change the power imbalance inherent in northern health research of the past. In addition, as is described in the following section, AHRN can play a role in the development, application and promotion of ethical guidelines for best practices in northern health research. It is our hope that the work conducted for this paper will provide the foundation upon which we continue to build ethics capacity in the North. Goals of the AHRN Tri-territorial Ethics Project Arctic Health Research Network (AHRN) in each territory has a mandate to serve as a resource centre for health research activities and to seek opportunities for educational partnerships in health research with a focus on Inuit, First Nations and other northerners’ health issues. As an organization designed to assist in the creation of community driven, northern lead, health and well�ness research units, AHRN has a role to play in the development, application and promotion of ethical guidelines for best practices in northern health research. The AHRN in each Territory is managed by a Board that is independent from the Boards in the other 2 territo�ries, facilitating responsiveness to Territory-specific issues and priorities, including ethics. Communications are maintained between the three sites through regular communications between staff and an annual face to face meeting of Board Chairpersons and Executive Directors, contributing to the development of pan�Territorial outcomes such as this report. To address these mandates, literature reviews, community consultations and educational workshops are an imperative part of the process of gathering information on community needs and involving community members in issues of health research. The goals of this project were to (See Appendix A): Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 5 1. Develop a tri-territorial strategy for ethical review of health research involving Indigenous peo�ples • created a tri-territorial Advisory Committee to guide Arctic Health Research Network’s ethics-related projects 2. Conduct a survey of existing ethical guidelines and literature that are relevant to northern popu�lations. 3. Evaluate community capacity to provide input on ethical review of health research projects by • generating discussion among community members and organizations about health re�search ethics and how to work together to address our capacity needs • conducting consultations on health research ethics and Inuit/community perspectives on what it means to be ethical in research 4. To develop a draft of a Health Research Ethics Checklist for community proposal reviewers. 5. To consult communities about health research priorities in each region. Common Themes Across the Territories Licensing Yukon From a Yukon Territorial government perspective, licensing of scientific research in the Yukon is legislated through the Yukon Scientists and Explorers Act, and is administered through the Heritage Branch of the Terri�torial Government’s Department of Tourism and Culture (2). There is no specific reference to health research in this Act. The Act includes conditions applicable to all li�censes, requirements to comply with the license, handling of specimens, reference to regulations which may be developed, and the penalty for violating the provisions of the Act, which includes the possibility of a fine of $1000 or imprisonment of six months, or both fine and imprisonment. The application for this research license includes the following elements for the description of the project: • Title of project • Confirmation of consultation with Yukon First Nation(s) in whose traditional territory the re�search will be conducted. Include individual(s) contacted and date of contact. Attach any letters of approval or support to the application. • Location(s) of area(s) of study (include N.T.S. map references) • Schedule and dates of field work. • Purpose and objectives of research project • Proposed research plan and methodology • Significance of proposed project • Relation of project to previous work or other work in progress. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 6 • Expected completion date (i.e. date of final report) In all cases, applications to conduct research on specific traditional Yukon First Nation lands are reviewed and approved or not by the appropriate First Nation Government or Governments. In addition, the Whitehorse General Hospital (WGH) has an Ethics Committee for clinical research activities conducted at WGH. Their Vision is “To become the leader in healthcare ethics in the Yukon”, and their Mis�sion “recognizes and responds to issues which create ethical and moral dilemmas and promotes discussion of these through multi-disciplinary partnerships; and promotes an ethical work environment, which inte�grates ethical principles and values“ (3). The Terms of Reference, Principles, Values, and Research Protocol are available upon request. Northwest Territories and Nunavut The NWT and Nunavut share the same Scientists Act. The processes for licensing a research project are out�lined in the Scientists Act in Nunavut and the Northwest Territories. In addition, in the NWT there is a hospital-based ethics committee and a college-based ethics committee specifically for the nursing program. For licensing, researchers are required to fill out a license application and submit their proposal with a 1 page summary in the appropriate local language where they will be working to the territorial research insti�tute. The intent at this point is to afford local stakeholders and community and territorial representatives with an opportunity to review and evaluate the proposed research study. After a defined period of time, feedback is collected and sent to the researcher at which point they are asked to make suggested changes to their plans or are granted a license by the Science Advisor to cabinet (typically, the Executive Director of the local research institute). In all regions of the North, power relationships between Indigenous communities and scientists are played out in various contexts, from environmental management, to land claims, to health research. Gearhard & Shirley (2007) argue that the research licensing consultation process under the Scientists Act in Nunavut has emerged as an important forum for negotiating power relationships between communities, scientists, and regulatory agencies in Nunavut (4). However, the authors highlight, communities and researchers alike are often unclear about what it entails, and in particular, about the role community agencies play in the license application review and approval process. Local reviewer feedback helps to inform the Science Advisor about community concerns and potential risks/benefits of each proposed project, but the final decision to approve or reject a license application or set the terms and conditions included in the license ultimately rests with the Science Advisor alone. The Scientists Act suggests that research license applications may only be denied when the Science Advisor determines that the research will result in negative social or environmental impacts. The failure of a project to provide some desired socioeconomic benefits is not sufficient grounds for withholding a license, accord�ing to the current interpretation of the Act. Licenses may only be withheld when the Science Advisor decides there is documented, legally defensible evidence that the proposed project would have negative effects on the well-being of people or the environment. However, the Act does not make it clear how local concerns Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 7 are to be written/worded or proven in order to satisfy the Science Advisor that a license should not be issued. The Research Institutes makes every effort to facilitate communication between researchers and communities aimed at resolving disputes and reaching a mutually acceptable compromise over proposed research. Clarifying research policies is one step to improving relations between scientists and communities. In addi�tion, steps need to be taken at both policy and project levels to train researchers, educate funding programs, mobilize institutions, and empower communities, thereby strengthening the capacity of all stakeholders in northern research (4). Principles of Respect In terms of ethical health research in the North, it is important that it: • Be based on trust, traditional values, respect, honor, honesty, • Take a holistic approach to health, where the whole person is considered in the maintenance of wellness and treatment; • Be connected to the mental, physical, spiritual, emotional and social aspects of health and well being of individuals and communities; • Consider factors such as the impacts of housing, economy, education and culture, food insecu�rity; • Take a broader inter-relationship approach to treating a person or maintain health and of the whole family, community • Be respectful that Knowledge is historically passed down by generations through stories, songs and traditional practices. Meaningful Engagement From a Yukon First Nations’ perspective, ethics and meaningful engagement in activities related to their health and well-being are inherently linked to the settlement of specific land claims: Land Claims are commonly thought to have started in 1973 with the presentation of Together Today for Our Children Tomorrow to Prime Minister Pierre Trudeau in Ot�tawa by Elijah Smith and a delegation of the Yukon Chiefs. However, Yukon claims had been put forward as early as 1901 and 1902 when Chief Jim Boss of the present�day Ta'an Kwach'an and surrounding area, wrote letters to the Superintendent Gen�eral of Indian Affairs in Ottawa and to the Commissioner of the Yukon. Jim Boss clearly outlined the concerns being felt by many of his people in terms of the aliena�tion of lands and resources in their traditional areas and their need to have a say in Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 8 their own affairs and governance. So it is clear that prior to 1973 Yukon First Nations have had long outstanding claims dating back to the time when some of the early effects of the Klondike Gold Rush and development in the Yukon were first being experienced by Yukon First Nations people. - Council of Yukon First Nations (5) In recent years First Nations in Canada have been engaged in developing their own research protocols, in�cluding in the Yukon. The Yukon First Nations (YFN) Heritage Group has developed a backgrounder to help First Nations communities (both self governing and non-claim settled) develop their own unique traditional knowledge polices, particularly as they relate to traditional ecological knowledge. The major points of the traditional knowledge policy framework are to be a guiding tool to assist First Nations in developing their own policies. For this reason, traditional knowledge and intellectual property rights in relation to research in the Yukon are controlled by each First Nation Government, in their development and implementation of pro�tocols. In Nunavut, participants in community consultations held over the years have indicated very strongly that Nunavut communities continue to be ‘researched’ without appropriate consultation. They also indicated that it is in the researchers’ best interests to consult, as they will obtain more complete and accurate pictures of the phenomenon being studied. In terms of how consultation plays a role in ethics, (6) propose that there are ethical goals in mind when a community is consulted: • Enhanced Protection (of the community): Consultation may be a particularly effective way for investigators to work with community members to identify individuals or subgroups with par�ticular needs or vulnerabilities that individuals outside the community may not recognize. • Enhanced Benefits (for both): Communities should be involved in identifying research questions and planning studies in order to conduct studies that benefit the particular communities in�volved. Enhancing the benefits to ensure that research is mutually beneficial, for example – the community can advocate for additional services or training as part of engaging with the re�searchers. • Legitimacy (of the research): By working in partnership, a forum will emerge in which commu�nity advisory members may discuss their views and concerns openly with researchers. • Shared responsibility (community-researcher): Community advisory committees can be in�volved in recruitment, endorsement, dissemination and raising awareness. Sharing of responsi�bility does not constitute the shifting of blame or removal of responsibility from investigators, sponsors or institutional review boards. The degree to which responsibility can be shared is lim�ited by the degree to which investigators and sponsors are sensitive to and accommodate those concerns. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 9 Appropriate research methods Health research methods are many and varied. Epidemiological methods, statistical research, qualitative and quantitative methods, and community-based participatory research. Each methodology helps answer specific questions. Participatory Action Research (PAR) and Community-based Participatory Research (CBPR) are two research paradigms that have come about as a way to address the ethical concerns of communities that have experienced “helicopter” research in the past. In the past, researchers frequently had exclusive control of the research process and use of the results. Participatory research attempts to break down the distinction be�tween researcher and subjects and to build collaboration between the parties (7). Participatory research usu�ally defines a research inquiry which involves: 1) some form of collaboration between the researchers and the researched; 2) a reciprocal process in which both parties educate one another; and 3) a focus on the production of local knowledge to improve interventions or professional practices. Community-based participatory research is a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities (Kellogg Foundation Community Health Scholars Program, 1). The process of community-based identification of issues of impor�tance for research can be time consuming and labor intensive. In the North, the distances between commu�nities and the many pressing issues facing communities pose challenges to this essential first step of CBPR. Although sensitivity to vulnerable participants is integral in CBPR, a different set of ethical issues may emerge that require consideration (Flicker), such as: • Community conflict: It is often difficult to find appropriate “community representatives” who will advocate on behalf of general community concerns. Sometimes it may be important to ob�tain consent at a community level from respected or elected leaders. This may cause conflict when community leaders and members disagree on the importance of a research issue. • Compensation: Given the time and effort expended by community members on CBPR teams, there may be an ethical imperative to ensure that adequate compensation exists for all team members. Unfortunately, little or no incentives are provided to either the individual respondent or community representatives (e.g. the host organization or health centre) to acknowledge the time contributed to a project. This further disempowers individuals and communities by sug�gesting their time, energy, and resources may be of little worth, and they should participate simply because they have been invited. • Sensitive Information: Ethical issues may arise in regards to releasing or disseminating sensitive or unflattering data. Academic partners may feel the need to publish and stay true to the “ob�jective” nature of the data. Community members may fear that unflattering data may stigmatize their communities. Consequently, they may request that researchers consider the potential re�percussions to the community if the data are released prematurely or in an insensitive manner. These issues can potentially be addressed through a community research agreement, as discussed in Section 5 of this report. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 10 While community-based research methods are promoted for research where the community is involved, re�search ethics boards do not take into consideration important aspects of this methodology when assessing proposed projects. In a review of forms and guidelines from American and Canadian research ethics boards at institutions with a public health program, Flicker, et al., (2007) found that a great proportion of the guide�lines did not include evaluation of important components of a community-based participatory research pro�ject. For example, none (n = 30) queried community involvement in defining the research problem, asked about hiring practices, or examined what community capacity building opportunities there might be throughout the research process. Only one institution asked how unflattering data might be handled, but this had more to do with adverse events in medical research than the potentially stigmatizing results of socio�behavioural research. Only 5 institutions asked about plans for disseminating the results, and of those, none asked about procedures for terminating a study or vetoing publication based on community concerns. This is very important consideration for community-based research in the territories, as the licensing process in each territory is completely dependent upon ethical review conducted at the researcher’s academic institu�tion. Finally, while community-based research methods have emerged as an important way to address ethical concerns of communities, they are not always an appropriate method. Other research methods are equally important when they are addressing community-led research questions or when communities are provided with an option to proceed with a community-based research approach or not, as articulated in the CIHR Guidelines (9). Ownership, Control, Access and Possession (OCAP) of data The principles of OCAP (Ownership, Control, Access and Possession) are important to the ethical conduct of research involving northerners and northern Indigenous peoples. These principles have been advanced through the Assembly of First Nations (8), the National Aboriginal Health Organization and others. The OCAP principles were adopted by the Council of Yukon First Nations Chiefs Leadership resolution (LDR Resolution NO782./06) passed in October 2006 which stated the following: Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 11 Andrew Qappik, Uqqurmiut Centre Panniqtuuq, Nunavut Weaving, Uqqurmiut Centre Panniqtuuq, Nunavut Andrew Qappik, Uqqurmiut Centre Panniqtuuq, Nunavut • OCAP protects communities from researchers coming in and leaving with data without sharing the information; • OCAP protects the First Nations from conclusions that are reached without consideration on all the context or input from First Nations; • OCAP enables First Nations partners and experts; • In the past, researchers have treated First Nations as only a source of data; • Research has been damaging in the past in instances where genetic material was used, sensitive information was published and confidential cultural information was shared inappropriately; • OCAP will enhance Yukon First Nations control and capacity and lead to more useful and reli�able information that will benefit Yukon First Nation communities, enable more informed deci�sions and create better results; • OCAP also enhances self-determination. It is within the context of these principles that ethical research protocols have already been developed by some First Nations governments in Yukon, and that will guide the development and implementation of these agreements now and in the future. Additionally, these protocols can include requirements for additional information and conditions. The re�searchers must: • Address issues that are common to all Indigenous peoples such as ownership, consent, control, access and protection of information and samples • Outline how the project will directly benefit the community • Have a detailed communications strategy • Identify what infrastructure will be required • Identify who will own the data and where it will be stored • Identify if there will there be capacity building/training involved • Identify if there will be economic benefits for the community • Identify if there will there be samples of species taken, what will be done with them • Follow Traditional Knowledge protocols for Indigenous peoples • Include a list of partners and agencies involved • Identify what the final product will be, and that it will be in a format useful to the community • Includes knowledge of the people in the Traditional Territory/region/land area in a respected way. Many of these conditions can be outlined in a community-researcher research agreement. For a community�based participatory research project in Kahnawahke, Macaulay, A.C., et al, (7) developed a 7-page ‘code of ethics’ document, or research agreement, that included a policy statement; principles of participatory re�search; the different between community-based and academic researchers; the obligations of researchers and the community; data ownership; the process of incorporating new investigators; and the procedure for joint dissemination of results including dissension if necessary. Inevitably, the nature of relationships and questions of ownership are complex factors that must be negotiated in each setting as need arises. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 12 Sharing knowledge and communicating results Results should be returned to the community in a format that is useful and understandable, such as through community radio, through community presentations, posters and informative pamphlets if appropriate, hold�ing open forums and presentations in the community and/or visiting and speaking in schools, etc. Sometimes researchers have published without consulting the community, resulting in negative conse�quences from publications where communities had no opportunity to correct misinformation or to challenge interpretations. Macaulay, et al. (7), included a statement in their community-researcher code of ethics that read: “No partner can veto a communication. In the case of disagreement, the partner who disagrees must be invited to communicate their own interpretation of the data as an addition to the main communication, be it oral or written. All partners agree to withhold information if the alternative interpretation cannot be added and distrib�uted at the same time, providing the disagreeing partners do not unduly delay the distribution process.“ Macaulay A., et al, (7) This type of agreement may be a way forward in dealing with such issues and encouraging the sharing of information, provided all parties agree to it. Forming a Tri-territorial Ethics Advisory Committee The projects outlined in this report were guided by a tri-territorial advisory committee that was formed by the Arctic Health Research Network. The Committee has 8 representatives: 2 from each territory and 2 national representatives who have worked in the field of health research ethics in Canada’s North. The committee discussed issues related to • health research ethics review in the North; • community-research agreements; • were invited to review the health research ethics checklist for community proposal reviewers; • shared literature, perspectives, experiences and expertise pertinent to health research ethics review in the North This committee met primarily by teleconference and email, with plans for a face-to-face meeting for the fol�lowing fiscal year. A list of the members of this committee and the Terms of Reference are provided in Appendix A and B. Reviewing community, territorial and national guidelines and literature for ethical conduct of health research Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 13 A number of guidelines, articles, and reports were gathered from communities, territorial and national or�ganizations and other sources to assess what resources are available for communities. A list of the literature consulted for this report is listed with the reference section of this document. Developing a health research ethics checklist for community proposal re�viewers The development of this tool was undertaken at the request of several community-based health research eth�ics proposal reviewers in Nunavut. The checklist is meant to be a guide in assisting community proposal re�viewers to assess the ethical content of any health research project that is proposed to take place in their community. The checklist includes important questions about: • community consultation and engagement in the research project • assessing risks and benefits to the community/individual • community research agreements • sharing knowledge gained (dissemination) at the end of the project • research methods • confidentiality • conflicts of interest • advertisements and recruitment • participant withdrawal • financial or other compensation • consent forms • scientific review • other comments The checklist can also be helpful to those engaging in research review at the territorial level. The checklist has been reviewed by stakeholders in Nunavut; the AHRN Ethics Advisory Committee; the Inuit Health Re�search and Planning Winter Institute students (CIET Canada); and others. A draft of this checklist is provided in Appendix D. Reviewing community-researcher research agreements in the territories It has become a common practice for researchers to engage a community in a research project through a community-researcher research agreement. These contracts outline the responsibilities of the community member(s) involved and the researcher for the duration of the study period. They are signed by both a com�munity member and by the researcher. A template for a research agreement is available as an appendix in the CIHR Guidelines for the Conduct of Research with Aboriginal Peoples (9), developed by the Centre for Inuit Health and the Environment (CINE) at McGill University. Some communities have developed their own agreements/contracts for researchers, or researchers have developed innovative ‘codes of ethics’ in partnership with a community (7). Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 14 This topic is discussed further, below, in the section titled “Exploring Regional Capacity in the NWT”, how�ever, it requires further exploration across the territories to investigate such issues as local power dynamics; who speaks for the community when negotiating such agreements; how research agreements can be devel�oped; and others. Gathering Inuit and community perspectives on ethics As described in an earlier section, the licensing process in Nunavut is the singular process or reviewing and providing feedback on health research projects, unless the researcher conducts consultations with the com�munity in advance. The license is reviewed by Nunavut Tunngavik Inc., the Research Committee of the Dept. of Health and Social Services, the municipal council of the community involved, and other stakeholders as the topic requires. One of the concerns related to this process is that very often community members or the local municipal council either do not have adequate resources to evaluate the license or the time to do so given other obligations. In addition, due to the high turnover of staff in Nunavut, there are not always enough human resources at the various government and territorial organizations to ensure timely and thor�ough review of licensing applications. Nunavut Ethics Workshop Before the release of the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples (9), the document underwent widespread consultation across Canada. Agencies in every Canadian province and territory were consulted about the document – except for Nunavut. In order to engage in a dialogue on ethi�cal health research practices on more even footing, it was imperative that community members be invited to have their say on ethical conduct of health research in Nunavut. Evaluating capacity in Nunavut begins with discussions on what it means to be ethical from an Inuit and community perspective. For this reason, Qaujigiartiit/AHRN-Nunavut has conducted two consultations on health research ethics: 1) in Iqaluit, NU in 2006 on the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples and 2) in Rankin Inlet, NU in 2007 to continue the dialogue on Inuit and community perspectives on health research ethics (14-16). Information from this meeting in provided in Appendix C. The perspectives shared at these meetings primarily related to community values and respecting their role in ethics evaluation. Participants felt that it was unethical for researchers to not make efforts to build trusting relationships with community members and/or to reduce the power differential between researchers and community members through training, dialogue and other means. Participants at our workshop highlighted several important themes in community-based research they felt were not only methodological considerations that they would like to see enhanced, but ethical considera�tions from the perspective of the community: • Respect for the community • Trust and building relationships • Use of appropriate research methods • Equality, equity and power • Ownership of data (including samples) Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 15 • Sharing of knowledge gained from research • Information about research processes These feelings underscore a comment made by Martha Flaherty (past President, Pauktuutit Inuit Women’s Association) at a workshop in Inuvik in 1995 held to bring researchers, organizations and community repre�sentatives together to discuss issues of health research ethics: “Real participatory research must include Inuit control over the identification of ar�eas and issues where research is needed and the design and delivery of the method�ology. Inuit would participate in the collection and analysis of data and have equal control over the dissemination of the information and research findings. In my view, anything less is not participatory and it is unfair to call it such.” - Martha Flaherty, 1995 (10) During discussions, ‘Inuit ethics’ were discussed by our participants and it is important to note that partici�pants requested more dialogue with elders in future discussions about ethics in Nunavut, which Qaujigiartiit/ AHRN-NU will make every effort to support. Research, Respect and Building Capacity: Negotiating relationships and working together Participants in the Nunavut workshops highlighted the importance of respect and partnership between re�searchers and communities in northern research. They felt that spending time to develop relationships re�lieves stress for both researchers and community and creates a pleasant environment in which to work. Participants made suggestions they felt would help facilitate a participatory process: • consulting community members, especially elders, in addition to community leaders • researching a topic of importance to the community • including community members in the conduct of the research by hiring local knowledge hold�ers or training local research assistants • providing local training opportunities when appropriate They also highlighted that communities need to be more aware of their rights to make requests of researchers and negotiate the terms of the research being conducted in their community. Participants noted that by work�ing in partnership, researchers and community members can get to know each other, share worldviews and exchange knowledge in a meaningful and respectful way. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 16 Improving participatory relationships has also been discussed quite extensively in the literature (1-7, 9-13)). Kaufert et al, (10) describe discussions at a meeting in Inuvik in 1995 where the members of the research community and members of the Canadian Indigenous community met to discuss health research ethics and communities. At this meeting, all parties agreed to focus on the importance of developing a more participa�tory process and that both sides would work together to: • define research problems and obtain funding • train and involve community members in data collection • ensure the participation of community members and organizations in the analysis and interpre�tation of research findings • develop joint control over the dissemination of results Since that time, some progress has been made, particularly with the publication of the CIHR Guidelines for the Conduct of Health Research With Aboriginal Peoples (9), which are quickly becoming the gold standard guiding document. In addition, the Nunavut Research Institute and Inuit Tapiriit Kanatami have recently re�vised and published a document entitled Negotiating Research Relationships with Inuit Communities: A Guide for Researchers (17). This progress is exciting and encouraging, and we hope to foster its continuation. Information about research processes Participants in the Nunavut workshops indicated that community members need more information about the research process in Nunavut, including how projects are licensed; who in the communities and territory are consulted during the development of the research project and during licensing; and how to increase com�munity involvement in the research process from start to finish. In order to continue to build capacity for ethical review in Nunavut, communities need to be well informed of their rights, their opportunities to have input on projects proposed to take place in their communities, and key ethical considerations for the conduct of research in their communities. While there has been some dis�cussion within AHRN’s consultations of the development of a northern-based ethical review board, it has become clear that while there is tremendous ability to provide ethical review, there is a dearth of capacity (in the form of community health committees, staff and staff time, small populations, previous engagement with research projects) to support such a board from Nunavut at this time. It is hoped, however, that this will improve over time with increased opportunities to build northern capacity for ethical review, including those provided by Qaujigiartiit/Arctic Health Research Network - Nunavut. Recommendations for ethical review The responsibility for ethical review in health research is usually assigned to university-based human sub�jects committees. As noted earlier, this is particularly the case in the North, as an ethical review is not con�ducted in any of the three territories – the licensing process, described earlier, is completely dependent upon university-based ethical review boards. The university-based committees usually do not have first-hand knowledge of local conditions, local needs or priorities, which can reduce the effectiveness of their review in a northern context. It has been noted in the literature (1,10) that central scientific and ethical review proc�esses have limited capacity to assess potential local relevance of the research product. It has been proposed Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 17 that the central criteria for assessing the distribution of risks and benefits should be “whose interest does the research serve” (10. A concern in relation to reliance on non-northern-based ethical review committees (REBs) was their lack of local knowledge base, which limited their capacity to judge whether the process used to obtain community consent and participation was meaningful in local terms (10). Given the information gathered from the literature, and experiences gathered from consultations within the Arctic Health Research Network in the 3 territories, recommendations for the content of ethical review in�clude: • Community-based Participatory Research Training • Documentation of Processes • Nature of Informed Consent • Community Consultation • Research Agreements There is currently no ethical review process based in the three territories, therefore these recommendations are for institutions involved in ethical review of research in the North, and to be considered when a research ethics review board is developed in the North. CBPR Training Research Ethics Boards engaged in reviewing Community-based Participatory Research (CBPR), and other community-based research proposals, should be provided with basic training in the principles of CBPR (1). Documentation of Processes Research Ethics Boards should require CBPR projects to document the process by which key decisions re�garding research design were made and how communities most affected were consulted (1). Nature of Informed Consent Research Ethics Boards should consider the nature of the community involved in the research project and whether the method of consent (language, written vs. oral, etc.) is appropriate. It has been suggested that if participants are to have access to full information, then all objectives and options, including non�participation, “had to be presented in an accessible format; including oral presentation in community fo�rums, videotapes and documentation printed in Aboriginal languages” (10). The requirements for valid con�sent agreements usually include: (a) demonstration of subject competence; (b) communication of full infor�mation on risks and benefits; (c) assurance that the subject comprehended the information; (d) guarantees that the individual is able to act independently (Freeman, 1994, cited in Flicker, 2007). Consent agreements may need to use alternative media formats including video clips, community meetings, and community ra�dio. Community Consultation Research Ethics Boards should consider the amount of time that has been spent consulting with the commu�nity, and if the partnerships formed are meaningful, i.e. described in detail in the context of the community and its leadership. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 18 Research Agreements Research Ethics Boards should mandate that CBPR projects seeking ethical review provide signed terms of reference, memoranda of understanding, and/or community research agreements. These should clearly out�line the goals of the project, principles of partnership with the community, decision-making processes, roles and responsibilities of partners, and guidelines for how partnership will handle and disseminate data. (1) Finally, Ruttan’s statement (2004) articulates the findings of the Arctic Health Research Network in that: An ethic based in mutual respect, reciprocal collaborative exchange, and an aware�ness of the personal, political and cultural consequences, particularly in light of past relationships, should guide our actions. - Ruttan, 2004 (11) The discussion of community ethics and ethical review will be on-going and continue within the work of the Arctic Health Research Network. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 19 Knowledge Sharing What is knowledge sharing? Commonly, the concept of knowledge translation has been developed to refer to the creation and implemen�tation of a strategy to translate health research results into applicable findings for those requiring the informa�tion. It has evolved conceptually as a means for bridging the “know-do” gap. In the context of Qaujigiartiit/AHRN-NU and the work that is conducted by this organization, Knowledge Sharing is defined as the synthesis, translation and communication of health knowledge between vari�ous knowledge holders, such as policy-and decision-makers; researchers; com�munity members; and health care providers. Knowledge is dynamic and does not flow in a line from top to bottom, but fluidly between people and groups. Literature review Methods This literature review includes: • A review of academic literature. The search was conducted by Janice Linton at the Health Sci�ences Library at the University of Manitoba. The initial scan of literature was conducted by Gwen Healey (Exec. Dir. Of Qaujigiartiit) and relevant articles were then requested and shipped to Nunavut for review by Mandie BzDell (Research Assistant at Qaujigiartiit). • A review of grey literature (reports, conference proceedings, etc.) found on Google and on Goo�gle Scholar. • Findings were read and summarized and are shared in this report. Findings Throughout the review, a number of findings relevant to knowledge sharing in Nunavut were highlighted and are presented below. These topics include: • The need for clearer terminology • The importance of frameworks • Knowledge mapping as a conceptual framework fro knowledge sharing • Knowledge sharing and Inuit community members • Knowledge sharing and policy- and decision-makers • Knowledge sharing and health care providers Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 20 • Knowledge sharing and researchers These topics are further elaborated below in bullet-point form. A more in-depth presentation of these find�ings is available in our final report. The Need for Clearer Terminology • Synonyms for knowledge translation include knowledge translation, knowledge utilization, knowledge exchange, research transfer, research utilization • It is important to have clear terms in order to evaluate effectiveness of knowledge translation The Importance of Frameworks • There is no primary knowledge translation theory – there are several different theories. • One unified theory is required in the knowledge translation field in order to develop testable and probably useful interventions. • Logan & Graham’s Ottawa Model of Research Use – was the most favoured in the literature. • All frameworks emphasize involvement of all stakeholders, and multi-directional flow of informa�tion. Knowledge Mapping as a Conceptual Model for Knowledge Sharing Knowledge mapping: • Makes tacit and explicit knowledge concrete. • May increase involvement of key stakeholders. • Can assist in clarifying the flow of information. • Can be used with all types of knowledge translation. Knowledge Sharing and Inuit Community Members • When conducting health research: • Community members involvement from deciding the research design to disseminating results is essential. • Community members have right to own research and negotiate community needs with re�searcher(s). • Community members may choose to establish an independent advisory and ethical review committee . • In the context of health programming & services, the following Inuit-specific topics were dis�cussed in the literature: • Face to face interactions are important for Inuit. • Storytelling is an integral part of Inuit health information dissemination • Elders are the preferred first line for health information in a number of communities and con�texts. • Inuit see themselves as belonging to the larger Inuit community, irregardless of geography. • There is a shortage of interpreters who can translate health information. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 21 Knowledge Sharing and Decision-Makers • For decision-makers to apply research into daily decisions requires: • A clear presentation of the evidence-based message. • A credible source of research. • Electronic, fast, staged access to information delivery of research message. • Ongoing training for decision-makers on how to use research evidence in daily work is required for effective evidence-based decision-making. • Information about evaluation of knowledge sharing activities is discussed in the literature. Knowledge Sharing and Clinicians • There exists too much research for clinicians to apply in practice. • Knowledge translation is an important tool to close the gap between health evidence and clinical practice. • Most effective strategies at getting clinicians to incorporate health research into practice are ac�tive, multiple, and based on accurate assessment of clinician needs. Knowledge Sharing and Researchers • When conducting research with community members in Inuit Regions: • Follow guidelines offered by CIHR “CIHR Guidelines for Health Research Involving Aborigi�nal Peoples” and by ITK & NRI “Negotiating Research Relationships with Inuit Communities: A Guide for Researchers” • Understand local processes of knowledge creation, dissemination, and utilization. • Use of community-based participatory research to make work responsive to the concerns of communities members. • Build research capacity within the community. • Use of an evaluator to do a variety of process evaluation through research process. • When conducting research with decision-makers • Understand that knowledge translation must be interactive • Identify and understand the barriers for lack of use of research for decision-makers • Use interactive, non-passive forms of knowledge translation • When conducting research with clinicians, it is helpful to consider: • It takes time to build trusting relationships and networks between researchers clinicians • The need to respect for clinicians priorities and interests • Recognition of clinicians’ knowledge and expertise • The need for multi-directional information exchange and an ongoing forum for sharing in�cluding developing a shared language, culture, and conceptual base • The quality of in-person contact is important Gaps in the Literature Several gaps were identified during the literature review, such as: Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 22 • The need for truly community-driven research • The need for evaluation of knowledge translation activities • More information on the use of social network technology and its influence on knowledge shar�ing • In the literature different users groups of health information are described, however, there is no information on the different literacy levels that are examined in these contexts, if any. Community visits and sharing knowledge within Qaujigiartiit Community Visits For the Knowledge Sharing project, community visits were conducted in Rankin Inlet, NU and Cambridge Bay, NU. During these community visits, knowledge sharing was discussed and presentations and workshops were made to various stakeholder groups. A workshop on proposal-writing was delivered to community members in Cambridge Bay, NU as a part of the discussions on knowledge sharing. This was done at the request of community members, and we were happy to be able to meet their needs. A community visit to discuss sharing health information in Cambridge Bay also resulted in the development of a proposal for a community-driven health research project that was initiated and is being conducted by the local youth committee to explore issues of identity and suicide prevention for youth in the community. In Rankin Inlet, a Public Health Education Day was held and a number of community members attended to learn more about community health and receive a flu shot. At this event, community members spoke openly to the attendees about the need for help addressing the issue of nutrition and food security in, not only this community, but across Nunavut. They highlighted that the extremely high cost of market foods was one of the primary influences of poor nutrition in the community. Knowledge Sharing in Qaujigiartiit/AHRN-NU Presentations In the interests of sharing knowledge and improving communication between various agencies working in the North, presentations about Qaujigiartiit/AHRN-NU and the work being conducted by the organization were delivered to: Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 23 • Pauktuutit Inuit Women’s Association meeting: Sexual Health is Everyone’s Responsibility (Inuvik, NT) • Inuit Tapiriit Kanatami (Ottawa, ON) • National Inuit Committee on Health (Iqaluit, NU) • Ajunnginiq Centre of National Aboriginal Health Organization (Ottawa, ON) • Nunavut Association of Municipalities Annual General Meeting (Iqaluit, NU) • Department of Health and Social Services (Iqaluit, NU and Cambridge Bay, NU) • Arctic Health Research Network – NWT Board Retreat (Shingle Point, NT) • Arctic Health Research Network – Yukon Health Promotion and Planning School (Whitehorse, YK) Newsletter In the last year, Qaujigiartiit/AHRN-NU began publishing a quarterly e-newsletter in English and Inuktitut to help facilitate the sharing of knowledge about Qaujigiartiit activities with community members and partners. Print copies are provided at conferences, community meetings and consultations. Website – www.nunavut.arctichealth.ca In consultations with both community and national partners, it becme apparent that several stakeholder groups were consulting the AHRN web site for information. In an effort to improve the sharing of informa�tion, Qaujigiartiit has undertaken revisions to the Arctic Health Research Network web site to facilitate the sharing of documents, community priorities for health research, information about scholarships and other important health news. Teaching Resources In addition, resources from Qaujigiartiit/AHRN-NU community consultations and projects were provided to educators, such as the CIET Inuit Winter Institute in Health Research Planning (Ottawa, ON February 2008) and other researchers who conduct work in Nunavut. Qauj i g i a rti it/Ar c ti c H e a lt h Re s e a r c h N e t w o r k - N un a vut 2 0 0 7 - 0 8 24 !"#$%&'( (ARCTIC HEALTH RESEARCH NETWORK) kNK5 December 2007, Volume 1, Issue 3 kNo7usb5 scsyc6g5 wo6fyE/s5txExo8i4 mo5bs?5gi4 x7ml cspn3i3u4 vq6Oi3u ZW7u, wcl8i x7ml vq6Oi3u. Wzhi4 s9li4 vtmic6t9lQ5 scsycMs6ymJ5 wo6fyE/s/Exo8i4 mo5bs?5gi4 x7ml kNosJ5 bs5gE/q8i4 ck6 grc3m/ 6t5tMs6g5 gryQxDti4 x7ml scsycc5b6gt5 other
PILIRIQATIGIINNIQ ‘Working in a collaborative way for the common good’: A perspective on the space where health research methodology and Inuit epistemology come togetherGwen Healey, Andrew Tagak Sr.

This paper adds to provide Inuit perspectives on health-related research epistemologies and methodologies, with the intent that it may inform health researchers with an interest in Arctic …

Englishᐃᓄᒃᑎᑐᑦ1 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies International Journal of Critical Indigenous Studies Volume 7, Number 1, 2014 PILIRIQATIGIINNIQ ‘Working in a collaborative way for the common good’: A perspective on the space where health research methodology and Inuit epistemology come together By Gwen Healey, M.Sc. and Andrew Tagak Sr. Qaujigiartiit Health Research Centre Abstract Increasing attention on the Arctic has led to an increase in research in this area. Health research in Arctic Indigenous communities is also increasing as part of this movement. A growing segment of the research community is focused on explaining and understanding Indigenous knowledge and ways of knowing. Researchers have become increasingly aware that Indigenous knowledge must be perceived, collected and shared in ways that are unique to, and shaped by, the communities and individuals from which this knowledge is gathered. This paper adds to this body of literature to provide Inuit perspectives on health-related research epistemologies and methodologies, with the intent that it may inform health researchers with an interest in Arctic health. The Inuit concepts of inuuqatigiittiarniq (“being respectful of all people”), unikkaaqatigiinniq (story-telling), pittiarniq (“being kind and good”), and iqqaumaqatigiinniq (“all things coming into one”) and piliriqatigiinniq (“working together for the common good”) are woven into a responsive community health research model grounded in Inuit ways of knowing which is shared and discussed. Acknowledgements The growth development of this model and this centre over time has been a group effort. Valuable guidance, feedback and support has been provided by Shirley Tagalik, Janet Tamalik McGrath and Jamal Shirley in the development of this paper. Key words Inuit, epistemology, health research methods, relational knowledge, Indigenous knowledge. Introduction There has been a significant and increasing amount of attention on the Arctic in terms of research, press, exploration and resource development. Health research and research involving Inuit in Canada’s north has also been increasing. Community-based participatory research is a method that has been promoted, however, even though this methodology recognizes the role of community in the research, it still holds the Western scientific worldview above others. Concurrently, a growing body of literature has focused on articulating Indigenous knowledge and research epistemologies, leading the way for greater discussion of Western and Indigenous research approaches, and contributing to more meaningful research (Alfred 2005; Barnhardt & Kawagley 2005; Battiste 2002; Battiste & JY 2000; Deloria 1995; Kovach 2010; Wilson 2008). This paper adds to this body of literature by providing Inuit perspectives on health-related research epistemologies and methodologies, with the intent that it may inform health research approaches in Arctic communities. 2 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies Inuit are the Indigenous inhabitants of the North American Arctic, whose homeland stretches from the Bering Strait to east Greenland, a distance of over 6,000 kilometres. Inuit live in Russia, Alaska, Greenland and the Canadian Arctic and share a common cultural heritage, language and genetic ancestry. Before contact, small groups of families travelled together to different camps and hunting grounds. In the Qikiqtaaluk1 region alone, for example, Inuit lived in small, kin-based groups in over 100 locations throughout the region 2 (QIA 2012). Of the approximately 150,000 Inuit living in the Circumpolar region today, 45,000 live in Canada’s north. Canadian Inuit lands are known as Inuit Nunangat and comprise four regions: Nunavut Territory; Nunavik (Northern Quebec); Inuvialuit Settlement Region (northern NWT); and Nunatsiavut (northern Labrador). Comprising one-fifth of Canada’s land mass and 60% of the nation’s coastline, Nunavut occupies the largest geographical area of all the Inuit Nunangat. When the Nunavut Act was passed in conjunction with the settlement of the Nunavut Land Claims Agreement in 1993, Nunavut became Canada’s third territory. Nunavut’s new territorial government was formally established in 1999. As the authors of this article are from Nunavut and this is the context with which we are most familiar, the majority of the references in this article are to Inuit communities in Nunavut. Ways of Knowing Epistemology is the theory of knowledge, questioning what knowledge is, how it is acquired, and the extent to which a given subject can be known (Thayer-Bacon 2003, p. 18). Epistemology is also the investigation of what distinguishes justified belief from opinion, particularly with regard to methods, validity and scope. It is the starting point upon which we build our theoretical assumptions. What do we know and how do we know it? Do we know it individually or collectively? Is there more than one way to know something? Do we possess knowledge or do we engage with it? Or both? Epistemology is the space in which these questions are posed and explored. Indigenous Ways of Knowing A growing segment of the academic community is focused on explaining and understanding Indigenous knowledge and ways of knowing. This group recognizes that such knowledge is perceived, collected and shared in ways that are unique to these communities. Battiste (2002) states that the recognition and intellectual activation of Indigenous knowledge today is an act of empowerment by Indigenous peoples. Indigenous peoples throughout the world have sustained unique worldviews and associated knowledge systems for millennia, even while going through social upheavals as a result of transformative forces beyond their control. Many of the core values, beliefs and practices associated with these worldviews have survived and are beginning to be recognized as being just as valid for today’s generations as they were for generations past. The depth of indigenous knowledge rooted in the long inhabitation of a particular place offers lessons that can benefit everyone, from educator to scientist (Barnhardt & Kawagley 2005). In Eurocentric thought, Indigenous knowledge has often been represented by the term ‘traditional’ knowledge, which suggests a body of relatively old data that has been handed down generation to generation relatively unchanged (Battiste 2002). Grenier (1998) offers a view that Indigenous knowledge embodies certain characteristics that are not mutually exclusive, such as: 1 Qikiqtaaluk, meaning ‘big island’, is the Inuktitut word for Baffin Island. 2 The Qikiqtaaluk region is the largest of Nunavut’s three regions: Qitirmiut (western Nunavut); Kivalliq (central Nunavut and Belcher Islands); and Qikiqtaaluk (Baffin Island, Ellesmere Island and neighbouring communities). 3 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies 1. Indigenous knowledge is accumulative and represents generations of experiences, careful observations and ‘trial and error’ experiments. 2. Indigenous knowledge is dynamic, with new knowledge continuously added and external knowledge adapted to suit local situations. 3. All members of the community, that is elders, women, men and children, have Indigenous knowledge. 4. The quantity and quality of Indigenous knowledge that an individual possesses will vary according to age, gender, socioeconomic status, daily experiences, roles and responsibilities in the home and the community, and so on. 5. Indigenous knowledge is stored in people’s memories and activities. It is expressed in stories, songs, folklore, proverbs, dances, myths, cultural values, beliefs, rituals, cultural community, laws, local language, artefacts, forms of communication and organization. 6. Indigenous knowledge is shared and communicated orally, as well as by specific example and through cultural practices, such as dance and rituals (Grenier 1998). In addition, Battiste (2002) also describes Indigenous knowledge as embodying a web of relationships within a specific ecological context; containing linguistic categories, rules and relationships unique to each knowledge system; having localized content and meaning; having established customs with respect to the acquiring and sharing of knowledge; and implying responsibilities for possessing various types of knowledge. Knowledge can be viewed as being something that people develop as they have experiences with each other and the world around them (Thayer-Bacon 2003). Ideas are shared, changed and improved upon through the development of understanding and meaning that is derived from experience. Fundamentally, this knowledge is rooted in a relational epistemology—a foundation for knowing that is based on the formulation of relationships among the members of the community of knowers (Thayer-Bacon 2003, pp. 73-98). Through these relationships, knowledge is created and shared. Relational Epistemology Chilisa (2012) states that Knowing is something that is socially constructed by people who have relationships and connections with each other, the living and the non-living and the environment. Knowers are seen as beings with connections to other beings, the spirits of the ancestors, and the world around them that inform what they know and how they can know it. (p. 116) A relational epistemology draws our attention to relational forms of knowing. This differs from the common Western practice of focusing on individual descriptions of knowing. Knowing is informed by the multiple connections of knowers with other beings and the environment, by participating in events and observing nature, such as the birds, animals, rivers and mountains (Thayer-Bacon 2003, p. 183). Wilson (2008) and Getty (2010) identify that knowledge comes from the people’s histories, stories, observations of the environment, visions and spiritual insights. Each of these relationships has implications for how research is conducted. 4 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies Relations with people Relationship building is an essential aspect of everyday life experience for Indigenous communities in Canada and around the world. Greetings become a way of building relationships and the rapport among participants and researchers—and readers. From the moment of the first greeting, we are inevitably placed in a relationship through mutual friends or through knowledge, with certain landmarks and events. We become part of the circles of relationships that are connected to one another and to which we are also accountable (Deloria 1995) (emphasis added). From a relational perspective, establishing trust and accountability is part of the development of a relationship with a colleague or research participant (Kovach 2009; Wilson 2008), which then feeds into the entire research method, from establishing rigour to respecting an ethical Indigenous knowledge framework to sharing and disseminating the results of a study. Relationships with the land or environment Many Indigenous peoples have a physical, emotional and spiritual connection with the land, the environment and the creatures who share this space. For example, a study of Inuit women’s perceptions of pollution found that those women identified with pollution of the land being linked to mental health and wellness in the community (Egan 1998). From the perspective of participants, changing relationships with the land carried over into changing relationships in the community and substance use, ultimately affecting the health of the community overall. The Indigenous relationship with the environment and land also has implications for the way research is conducted. The construction of knowledge has to be done in a manner that builds and sustains relationships with the land and environment, and is respectful of the environment (Barnhardt & Kawagley 2005; Chilisa 2012; Getty 2010). In this context, knowledge is embodied in a connection to the land and the environment. When interviews are used as a technique for gathering data, it is best to conduct them in a setting that is familiar to the research participant and relevant to the topic of the research (such as their home, on the land or in a comfortable community space); this enables the researcher to make connections with the environment and the space where the construction of knowledge takes place. Relationships with the spirits Spirituality may include one’s personal connection to a higher being or humanity, or the environment (Wilson 2008). Spirituality can be viewed as a connection or exercise that builds otherworldly relationships that are ceremonial in nature. Recognizing spirituality allows researchers to explore the interconnections between the sacred and practical aspects of research. Understanding comes through factual and oral history that connects to ancestral spirits (Chilisa 2012) and/or through dreams (Wilson 2008). Knowledge is also regarded as a sacred object and seeking knowledge is a spiritual quest that may begin with a ceremony (Wilson 2008). Knowing can come through prayer or dreams, as a way that people connect themselves with those around them, the living and the non-living, and the ancestral spirits. In this way, the mind, body and spirit are all involved in gathering information and understanding of the world. Inuit Ways of Knowing Much of the work involving Indigenous research perspectives originates from First Nations, Native Americans and Indigenous peoples in Australia and New Zealand. Very few Inuit are in academia and no work in published literature to date has provided an Inuit perspective, except for Janet Tamalik 5 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies McGrath (2011), which is the first academic work that articulates an epistemology that is unique to Inuit. McGrath’s (2011) work with the well-known and respected elder, Aupilaarjuk, focused on conveying an epistemological perspective for Inuktitut (Inuit language) knowledge renewal. Given the relational knowledge perspective of Inuit, revitalization of relationships is part of renewing and sustaining Inuit languages. The language is which knowledge is conveyed is critical to the understanding of the knowledge that is conveyed because of the shared relationships between people speaking the language. McGrath and Aupilaarjuk’s collaboration conveys a great understanding of Inuit philosophical and ideological concepts. Relational Methods for Health Research in an Inuit Context A relational paradigm begins with the relationships between people as an important aspect of a research framework and employs an inclusive approach, rather than rejection. A holistic, relational perspective is integral to Inuit ways of knowing, but how is this actualized in the research setting? In the following section, Inuktitut conceptual ideas related to health research methods and practices are shared. Inuuqatigiitiarniq Inuuqatigiittiarniq is the Inuit concept of respecting others, building positive relationships and caring for others. When each person considers their relationship to people and behave in ways that build this relationship, they build strength both in themselves and in others, and together as a community (Karetak 2013). This is foundational to Inuit ways of being. Intentions and motivations. In the health research context, part of building and fostering respectful relationships is clearly articulating one’s intentions and motivations in engaging in a study. Researchers need to be reflexive and ask themselves the questions that community members will inevitably ask them: Who are you? Where are you from? Who is your family? What are you looking at? Why do you want to know about it? What are the risks and benefits of pursuing this work? Who is it being conducted for? What will happen to the knowledge that is shared? How will we learn from each other? A commitment to an approach that is mindful of and focuses on Inuit context, knowledge, questions and perspectives is an integral part of demonstrating respect for the community at large. Community context. Whether one is from the community where one is working on a research project or not, an awareness for and understanding of the community context is part of acknowledging one’s respect for it. Engaging with people, place and community in a meaningful way will not only increase one’s own understanding of the community context, but also contributes to a richer understanding of the findings. For example, whether a community has a historical connection to a residential school or is currently experiencing a flurry of resource development, the community context and response to such events plays a role in wellness and in relational ways of knowing. 6 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies The formation of the question(s). Having created a descriptive picture of community contexts and understandings, as well as one’s own intentions and motivations, it is easier, now, to collectively develop the research questions on which the research will focus. Focusing a study in such a way that it will answer community health questions is part of being responsive to the needs of Inuit communities. Developing and fostering relationships. The development and fostering of relationships has been a focus of the natural science research community in Nunavut, and some published literature has focused on this (ACUNS 2003; Gearheard & Shirley 2007; ITK & NRI 2007). Sadly, research relationships are too often characterized at the outset by conflict, impatience and animosity; sometimes these barriers can be overcome to build trust, other times they simply cannot. Health research projects can build on existing relationships and/or forge new ones. Some practical considerations for health research include exploring how these relationships are initiated, maintained and supported; what the nature of the relationship might be; and whether a power imbalance exists. Practical implications include how communication is achieved, i.e. through regular meetings and in-person discussions or teleconferences, if over a distance; how direction is chosen and agreements are made collaboratively; how accountability is ensured; and how the methodological approach and sharing of knowledge is agreed upon. Engagement of community members. From a relational perspective, participants are engaged, not recruited, to participate in a project. They are engaged through the formation of relationships. A snowball engagement method, for example, focuses on the establishment of trusting relationships. Individuals volunteer to participate in the study or recommend family members, friends or colleagues who they think will be willing to participate. The project is supported by community members, who then encourage others to engage in the study through casual conversations and ‘kitchen table talks’ (Price 2007). Participants should be considered as collaborators or co-researchers when the sharing of knowledge occurs mutually, for example, in photovoice research, story-telling or narrative research, or Inuit Qaujimajatuqangit (IQ or Inuit knowledge) studies. The project is supported and promoted by community members, which strengthens the response to the project, as well as contributes to greater rigour and accountability overall. Unikkaaqatiginniq Unikkaaqatigiinniq is the Inuit concept related to story-telling, the power of story and the role of stories in Inuit ways of being. Story-telling and the sharing of experiences. Kovach (2009) states that a defining characteristic of Indigenous methods is the inclusion of stories and narratives by both the researcher and research participant. In an Indigenous context, stories are methodologically congruent with tribal knowledges (Wilson 2008). The Inuit have a very strong oral history and oral culture. The telling of stories is a millennia-old tradition for the sharing of knowledge, values, morals, skills, histories, legends and artistry. It is a critical aspect of the Inuit ways of life and of knowing (Bennet & Rowley 2004), and allows respondents to share personal experiences without breaking cultural rules related to confidentiality, gossip or humility. Indigenous scholars, Kovach (2009) 7 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies and Wilson (2008), have underscored the importance of ‘story’ in a research setting. In a study of determinants of health for Inuit women in Nunavut, participants drew upon examples from the community and used stories to illustrate points about important health issues, such as teenage pregnancy and custom adoption. These stories illustrated aspects of the broader health context involving the community and society relating to education and cultural identity (Healey 2006b; Healey & Meadows 2008). Understanding this approach for sharing knowledge allows for greater insight into the data and greater understanding of the meaning of the stories. Although some knowledge or practices may be disappearing, the use of stories to effectively communicate information remains part of Inuit life. It is for this reason that the recognition of the power of story is particularly important in the context of Inuit communities. In relational epistemology, stories are shared, not collected. Interviews are conversations conducted in a natural, comfortable setting. In our work, we share a tea or coffee over a conversation. Parents may (and often do) bring their children with them. Over the course of the conversation, knowledge and experiences are shared in a common space. For example, in a study exploring the perspectives of parents on discussing a particular health topic with their teenaged children, I (Healey) shared personal experiences about my own family and raising my children, discussed resources related to the health topic, such as local people who can provide support, and the resources available to parents to facilitate conversations with their teenaged children about a health topic. This was part of the conversation and relationship-building process, and enhanced both my own experience and that of participants/collaborators while enriching the dialogue on the particular health topic being discussed. The researcher’s willingness to listen, quietly and carefully, without interrupting the story-teller, is vital; listening is in itself a critical skill that many researchers need to develop and practice. Reflection on how stories are presented. Ideally, stories are presented in their entirety. The presentation of the entire story allows the reader or listener to derive the messages that are relevant to that individual. Kovach (2009) shares her experience struggling with the presentation of findings in an Indigenous research perspective. She discusses her need to present the findings in two different ways: 1. one in which she associates most closely with the Indigenous methods perspective and includes the presentation of the entire story exchanged between the researcher and the research participant; and 2. a coding and thematic bundling of ideas with which she associates a more Western style of data presentation. In the latter case, she shares her need to present the data this way to make it accessible to the academy, but feels that this contravenes with the intent of her work (and the intent of her ancestors) (Kovach 2009: 53) by extracting experiences from the contexts of their stories. Balancing the need to articulate a point in a small allotment of text space (in the case of a journal article or presentation) and the need to be respectful of the story in its entirety, is difficult to negotiate. It is our perspective that acknowledging this challenge in the presentation of findings is part of honouring the sections of the story that are omitted for the sake of time or space. 8 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies Reflections on our own interviewing experience. Stories can be shared and told by an individual or they can be created over the course of conversation by a group of people. A dialogue about a topic is shaped by collective story-telling. When interviewing, I (Healey) am often engaged in a dialogue with the person or people with whom I am speaking. Since I am usually making contributions to the conversation, an important step in the exploration of the dialogue is to reflect upon my own story and experiences in relation to the topic(s) discussed. Articulating how my story and experiences may have shaped or in some way contributed to the conversation, allows me to tease out the experiences that are unique to the people who shared them. Iqqaumaqatigiinniq Iqqaumaqatigiinniq is the Inuit concept of all thoughts, or all knowing, coming into one. It is often referred to as part of the holistic Indigenous worldview. Finding meaning and understanding. The goal of data analysis is to find meaning and understanding in the stories, to return to the research question and to examine the data in the context that was set at the beginning of the study. In order to accomplish this, often a multi-stage process is needed, such as those described by Creswell (Creswell 2003). Thinking about and analysing dialogue at the time of the conversation with a participant or collaborator is part of the process, therefore, some meaning-making occurs immediately in the moment of the conversation. After transcription, transcripts are read and re-read several times and reflected upon. The recordings of interviews or conversations are listened to and transcripts are re-read to ensure that transcription is verbatim and to fill in any missing words. After a period of time immersed in the words and stories, ideas may start to form or crystalize (Borkan 1999; Healey & Meadows 2008). Discussing these ideas with others, colleagues, collaborators, or participants, is a critical part of the analysis at this phase, from a relational perspective (Kovach 2009; Wilson 2008). How are these ideas coming together? What do they offer to the Inuit community? What do they offer to the community of colleagues, collaborators, partners and participants? Placing the ideas in the context of the literature, the experiences of others and the experiences of the community is part of finding meaning and understanding. Pittiarniq Pittiarniq is the Inuit concept of ‘being good’, which can mean being 'good' in a philosophical and moral sense, and also in terms of action ‘good behaviour’ (for example, in the behaviour of children). The historical context of health research in Nunavut is complex. Different communities have had varying experiences with researchers coming to the north from the south. For decades, researchers have come and gone from Nunavut to conduct their research and then leave. Some had good intentions, some were ignorant of their intentions. Some developed relationships with Inuit, others conducted experiments on Inuit (Emberley 2008; Wachowich, Awa, Katsak & Katsak 1999). That experience is not unique to Inuit, which is why significant efforts have been made in Canada and in other parts of the world to define how research is carried out with Indigenous peoples, and how to create an ethical space in this context. A number of documents have been developed to guide researchers in their work with Indigenous peoples in Canada, including the Tri-Council Policy Statement, with special reference to Aboriginal Canadians, and the previously used document from the Canadian Institutes for Health 9 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies Research, Ethical Guidelines for Research with Aboriginal Peoples (CIHR 2006; CIHR, NSERC & SSHRC 2010). In the Western research model, ethics are grounded in the philosophical ideas of right and wrong, good and evil. Research ethics have their root in the post-World War II, Nuremburg trials, where medical researchers were held accountable for the medical experiments that they conducted on prisoners of war. Research ethics have been reactive; created in response to those who have used their power over others to do harm primarily in the context of medical experiments conducted during World War II (WMA 1964). Five of the enduring principles of research ethics are beneficence, non-maleficence, truth/justice, dignity and autonomy. Since that time, ethical frameworks have been developed to further identify particular sub-categories of ethical behaviour from the perspective of different populations, for example, vulnerable populations, Indigenous populations, women, and children. In 2006, we began a project to explore how ‘ethics’ had been typically conveyed in Inuktitut in previous research studies. At the same time, we wanted to learn from Nunavut community members what they perceived to be ethical conduct in research. In discussions with different community members from across Nunavut, there have been three Inuktitut terms that have been highlighted. The first, shared by McGrath (2004), is Pittiaq-, which is related to ‘being good, kind or well; doing good or rightly’. McGrath (2004) argues that the term Pittiaq- refers to both technical and moral excellence. Without knowledge or experience of Inuit societal values, researchers from outside of the culture and epistemology often interpret doing/being good (ethics) based on their own worldviews and assumptions about what ‘good’ is. While well-intended, those decisions can have a range of negative impacts on their particular research participants or even on Inuit society in general (Janet Tamalik McGrath 2004). The second term, shared by another community member who declined to be named, is inuuqatigiittiarniq, which, as mentioned earlier, is related to the concept of being respectful of others. Thirdly, pittiajusuringgirniq uulijalimanik is the remaining Inuktitut term shared by Shirley Tagalik of Arviat, NU (Tagalik 2013). Inherent in this term is the belief that there is a power greater than oneself that operates in the world. It was regarded as folly to try to set oneself up above others or in dominance of the natural world or environment. Being humble and respectful of the rights of all things helped Inuit to maintain a balance in their relationships (Tagalik 2013). All of the terms refer to behaviour; that one’s actions are reflective of one’s intention to ‘do good’. In doing so, one will be respectful of other people, the land, and the relationships between and among the facets of the research. Above all, participant-collaborators must be treated with respect, appreciation and dignity. Consent. In research, consent is typically sought in writing. Newer and more responsive means of ensuring that a participant-collaborator is informed include the use of video to demonstrate procedures or sample collection, or capturing the verbal explanation of the project and consent on audio recorder. The language in which the project is explained is very important. Consent information should be presented in English, Inuktitut and/or Inuinnaqtun depending on the language preference of the participant or collaborator. The protection of the stories. The sensitive and private nature of the experiences shared in health research studies underscores the fact that the protection of these stories is of critical importance. Considerations for protecting the story include: presenting the story in a way that honours the story-teller; articulating the intention of the story- 10 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies teller when they shared the story; articulating the context in which it was shared; respecting whether or not they want it shared with others and, if so, in what context; whether the story-teller wants to be identified with their story or whether they want their identity kept confidential; and reflecting on how might the story be (mis)used in the future. Accountability. From a relational perspective, accountability is part of the process of developing or building on relationships with each participant. The relationship is what holds us accountable. Kovach (2009) shares that, for Indigenous researchers, there are often three audiences with whom we engage for transferring the knowledge of our research: 1. Findings from Indigenous research must make sense to the general Indigenous community. 2. Schema for arriving at our findings must be clearly articulated to the non-indigenous academy. 3. Both the means for arriving at the findings, and the findings themselves, must resonate with other Indigenous researchers, who are in the best position to evaluate the research. Researcher responsiveness and openness (Morse, Barrett, Mayan, Olson & Spiers 2002), methodological coherence (Eakin 2003; Morse et al 2002; Morse, Swanson & Kuzel 2001), and reflection upon intentions and relationships (Gearheard & Shirley 2007; ITK & NRI 2007; Meadows, Verdi & Crabtree 2003; Morse et al 2002) are all aspects of accountability in relational research. The Piliriqatigiinniq Model for Community Health Research. Piliriqatigiinniq is the concept for working in a collaborative way for the common good. The Qaujigiartiit3 Health Research Centre has developed a model for how research should be conducted, both within the centre and by the researchers with whom the centre engages. Qaujigiartiit developed the Piliriqatigiinniq Partnership Model for Community Health Research in the formative years of the centre (Healey 2008). This model was developed in response to the community-identified need for health research that explores topics of concern to Nunavummiut and is collected, analysed and disseminated in a holistic and collaborative way. The Piliriqatigiinniq model is a visual representation of the web of relationships that we have with each other and is built upon the principle that anyone can be involved in health research in some capacity if we are all working for the common good. Multi-disciplinary collaboration strengthens research projects, enriches data analysis with additional perspectives, and fosters a greater sharing of knowledge and implementation of findings across sectors. While there may not be a representative from every sector involved in every project, the model serves as a reminder to look beyond the scope of what is commonly defined as ‘health’ and ‘research’ to include knowledge-holders and stakeholders from other disciplines and walks of life. This model was developed to provide practical organizational and methodological guidance, however, the foundations run much deeper. 3 ‘Qaujigiartiit’ is the Inuktitut word for ‘looking for knowledge’. 11 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies Figure 1 The Piliriqatigiinniq Partnership Model for Community Health Research The model originated from a dialogue about health and the history of health research in Nunavut communities. It was derived from the stories and voices of people across Nunavut who attended community engagement sessions held between 2006 and 2008 (Healey 2006a, 2006c, 2007, 2008). While the model originated from a health perspective, the underlying principle is cross-cutting and interdisciplinary. The model is structured on the relational aspects of life in Nunavut communities—the relationships that are shared are the foundation from which we move forward to achieve wellness. Those relationships can be with anyone from any walk of life and with anything from any environment. The knowledge that is shared and created in this space is helpful for everyone. The motivations with which one engages in the project are the same—coming together for the common good and the betterment of health and wellness. The group is accountable to each other, to the relationships they have formed and/or will form together, and the relationships they have with others in their community. In essence, this is a model for an Inuit epistemology in action because it is arises from the relational perspective and is built on what was known, what is known, and what will come to be known in Inuit communities. Its development is predicated on the past, present and future experiences of Nunavummiut4 . 4 ‘Nunavummiut’ is the Inuktitut word for ‘People of Nunavut’. 12 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies From this epistemological perspective, ethics, accountability, methodology, knowledge, understanding and our relationships with each other as human beings, as well as our environments are part of the same space. This is, in our opinion, the essence of an Inuit epistemological perspective. The Qaujigiartiit Health Research Centre promotes the idea that research must be used as a tool for action—that when one understands the scope and breadth of the issue, one is better-equipped to move forward and take action on it. Multi-sectoral collaboration strengthens research projects, contributes added perspective to data analysis and contributes to greater dissemination and implementation of findings across sectors. Therefore, this approach can be considered to be one that promotes active engagement, the sharing of knowledge, advocacy and action. It is particularly important in Inuit communities that research projects be collaborative and inclusive. The historical context of research in the north, including harmful and unethical research practices, have led to an environment of mistrust and displeasure with researchers in many communities (Healey 2006a, 2006c, 2007, 2008). When we lead our own research projects, we are able to focus on answering our own questions and incorporate methods that are reflective of what we know about wellness and how we know it. This view underscores the right of colonized, Indigenous peoples to construct knowledge in accordance with the self-determined definitions of what they want to know and how they want to know it. Conclusion It is our belief that health research should answer the questions of the people and that such research should be collaborative. We also recognize that not all projects can incorporate the methods outlined in this paper and variations exist depending on the approach incorporated in any given project. With this paper, it has been our intention to share epistemological considerations for northern community health researchers. This paper is a beginning of a dialogue and we look forward to engagement with the expansion of this literature in the future. References Association of Canadian Universities for Northern Studies (ACUNS). 2003. Ethical Principles for Conduct of Research in the North. Ottawa, ON: Association of Canadian Universities for Northern Studies. Alfred, T and J Corntassel. 2005. "Being Indigenous: Resurgences against Contemporary Colonialism." Government and Opposition 597-614. Barnhardt, R & AO Kawagley. 2005. "Indigenous Knowledge Systems and Alaska Native Ways of Knowing." Anthropology and Education Quarterly 36(1): 8-23. Battiste, M. 2002. Indigenous knowledge and Pedagogy in First Nations Education: A literature review with recommendations. Ottawa, Canada: Government of Canada, Department of Indian and Northern Affairs (INAC). Battiste, M & JY Henderson. 2000. Protecting Indigenous Knowledge and Heritage: A Global Challenge. Saskatoon, SK: Purich Press Publishing. Bennet, J & S Rowley. eds. 2004. "Introduction." In Uqalurait: An Oral History of Nunavut. Montreal, PQ: McGill Queen's University Press. 13 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies Borkan, J. 1999. "Immersion/Crystallization." In Doing Qualitative Research, edited by B Crabtree & W Miller. 2nd Edn. 179-194. Thousand Oaks, CA: Sage Publications. Chilisa, B. ed. 2012. "Postcolonial Indigenous Research Paradigms." In Indigenous Research Methodologies 98-12. Thousand Oaks, CA: Sage Publications. Canadian Institutes of Health Research (CIHR). 2006. Ethical Guildelines for Health Research with Aboriginal Peoples. Ottawa, Canada: Canadian Institutes of Health Research. Canadian Institutes of Health Research (CIHR), Natural Sciences and Engineering Research Council of Canada (NSERC) & Social Sciences and Humanities Research Council of Canada (SSHRC). 2010. Tri�Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa, Canada: Government of Canada. Creswell, JW. 2003. Research Design: Quantitative, Qualitative, and Mixed Methods Approaches. Thousand Oaks, CA: Sage Publications. Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects (1964). Deloria, V. 1995. Red Earth, White Lies: Native Americans and the myth of scientific fact. NewYork, NY: Scribner. Eakin, JM and E Mykhalovsky. 2003. "Reframing the evaluation of qualitative health research: Reflections on a review of appraisal guidelines in health sciences." Journal of Evaluation in Clinical Practice 9(2): 187-194. Egan, C. 1998. "Points of view: Inuit women's perceptions of pollution." International Journal of Circumpolar Health 57: 550-554. Emberley, J. 2008. "Skin: An Assemblage on the Wounds of Knowledge, the Scars of Truth, and the Limits of Power." ESC: English Studies in Canada 34(1): 1-9. Gearheard, S & J Shirley. 2007. "Challenges in Community-Research Relationships: Learning from natural science in Nunavut." Arctic 60(1): 62-74. Getty, GA. 2010. "The journey between Western and Indigenous research paradigms." Journal of Transcultural Nursing 21(1): 35-39. Grenier, L. 1998. Working with indigenous knowledge: A guide for researchers. Ottawa, ON: International Development Research Centre. Healey, GK. 2006a. An Exploration of Determinants of Health for Inuit Women in Nunavut. Scientific masters thesis, University of Calgary. Healey, GK. 2006b. Community-identified Health Priorities for Nunavut. Iqaluit, NU: Qaujigiartiit/Arctic Health Research Network – Nunavut. Healey, GK. 2006c. Report on Health Research Ethics Workshop and Community Consultation in Iqaluit, Nunavut. Iqaluit, NU: Qaujigiartiit/Arctic Health Research Network - Nunavut. Healey, GK. 2007. Report on Health Research Ethics Workshop and Community Consultation in Rankin Inlet, Nunavut. Iqaluit, NU: Qaujigiartiit/Arctic Health Research Network - Nunavut. Healey, GK. 2008. Piliriqatigiinniq Partnership Model for Community Health Research. Iqaluit, NU: Qaujigiartiit Health Research Centre. Healey, GK & LM Meadows. 2008. "Tradition and Culture: An Important Determinant of Inuit Women’s Health." Journal of Aboriginal Health 4(1): 25-33. 14 ISSN: ISSN 1837-0144 © International Journal of Critical Indigenous Studies Inuit Tapiriit Kanatami (ITK) & Nunavut Research Institute (NRI). 2007. Negotiating Research Relationships with Inuit Communities: A guide for researchers, edited by S Nickels, J Shirley & G Laidler. Ottawa, ON and Iqaluit, NU: Inuit Tapiriit Kanatami and Nunavut Research Institute. Karetak, J. 2013. Conversations of Inuit elders in relation to the Maligait (Inuit laws). Transcripts of conversations with Inuit elders. Nunavut Dept. of Education. Curriculum Support Services. Kovach, M. 2009. Indigenous Methodologies: Characteristics, conversations, and contexts. Toronto, ON: University of Toronto Press. Kovach, M. 2010. "Conversational Method in Indigenous Research." First Peoples Child and Family Review 5(1): 40-48. McGrath, JT. 2011. Isumaksaqsiurutigijakka: Conversations with Aupilaarjuk Towards a Theory of Inuktitut Knowledge Renewal. PhD dissertation, Carleton University, Ottawa. McGrath, Janet Tamalik. 2004. Translating ethics across the cultural divide in Arctic research: Pittiarniq. Meadows, LM, AJ Verdi & B Crabtree. 2003. "Keeping up appearances: using qualitative research to enhance knowledge of dental practice." Journal of Dental Education 67(9): 981-990. Morse, JM, M Barrett, M Mayan, K Olson & J Spiers. 2002. "Verification Strategies for Establishing Reliability and Validity in Qualitative Research." International Journal of Qualitative Methods 1(2): 13-22. Morse, JM, J Swanson & AJ Kuzel. 2001. The Nature of Qualitative Evidence. Thousand Oaks, CA: SAGE Publications. Price, J. 2007. Tukisivallialiqtakka Things I have now begun to understand: Inuit governance, Nunavut and hte Kitchen Consultation Model. Arts masters thesis, University of Victoria. Qikiqtani Inuit Association (QIA). 2012. Qikiqtani Truth Commission Final Report: Achieving Saimaqatigiingniq. Tagalik, S. Personal discussion about ethics, inuuqatigiitsiarniq and pittiajusuringgirniq uulijalimanik, July 16 2013. Thayer-Bacon, B. 2003. Relational Epistemologies. New York, NY: Peter Lang. Wachowich, N, AA Awa, RK Katsak & SP Katsak. 1999. Saqiyuq: Three Stories of the Lives of Inuit Women. Montreal, PQ: McGill-Queen's University Press. Wilson, S. 2008. Research is Ceremony: Indigenous Research Methods. Blackpoint, Nova Scotia: Fernwood Publishing.other
Backcountry travel emergencies in northern Canada: A case series of media-reported eventsStephanie Young, Taha Tabish, Nathaniel Pollock, Katie O’Beirne, Kue Young

A poster of backcountry travel emergency …

Englishᐃᓄᒃᑎᑐᑦ29% 20% 51% 40% 24% 36% Figure 5: Environment of incident 0% 5% 10% 15% 20% 25% 30% 35% % of all territorial events Figure 6: Primary cause of incident 0% 10% 20% 30% 40% 50% 60% Harvesting Travel Recreation Tourism Other or Not Reported % of all events by territory Figure 4: Reason for being in the backcountry 0% 10% 20% 30% 40% 50% Proportion of regional total Figure 3: Monthly incident distribution by region 0 5 10 15 20 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 # of event Figure 2: Annual number of events Backcountry travel emergencies in northern Canada: A case series of media-reported events Rural and Indigenous populations in northern Canada regularly travel in backcountry areas where they have limited access to telecommunication and emergency services. For many communities, travel is necessary for hunting, employment, cultural practices, and recreation, and often involves transport by snowmobile, boat, or on foot.1,2 Due to the nature of northern environments, travel in remote areas can pose risks for injuries and death.3,4 This may contribute to the elevated rates of injury morbidity and mortality in the Arctic.5 This research was conducted by the Circumpolar Health Systems Innovations Team and was supported by the Canadian Institutes of Health Research [Grant number TT6-128271]. Yellowknife (41%) Iqaluit (13%) Inuvik (12%) Baker Lake (11%) Figure 1: Travel party community of origin (% of total events in territory) Stephanie Young 1 , Taha Tabish 2, Nathaniel Pollock 1,3 , Katie O’Beirne 1, and Kue Young 4 1 Institute for Circumpolar Health Research, Yellowknife NT; 2 Qaujigiartiit Health Research Centre, Iqaluit, NU; 3 Labrador Institute, Memorial University, Happy Valley Goose Bay, NL; 4 University of Alberta, Edmonton, AB Discussion Background Results Results Objectives Each year, northern media outlets commonly report on incidents related to ‘on the land’ activities that result in missing persons or deaths. These reports may be complimentary data sources to official data from Search and Rescue organizations, RCMP, or health-related sources. In this study, we aimed to describe the extent and characteristics of media-reported backcountry travel emergencies. Questions In this study, we sought to answer the following questions: ① How many backcountry emergency events in the Northwest Territories and Nunavut did news media outlets report from 2004 to 2013? ② What were the most common environmental conditions, methods of transportation, and primary causes of backcountry emergency events? ③ What were the common outcomes reported? We used a case series design to examine backcountry travel emergencies in the Northwest Territories (NWT) and Nunavut (NU), Canada between January 1, 2004 and December 31, 2013. We identified cases by conducting an online search for news stories from two media outlets, Northern News Services and Nunatsiaq News. We defined cases as a media-reported event related to travel outside of communities that resulted in an emergency such as a mechanical problem, missing person, or death. We identified events using the terms “rescue”, “missing”, and “search.” We developed a standardized data collection form to ensure consistency between reviewers. We extracted data from the eligible articles, and used descriptive statistics to examine demographic, environmental, and health-related trends. We used Microsoft Excel to analyze the data. Methods One limitation in our study was that it is likely we do not have a complete capture of all backcountry travel emergencies, and death�related incidents may be overrepresented. The media may underreport events because of limited coverage for the most remote or small communities. Also, emergencies that do not require search and rescue support, or those in which individuals do not seek medical attention may not be officially reported. For the events we did identify, several news articles were missing demographic or descriptive information. Conclusion Limitations We showed that backcountry travel emergencies are frequent in northern Canada, are most common among adult men, and are highly fatal. We observed regional differences between the NWT and Nunavut with regards to the reasons for being on the land and the primary cause of the emergency. In both regions, the majority of events occurred on land or water, rather than ice. We identified 55 backcountry travel emergencies in Nunavut and 66 in the Northwest Territories from 2004 to 2013 (table 1). Travellers originated in the larger communities in both regions (Yellowknife, Inuvik, Iqaluit) in the majority of the events (figure 1). Both regions experienced substantial variation in the number of annual events (figure 2). Events occurred most often in July/ August in the NWT and in November/December in NU (figure 3). Table 1: Demographics Nunavut NWT Number of events 55 66 Sex* (% male) 86% 78% Mean** Age (Range) 36.6 (<1-81) 34 (4-92) Mean # in party (Range) 2.9 (1-30) 2.7 (1-34) *Based on 46 events in NU and 59 in NWT **Based on 33 events in NU and 29 in NWT References 1 Laidler GJ, Ford JD, Gough WA, et al. Travelling and hunting in a changing Arctic: assessing Inuit vulnerability to sea ice change in Igloolik, Nunavut. Climatic Change 2009; 94(3-4): 363-97. 2 Willox AC, Harper SL, Edge VL, Landman K, Houle K, Ford JD. The land enriches the soul: On climatic and environmental change, affect, and emotional health and well-being in Rigolet, Nunatsiavut, Canada. Emotion, Space and Society 2013; 6: 14-24. 3 Durkalec A, Furgal C, Skinner MW, Sheldon T. Investigating environmental determinants of injury and trauma in the Canadian North. International Journal of Environmental Research and Public Health 2014; 11(2): 1536-48. 4 Snyder CW, Muensterer OJ, Sacco F, Safford SD. Paediatric trauma on the Last Frontier: an 11-year review of injury mechanisms, high-risk injury patterns and outcomes in Alaskan children. International journal of circumpolar health 2014; 73. 5 Do MT, Fréchette M, McFaull S, Denning B, Ruta M, Thompson W. Injuries in the North–analysis of 20 years of surveillance data collected by the Canadian Hospitals Injury Reporting and Prevention Program. International Journal of Circumpolar Health 2013; 72. Author Contact Taha Tabish @taabai (twitter) taha.tabish@qhrc.ca Nathaniel Pollock @njpollock (twitter) nathaniel.pollock@med.mun.ca Want a copy of our poster? Scan here: Nunavut Northwest Territories Hunting/harvesting and transportation were the most common reasons for being on the land (figure 4). In NWT, the majority of incidents occurred on the water, and in boats (35%), while in Nunavut, the majority occurred on land (figure 5). Environmental causes related to ice and water conditions were the most frequent contributing factor for events in the NWT. These included falling through the ice, ice jams, fast currents, hitting a sandbar, boat capsizing, and falling into the water. In Nunavut, weather conditions were the most frequent primary cause of emergencies; this included high winds, low visibility, and blizzards (figure 6). Nunavut NWT We observed differences between Nunavut and the Northwest Territories with regard to the reason for being on the land, environment of incident, and reported cause. We found that the news-media is a feasible data source, though it likely over-reports extreme cases. For surveillance purposes, it may be useful to compare media reports with official government and community data sources. Qaujigiartiit Health Research Centre @Qaujigiartiit www.qhrc.ca Institute for Circumpolar Health Research @ichrca www.ichr.ca Water Ice Landother
Inuit parent perspectives on sexual health communication with adolescent children in Nunavut: ‘‘It’s kinda hard for me to try to find the words’’Gwen Healey

The purpose of this study was to explore Inuit parent perspectives on sharing knowledge with teenage children about sexual health and …

EnglishᐃᓄᒃᑎᑐᑦORIGINAL RESEARCH ARTICLE Inuit parent perspectives on sexual health communication with adolescent children in Nunavut: ‘‘It’s kinda hard for me to try to find the words’’ Gwen Healey* Qaujigiartiit Health Research Centre, Iqaluit, Nunavut, Canada Background. For Inuit, the family unit has always played a central role in life and in survival. Social changes in Inuit communities have resulted in significant transformations to economic, political and cultural aspects of Inuit society. Where the family unit was once the setting for dialogue on family relations and sexuality, this has largely been replaced by teachings from the medical community and/or the school system. Objective. The purpose of this study was to explore Inuit parent perspectives on sharing knowledge with teenage children about sexual health and relationships. Method. A qualitative Indigenous knowledge approach was used for this study with a focus on Inuit ways of knowing as described in the Piliriqattigiinniq Community Health Research Partnership Model. Interviews were conducted with 20 individual parents in 3 Nunavut communities in 2011. Parents were asked about whether and how they talk to their children about sexual health and relationships. An analytical approach building on the concept of Iqqaumaqatigiiniq (‘‘all knowing coming into one’’), which is similar to ‘‘immersion and crystallization,’’ was used to identify story elements, groupings or themes in the data. The stories shared by parents are honoured, keeping their words intact as often as possible in the presentation of results. Results. Parents shared stories of themselves, family members and observations of the community. Fifteen of 17 mothers in the study reported having experienced sexual abuse as children or adolescents. Parents identified the challenges that they have and continue to experience as a result of forced settlement, family displacement and the transition of Inuit society. They expressed a desire to teach their children about sexual health and relationships and identified the need for emotional support to do this in the wake of the trauma they have experienced. Parents highly valued elders and the knowledge they have about family relationships and childrearing. Conclusion. There are powerful, unresolved healing issues in Inuit communities. The traumatic experiences of the settlement and residential school era continue to have an impact on present-day family relationships. To support parentchild dialogue on sexual health and relationships, parents identified a need to repair relationships between youth and elders, and to provide culturally sensitive support to parents to heal from trauma. Keywords: Inuit; sexual health; public health; adolescents Responsible Editor: Rhonda M. Johnson, University of Alaska Anchorage, Alaska, USA. *Correspondence to: Gwen Healey, PO Box 11372, Iqaluit, Nunavut, X0A 0H0, Canada, Email: gwen.healey@qhrc.ca Received: 30 May 2014; Revised: 22 September 2014; Accepted: 22 September 2014; Published: 21 October 2014 I n 2009, Nunavut reported high rates of chlamydia and gonorrhoea, both of which are sexually trans�mitted infections, (3,772/100,000 and 1,588/100,000, respectively), compared to Canadians (259/100,000 and 33/100,000, respectively) (1). Concerns about these high rates and the high rates of teen pregnancy in Nunavut (161.3/1,000 compared to 38.2/1,000 in the rest of Canada) prompted community members in Nunavut to ask questions about how parents and their children talk about sexual health (24). The family unit was once the setting for dialogue on family relations, reproductive health and sexuality, and this has largely been replaced by teachings from the medical community and/or the school system. The purpose of this study was to explore Inuit pa�rent perspectives on sharing knowledge with adolescent children about sexual health and partner relationships. Family is the primary context in which a child grows, develops an identity, is socialized, is hurt and healed, and International Journal of Circumpolar Health 2014. # 2014 Gwen Healey. This is an Open Access article distributed under the terms of the Creative Commons CC-BY 4.0 License (http://creativecommons.org/licenses/by/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for any purpose, even commercially, provided the original work is properly cited and states its license. 1 Citation: Int J Circumpolar Health 2014, 73: 25070 - http://dx.doi.org/10.3402/ijch.v73.25070 (page number not for citation purpose) navigates physical and social development (5). The family is a naturally occurring unit and the context in which most behaviour-shaping experiences can occur. In recent years, increased attention has been given to the role of the family in predicting and understanding the sexual behaviour of adolescents in the literature (69). Family factors, such as communication, availability of parents, spending time together outside the home and engaging in activities together can have an impact on the extent to which behaviour problems or choices endure and become part of a healthy or unhealthy lifestyle (5,7,10). For example, adolescents who reported positive relationships and shared activities with parents were less likely to initiate sex (7). Parental communication about sex and condom use has been shown to directly relate to adole�scent sexual behaviour (8). Whitaker and Miller (8) found that peer norms were more strongly related to sexual decision making among adolescents who had not dis�cussed sex or condoms with a parent. The authors suggest that results indicate that a lack of communication may cause adolescents to turn to peers and that peers may then influence their behaviour. Parental discussions have been associated with less risky sexual behaviour among adolescents, less conformity to peer norms and a greater belief that parents provide the most useful information about sex (6,8,11). Research has shown that adolescents are more likely to use birth control when there is parental support to do so (12). In addition, research has shown that some teens want to have discussions about sex with their parents and other caregivers, more so than others, to help them understand sexuality and to guide them in their own decision making (13). Parentteen discussions about sexual health topics are important because they (a) provide information to teens, (b) they reinforce parental values and (c) they buffer teens from peer pressure (8). Parental closeness and monitoring, rather than the actual specifics of parentchild communication, may also play a role because parents who talk to their children about sex or condoms may have already established closer relation�ships with their children (8,11). For Inuit, the family unit has always played a central role in life and in survival (14). Inuit kinship extends beyond familial affiliation to other non-biological affilia�tions including adoption, friendship, marriage or partner�ship, and namesake (1518). Every person had a specific and essential role to play in making contributions towards family survival and the education of young children and adolescents (16,19,20). Before contact, small groups of Inuit families travelled together to different camps and hunting grounds, in ilagiit nunagivaktangat. 1 Each person within a kinship group was valued for his or her contribution to the group’s well-being and success. A child’s earliest learning occurred as they observed and made meaning from the actions of their parents and extended family in the camp (22,23). Children learned valuable behaviours, such as self-restraint, patience, non�aggressiveness, generosity and responsibility, by watching their family members lead by example (16,24,25). When Inuit lived in family-based nomadic camps, teaching about sexual health and relationships was part of a dialogue between children and their parents or extended family, which occurred as part of the sharing of knowledge on a variety of topics. Painngut Peterloosie (26) highlighted the importance that was placed on the openness of the relationship dialogue between romantic partners in discussing, for example, menstruation, sex or sexual satisfaction. After the settlement era in the 1950s, during which time Inuit settled into communities, were sent to residential school and/or were sent away to Canadian cities for medical treatment, parentchild extended family interaction changed significantly because many families were separated and displaced (21,27,28). Today in Nunavut, as in many other jurisdictions, parents and family are no longer the sole source for information about sexual health knowledge and behaviours, if they are a source at all (24,2933). The school system, peers, television, Internet, media, community members, tea�chers and others now play a role in the transmission of attitudes, knowledge and beliefs about sexual health behaviours (29,33,34). In a study of the perspectives of 53 Inuit women on teen pregnancy, some respondents identified less parental control over young people and greater influence on behaviour from other individuals outside of the family as a worrisome trend in larger communities compared to pre-settlement times (29). In a review of determinants of sexual health among Inuit adolescents, Steenbeek, Tyndall (32) asserted that Inuit parents and grandparents did not feel competent to instruct their own children in sexual health. Trauma experienced during and after the settlement and settle�ment era in the Eastern Arctic (35,36); the loss of accumulated Inuit wisdom, knowledge, teachings and practices regarding life cycle, reproductive health and family planning that occurred as a result (21,30,32,37,38); and the changing nature of northern communities (28,29,39) could be factors contributing to the lack of confidence reported among parents. Methods This qualitative participatory research study explored the topic of Inuit family communication about sexual health and relationships at the request of community members who participated in consultations conducted in Nunavut between 2006 and 2008 (2,40). Their request was prompted by the high rates of sexually transmitted infections and high rate of teenage pregnancy in Nunavut communities 1 Inuktitut terminology meaning, ‘‘a place used regularly or seasonally by Inuit for hunting, harvesting and/or gathering’’ (21). Gwen Healey 2 (page number not for citation purpose) Citation: Int J Circumpolar Health 2014, 73: 25070 - http://dx.doi.org/10.3402/ijch.v73.25070 compared to the Canadian population. The research project was designed and implemented in partnership with community wellness or research centres in each of 3 Nunavut communities. The researcher is from Nunavut and familiar with community and territorial research protocols. This study followed a modified grounded theory approach (41), which retains most of the defined char�acteristics of ‘‘classic’’ grounded theory, but takes a more subjective and reflexive stance which is more aligned with Indigenous knowledge and ways of knowing (4244). The research framework focused on Inuit ways of knowing, specifically following the Piliriqatigiinniq Partnership Community Health Research Model (45). The model highlights 5 Inuit concepts, which informed the research approach: Piliriqatigiinniq (the concept of working to�gether for the common good); Pittiarniq (the concept of being good or kind); Inuuqatigiinniq (the concept of being respectful of others); Unikkaaqatigiinniq (the philosophy of story-telling and/or the power and meaning of story); and Iqqaumaqatigiinniq (the concept that ideas or thoughts may come into ‘‘one’’). A paper outlining the theoretical and methodological aspects of this study in greater detail is published elsewhere (45). Participants were engaged in the study through community health and wellness centres and were offered the opportunity to be project partners if they so desired. Inuit parents who had at least 1 teenage son or daughter between the age of 13 and 19 years were invited to participate. Interviews were conducted in a comfortable setting chosen by the partici�pant, recorded with permission and transcribed verbatim. All questions were asked in English, and participants primarily responded in English. In the cases where they responded in Inuktitut, the author provided the transla�tion and verified the translation with a third party. Participants were asked open-ended questions about their experiences talking about sexual health and relationships with their children and invited to tell stories and share experiences. Data were analysed through a process of ‘‘immersion and crystallization’’ (46) which, from the perspective of the researcher, is a process that is analogous to the Inuit concept of Iqqaumaqatigiiniq, ‘‘all knowing coming into one.’’ Through a process of listening to interviews, reading and re-reading transcripts and stories, themes crystalized in the data. A rigorous, respectful and mindful process was followed for the data analysis, which included: the comparison of findings to the known literature on the topic (47); reflexivity and bracketing of researcher perspectives before and during the study (48,49); an iterative data collection and analysis process (50); discussion of findings with the local Nunavut-based advisors which included representatives from 2 community wellness centres,2 the Chief Medical Officer of Health for Nunavut, a Community Health Representative (CHR) and a public health nurse (50); reviewing the findings with participants or collaborators when and where appropriate (51); and honouring the stories, shared by parents, by keeping their words intact as often as possible in the presentation of results without breaching confidentiality (42,45). Results Twenty interviews were conducted in 3 Nunavut commu�nities. The population of the communities ranged from 1,200 to 7,000. The respondents were aged between 30 and 58. Of the Inuit parents who volunteered to be interviewed for this study, 3 were fathers and 17 were mothers; 19 of 20 did not complete high school; 11 were employed in part�time, seasonal or casual work, 3 were unemployed and 6 were employed full-time. When asked about whether they spoke to their children about ‘‘sexual health,’’ parents described sexual health at the individual level as well as in the larger community and historic context. In response to the question about where they learned about sexual health, most mothers in the study disclosed being sexually abused as a child or adolescent. They stated that their experiences of child sexual abuse made them feel inadequate to talk to their children about sexual health. Both mothers and fathers shared a desire to teach their children about sexual health and relationships, and identified a need for support to help them do this, possibly by including elders. There were 2 primary themes in the data: (a) Parentadolescent communication: ‘‘It’s kinda hard for me to find the words’’ and (b) Bringing elders and young people together to talk about sexual health. Themes and quotes are presented in English, as that is the language in which the stories were conveyed, mirroring the way in which parents shared experiences. Parentadolescent communication: ‘‘It’s kinda hard for me to find the words’’ Parents most often spoke of parentadolesent commu�nication in terms of what they perceived to be a struggle ‘‘between worlds’’ and how this struggle impacted rela�tionships with their children. Parents in this study were among the first generation of Inuit born into permanent settlements. Their parents were often born and raised on the land in nomadic Inuit camps. The children of that era are the parents of today’s youth generation. Participants spoke of the struggles families experienced adjusting to this ‘‘different world,’’ meaning the world of permanent settlements and the expectations of non-Inuit institutions, such as schools, nursing stations or the police force, in these new communities. When asked to explain the perceived divide between the parent and adolescent generations and impact on communication about sexual health, one father said, When the kids are not listening to parents today maybe [it’s] because the mother or the father is 2 The Arviat Community Wellness Centre and the 2nd declined to be named. Sexual health communication with adolescent children in Nunavut Citation: Int J Circumpolar Health 2014, 73: 25070 - http://dx.doi.org/10.3402/ijch.v73.25070 3 (page number not for citation purpose) yelling to them. The child [becomes] too hard and it seems like they don’t want to listen to the parents anymore. Because they yell ... yeah, they yell too much. That they become hard. Hard and they will forget in their mind their childhood when they’re older. So, some parents yell too much to the kids. Some parents are quiet. Some parents are keeping it [inside]. Different world now, different families. We all have different problems. Some people are [in a] very happy family. Some people are in not very good families. Some people are [in] very scary families. Some people are really not good not welcoming people [in their] families. Like we’re all different. Father Many of the parents in this study reported experiencing trauma, poverty and/or hardship in their childhood during this period of transition. Violence, substance use and/or mental illness are part of the pattern of ill-health in today’s communities resulting from a lack of support to cope with those experiences. Parents described violence, substance use and unresolved trauma as factors that have perpetuated fractures in family relationships and in parentadolescent communication about sexual health. Parents in this study expressed a very strong desire to talk to their children about sexual health and relation�ships but questioned their confidence to teach their children. Fifteen of 17 mothers in the study disclosed experiences of sexual abuse in childhood or adolescence, and often described sexual health in terms of protecting their children from sexual abuse. Parents shared the stories to provide a context for explaining their desire to talk to their children about their negative or traumatic childhood and adolescent experiences in order to prevent their children from being similarly harmed. However, parents feared that they would be judged by their children for having engaged in the same behaviours that they are trying to prevent. I’ve been on and off with a relationship with [my children’s] father. And when we have our ups and downs when he comes and goes like takes off and then my daughter knows that she knows I’m down and then I start telling her I said when you’re a teenager, don’t ever get a boyfriend. I said don’t ever get a boyfriend from here. Like you’ve got to find the right one and that’s not abusive and like won’t cheat on you and won’t play games. So it’s kinda hard for me to tell her more like, but I don’t know how to explain it to her. So, I always try before I say anything I sit down and I think about think about how how how am I going to say it to her. So, it’s kinda hard for me to try to find the words. Yeah. And a way to say it to her. Um, the way I see it these young kids, now they’re all shacked up and ... at a young age. Like some of them are what? Thirteen fourteen? And I’ll say to myself, I could see myself when I was that young and like it’s scary to get shacked up at a really young age and it’s .... Because they’re having kids. Are they just shacking up because they want to or ... because I wonder do they know about sexuality and life [relationships]? Do they know like once you’re with the one once you’re with one girl or one boy you are just supposed to be together. Not to just do a couple of one night stands and then take off and then go to another girl .... That’s the part that really scares me cause it’s like they’re getting that STI all the time and I know how it feels cause you have to take pills for that and then once you get treated and the next thing it happens it goes back again. Same. Just like that circle of violence. It’s like that. The same rotation over and over again. And they say they won’t hurt you again. But the next thing it happens again. Parents identified a need for greater emotional support to discuss sexual health and relationships with their chil�dren. Parents indicated that they struggled with how to talk to their children about sexual health because of traumatic experiences in their own youth. They identified a need for support for themselves and for each other in order to foster wellness in their own lives and in the lives of their children. Definitely parents could be more involved [in talking to their children about sexual health and relationships] because it will not only help [us], but kids to be more aware of their surroundings. And what sexual preference they have and for them to respect themselves. And others, I think it would make a big difference if parents start talking to they could do more talking to their children and not be shy about it. Because every parent has a role and to have brighter, healthier future they should talk to their kids. Bringing elders and young people together to discuss sexual health In the context of parentadolescent communication about sexual health, some parents talked about personal relationships among their parents’ generation those who are now elders in the community. They spoke fondly of the older generation and provided stories and exam�ples about the practices in which their parents had participated that are no longer followed today, such as arranged marriage. One participant indicated that the shift from the arranged unions of her parents’ generation to the self-selected partners of her teen daughter’s generation was new for the family and something for which she was preparing. It’s changed a lot from [my parents] generation. Two parents if there was a teenager, and the teenager was a boy and a girl ... they would be set up their relationship would be arranged. Once they reached puberty or once they get older, they would be living together. Then, even at the last minute when they’re ready to be together, there would be a marriage set up Gwen Healey 4 (page number not for citation purpose) Citation: Int J Circumpolar Health 2014, 73: 25070 - http://dx.doi.org/10.3402/ijch.v73.25070 right away, early in the morning around 7 am right out on the land. And they would get married. Just like that. Not living with parents anymore, you just have to be with him. That’s how some of them were. Our parents [generation]. That’s how they used to be. So, I just really prepare for it like as our ancestors used to do prepare and all that. Looks like our teenagers are deciding who they want to marry. Who they want to be with. I just know my parents got married one day when they were 20 years old. mother These stories were shared to illustrate the rapid change in the formation of partner relationships within 3 genera�tions in their communities. Participants talked about value they placed on the knowledge of elders about relationships and/or sexual health, and expressed a desire to see it revived and promoted among young people in the community. Parents indicated that while some adole�scents may prefer to speak to elders or grandparents instead of their own parents, other young people may not yet be willing to listen to elders at all. In the latter situation, parents identified that the relationship between youth and elders needed to be restored. The parents felt that elders and youth were important supports for each other, and sometimes can communicate in a way that parents and youth cannot: [Elders/grandparents] are not even trying [to talk to kids] anymore because ... they won’t listen. They’re already listening to the music and the television and the Internet. And they don’t want to listen to their elders. They know this. That’s why [the older generation] shut their mouths. So, I guess what we need to develop is elders and young people together. Within the building, out there *gestures out the window*. And in the schools. Everywhere. On the land. When their friends are bothering them ... or this young man or young lady wants to go out with one of my children ... they don’t tell me; they don’t tell my wife. They always tell my mother (an elder). They talk to her. They are more open to them, than us as a parent. Discussion The stories shared in this study illustrated, first, how parents related their trauma history to their understand�ing of parentadolescent communication in today’s com�munities in Nunavut. Parents described their childhood living in a ‘‘different world,’’ one in which families were separated and relationships were disrupted. They felt they did not have the confidence or ‘‘the words’’ to communicate with their children about sexual health and relationships as a result. Their stories highlight the loss of Inuit knowledge, teachings and practices regarding sexual and reproductive health that occurred as a result of the separation of families at that time (21,30,32,37,38). Second, discussions about sexual health and relation�ships in the families of the participants, if they did occur, focused on teaching children to protect themselves from sexual abuse or abusive relationships. Data from the 20072008 Inuit Health Survey indicated that 41% of adult respondents in Nunavut (52% of women respon�dents and 22% of men respondents) experienced severe sexual abuse in childhood (52). Physical, emotional and psychological consequences of child sexual abuse can per�sist throughout the life course (53). Feelings of power�lessness and betrayal, anxiety, fear, post-traumatic stress disorder (PTSD) and suicidal ideas and behaviour have also been associated with a history of childhood sexual abuse (5356). Shame, guilt, vulnerability, internal frag�mentation, invalidation and cultural shame were some of the feelings reported by Indigenous women victims of sexual abuse in the literature that were also shared by participants in this study as having an impact on their ability to engage their children in a dialogue about sexual health and relationships (57). Previous research has shown that talking about child sexual abuse can be part of a therapeutic healing process for women, which is supported by the perspectives of the women in this study (58). Third, parents highlighted the value that elders and their knowledge hold for them and in their community. They identified a desire to repair and support youth elder relationships to foster dialogue on family, sexual health and intimate or personal relationships when parents are not able to be a support or resource. The parents’ vision of the role of elders in sexual health teaching reflects the Inuit kinship and family structure that was prominent before settlement. From their perspective, repairing that structure is an important part of promot�ing sexual health among adolescents. Previous research has shown that revitalizing Indigenous family and kin�ship perspectives, where they have been disrupted, is an important part of supporting positive, holistic parenting (5962). There are powerful, unresolved traumas and healing issues in Inuit communities related to the challenges Inuit have and continue to experience as a result of colonialism and the transition of Inuit society from one way of life to another (36,6367). The traumatic experiences of the settlement and residential school era continue to have an impact on present-day family relationships and parent adolescent communication both in general and specifi�cally about sexual health. Parents in this study identified a desire to move away from cycles of trauma and to be supported in engaging their children in dialogue about sexual health and relationships with a focus on revitaliz�ing parentadolescent and elderyouth relationships. Considerations and limitations Only the perspectives of those with an interest in sharing their stories were represented in this study. The findings in this study are not representative of the entire population Sexual health communication with adolescent children in Nunavut Citation: Int J Circumpolar Health 2014, 73: 25070 - http://dx.doi.org/10.3402/ijch.v73.25070 5 (page number not for citation purpose) on the topic of sexual health, only the subset that had a story they wanted to share in 3 of 25 Nunavut commu�nities. Given the historical and geographical differences between communities, there are a number of stories and perspectives on sexual health and relationships in Nuna�vut that could be explored in future research. In parti�cular, future research should expand on this study to explore the perspectives of Inuit adolescents on the sources of knowledge about sexual health that they value as well as how to support survivors of child sexual abuse to have meaningful conversations with their children about sexual health. Conclusion The results of this study highlight the importance Inuit parents place on engaging with children in a dialogue about sexual-health and relationships. Parents described events in the greater community and temporal context of Nunavut that they perceived to be barriers to commu�nicating with their children about sexual health. They identified elders in their communities as supports for young people. This would be a positive contribution to the revitalization of Inuit kinship structure that existed before the displacement of families during settlement. The findings provide direction to public health pro�grammes, services and practitioners to expand current strategies by including greater support for parentchild and elderyouth dialogue about sexual health and relationships in Nunavut. Healing and counselling ser�vices must be made available to families as part of this process, given the significant role child sexual abuse played in the lives of the parents in this study. Acknowledgements A heartfelt qujannamiimaarialuk to the parents who shared their stories with me for this study. We learned from each other and I am grateful to have had the opportunity to share experiences as Nunavummiut. This study was acknowledged and supported in principle by Nunavut Tunngavik Inc. and the Chief Medical Officer of Health, Geraldine Osborne. Many relationships (new and existing) were fostered across multiple communities during the various stages of this project with individuals to whom I also express gratitude: Jason Akearok, Shirley Tagalik, Sarah Curley, Marie Ingram, Madeleine Cole, Theresa Koonoo, Sharon Edmunds�Potvin, Candice Lys, Jennifer Noah, Lissie Anaviapik, Ceporah Mearns, Dionne Gesink, Gillian Einstein and Ted Myers. Conflict of interest and funding A small stipendwas provided by the Northern Scientific Training Program of Aboriginal Affairs and Northern Development Canada in 2011. References 1. NDH&SS. Sexually transmitted infections in Nunavut 2006 2011. Iqaluit, NU: Nunavut Department of Health and Social Services; 2012. 2. Healey GK. Community-identified health priorities for Nunavut. Iqaluit, NU: Qaujigiartiit/Arctic Health Research Network Nunavut; 2006. 3. Healey GK. Report on health research ethics workshop and community consultation in Iqaluit, Nunavut. 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Exploring sustainability among community-based health interventions in Nunavut communitiesGwen Healey

This is about a case study of being able to get sustainability for mental health promotion interventions in northern communities, particularly in indigenous world …

EnglishᐃᓄᒃᑎᑐᑦExploring sustainability among community-based health interventions in Nunavut communities A Case Study. Prepared by: Gwen K. Healey, PhD, Executive and Scientific Director, Qaujigiartiit Health Research Centre and Assistant Professor, Northern Ontario School of Medicine Prepared for: Innovation Strategy, Public Health Agency of Canada, Government of Canada. JULY 2016 Page 1 of 13 Introduction In 2009, the Qaujigiartiit Health Research Centre project entitled ‘Child and Youth Health and Wellness Research, Intervention and Community Advocacy Project’ was funded by the Public Health Agency of Canada’s Innovation Strategy. The original research project was designed to address the mental health needs of children and youth by targeting specific demographics and services. Specifically: • Development, piloting and evaluation of an evidence-based camp program for 10-14 year olds • Development, piloting and evaluation of an evidence-based parenting support program based on the needs identified by Nunavut parents The 2 evidence-based interventions were developed, piloted and evaluated with great success. Despite the evidence base which supported these programs, and the degree to which they met the mandate of programs and services that should be delivered by the Government of Nunavut, the Qaujigiartiit Health Research Centre experienced challenges to the sustainable uptake and delivery of these programs within the health system. Having discussed these challenges with other community-based organizations in the territory, we discovered that this challenge was not unique, and was a common experience among community�based agencies with a health and wellness-related mandate. This case study was undertaken to explore and document the barriers and facilitators to sustainability and scale-up of community-based health and wellness interventions in northern communities. Objective To conduct a case study analysis of barriers and facilitators to obtaining an adequate level of sustainability for mental health promotion interventions in northern communities, particularly those based on indigenous worldviews. This study is timely, as the recent Truth and Reconciliation Commission Calls to Action, identified the need for: • (22) change within the Canadian health-care system to recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders where requested by Aboriginal patients. • (66) federal government to establish multiyear funding for community-based youth organizations to deliver programs on reconciliation, and establish a national network to share information and best practices. The content of the case study includes: a background and contextual review; description of the characteristics of the organizations and their current funding sources; facilitators and barriers to sustained community-based wellness programs; discussion of the findings in comparison with the literature; lessons learned/recommendations/ opportunities for improvement. Page 2 of 13 Qikiqtaaluk (Baffin Island), March 2016. Photo Credit: Gwen Healey Background This case study is nestled within a larger field of the public health literature related to ‘implementation science’ [1]. Implementation science is a newer term, which is being applied to the use of strategies for adopting and integrating evidence-based health interventions and changing health practice patterns in specific settings. Research on implementation addresses the level to which health interventions are successfully delivered within public health and clinical service systems. Some examples of implementation science research can include, but is not limited to [1]: • Comparisons of multiple evidence-based interventions • Identification of strategies to encourage provision and use of effective health services • Identification of strategies to promote the integration of evidence into policy and program decisions. • Appropriate adaptation of interventions according to population and setting • Identification of approaches to scale-up effective interventions • Development of innovative approaches to improve healthcare delivery • Setting up an impact evaluation for a population based intervention Intervention strategies usually target high-risk individuals or populations by a variety of means, such as strengthening protective factors or eliminating risk factors, to achieve positive outcomes. In recent decades, there has been an increasing movement in public health and prevention science to study the cultural adaptation of interventions and their implementation [2-4]. Among the literature about mental health programs developed for First Nations, Inuit and Metis peoples, accounts of the cultural adaptation process tend to begin with the identification of an intervention designed for a specific population, which is then adapted to be inclusive of socio�cultural expectations or language of the target First Nations, Inuit, and/or Metis audience. However, much of the implementation of such interventions occurred at the community-level, and community members have had a heightened awareness of the numerous cultural and contextual factors that often contribute to a misalignment between these ‘adapted programs’ and the values, goals, and activities that are needed in community�based wellness programs. In other words, community members have often had trouble implementing programs designed using this model. As a result, many community organizations have attempted to reverse this process by, instead, focusing on the development, implementation, and evaluation of interventions designed by and for Inuit in Nunavut – and measuring them. These interventions are embedded in the social context, language, and values of the population for whom they are designed. At the time of this case study, this innovative and responsive approach to community wellness programming has not been sustained by current funding models or policies. This compromises several critical aspects of implementation particularly related to promoting innovation and scale-up in northern communities The purpose of this case study was to explore some of the barriers and facilitators to the implementation and sustainability of community�based wellness programs in Nunavut. Page 3 of 13 Aqsarniit (northern lights) near Iqaluit, Nunavut. Photo Credit: Jimmy Noble Jr. 2016 Method This exploratory case study was conducted within an Indigenous knowledge framework with a focus on Inuit ways of knowing, specifically, the Piliriqatigiinniq Partnership Community Health Research Model [5]. The model highlights five Inuit concepts, which informed the research approach: Piliriqatigiinniq (the concept of working together for the common good); Pittiarniq (the concept of being good or kind); Inuuqatigiittiarniq (the concept of being respectful of others); Unikkaaqatigiinniq (the philosophy of storytelling and/or the power and meaning of story); and Iqqaumaqatigiinniq (the concept that ideas or thoughts may come into ‘one’). The study was designed to respond to a community request, and was implemented collaboratively with community wellness centres, emulating the concepts of Piliriqatigiinniq and Inuuqatigiitsiarniq. A purposive sampling strategy was used to invite 4 directors or staff of 3 regionally distinct community�based organizations in Nunavut to participate in this case study. Narratives were collected in telephone interviews from staff at organizations with a mandate to develop and/or deliver community-based health and wellness programs in the territory. Interviews were conducted in English. They were not recorded, although notes were taken with permission. With respect for the concept of Unikkaqqatigiiniq, participants were asked open�ended questions about their experiences implementing community-based wellness programs and achieving sustainability for those programs in the community. An analytical approach building on the concept of Iqqaumaqatigiiniq (all knowing coming into one), “immersion and crystallization,” was used to identify elements in the data related to community-based programming, barriers and facilitators to implementing innovative responsive programming, and solutions to some of the challenges [5, 6]. Through a process of reviewing notes, reports, statistics, and discussing various topics, key themes crystalized in the data. A rigourous, respectful, and mindful process was followed for the data analysis, which included: the comparison of findings to the known literature on the topic [7]; reflexivity and bracketing of researcher perspectives before and during the study ([8]; and discussion of findings with colleagues [9]. Findings The findings are presented below under 4 sub�headings: • The characteristics of the organizations • Funding sources for community-based health and wellness programming in Nunavut • Perceived barriers to sustained community�based mental health and wellness programs • Perceived facilitators to sustained community�based mental health and wellness programs Characteristics of the organizations Four community-based health and wellness centres were included in this case study from 3 regionally distinct regions in Nunavut. • The organizations had all been in existence in some form for 10 years or more. • They provided employment to between 15 and 100 people in various jobs, full- and part-time in the communities they serve. Page 4 of 13 Making Palaugaaq (bannock). Makimautiksat Camp in Cambridge Bay. March 2016. Photo Credit: Moriah Sallaffie • The organizations deliver programs targeted toward community wellness, which can include, but is not limited to: • Canadian Prenatal Nutrition Program • land-based programs (elders/youth, healing, harvesting, etc.) • support for new parents and parents of young children • skill-building, such as qamutik-building, sewing, and crafting • talking/healing circles • youth camps • men’s groups • cooking and nutrition-related programs • healing/counselling support • None of the organizations had, at any time, received core operational funding from any source. They have operated on proposal-based funding, primarily on 1 year contribution agreements and, on some occasions, 3 or 5 year contribution agreements with funders. • All of the organizations had participated in various evaluations of their programming over the years and have evidence to support the success of their programs. • Two of the organizations had their funds managed by the Hamlet office and the other 2 operated as independent societies under the Nunavut Societies Act and had independent financial management. Funding sources for community-based health & wellness programming in Nunavut The organizations identified several funding sources to which they apply for funding for various initiatives at their organizations: Local-level funding from the Hamlet or from a community group, such as the food bank, soup kitchen, or volunteer group Proposal-based territorial-level funding from the Government of Nunavut such as Community Cluster Program Funding (territorial funding administered by hamlet councils); or Food Security Coalition Funding (new in 2016) Proposal-based federal-level funding such as PHAC Sexual Health Program; PHAC Injury Prevention Funding; Health Canada funding for counselling services Foundation funding such as Aboriginal Healing Foundation (now closed); Movember Foundation; and Canadian Women’s Foundation. Page 5 of 13 Figure 1. This word cloud was developed from the content of the interviews with participants in this case study. The larger the word, the greater the frequency with which it was used in the discussion. University and researcher partnerships to access CIHR or SSHRC funding for program pilots or videovoice/documentary research about Inuit health Crowd-sourcing for specific items, such as camping gear, equipment, or airfare. Perceived Barriers to Program Sustainability and Scale-up Gatekeepers. Gatekeepers were perceived as individuals working in the system, such as the municipal, territorial, or federal funding systems, who have the power/capacity to ensure a project is funded, or to remove funding entirely. In a small region, such as Nunavut, where funding processes can be dependent on the activities of one individual, gatekeepers can be the difference between a program be offered or canceled in any given year. “Often, a single person holds the access to the money you want to get at. Personal agendas can play a role. A lot of it boils down to actual people making decisions and their agendas and biases. It matters whether you get along with [a contact] at the dept. you are trying to get funding from. They will advocate for you or not. They will route it [the application] to the right places or they won’t.” Gatekeepers were not only viewed as crucial in obtaining funding in the system, but also as individuals in crucial supervisory roles, who either supported staff to deliver programs that best addressed the needs of the community or, if employed elsewhere in the community, to contribute their expertise to the successful implementation of community wellness programs. An example was given of a gatekeeper in a supervisory role who removed a staff member from actively implementing a successful multi-year community-based program without cause or explanation. Such actions are not uncommon among gatekeepers, and are punitive, controlling, and counter to the overall goals of the system, which are to provide care and services to the communities. Political interference/influence - municipal, territorial, federal. In one example provided in an interview, a successful program, which had demonstrated excellent outcomes for several years, lost its funding because the political leadership at the territorial level felt that the mechanism that was being used to deliver the health programming was no longer of interest and they wished to see funds diverted elsewhere. An example of municipal-level political interference resulted in the same outcome for another program. Therefore, two successful programs with demonstrated health outcomes for the target population were canceled because of what might be characterized as political influence on funding allocations. This is a significant vulnerability in the current system and a real barrier for the community-based programs. Examples of federal-level political ‘interference’ were related to priority swings, for example the priorities of one federal health minister might be related to mental health and the next minister might prioritize family violence prevention, and funding opportunities swing with the priorities. Although, this was viewed as both a barrier to sustainability (if funding is diverted to another priority area) and as a facilitator in cases where an organization was Page 6 of 13 “[It seems] the system is designed to protect the financial status of the Government of Nunavut. Funds are handed out on an annual basis. Because their processes are so slow, the funding doesn’t arrive until half-way through the year. We are expected to cash-manage, with no other sources of income, or our programming lapses while we wait for funds to arrive….We are required to provide multiple financial reports. In some cases, financial reports are requested from us before the funds even arrive. The processes are ridiculous. In cases where the funds are devolved from the territory to the hamlet or town council, the process is even longer. We have to do this every year. These long, arduous, resource�consuming processes do nothing to improve community wellness. They are designed to protect the government’s financial system….What if they took more chances and gave more long-term, guaranteed funding to communities for health and wellness programming? What would that look like? … Has anyone bothered to look at a systems-level change that would put funds in the hands of community organizations that affect change, instead of in the hands of managers and finance clerks who turn over every year?” - Case study participant seeking opportunities to branch into other topic or program areas. In addition, the example of the elimination of Aboriginal Healing Foundation funding for community-based programs was highlighted as a federal-level funding decision which had a significant impact on the sustainability of community-based mental health and healing programs in Nunavut. Systemic funding blocks. The way in which funds are allocated and distributed within the system was viewed as a barrier to sustainability. For example, the requirement to re-submit proposals for on-going programming such as cooking clubs or youth and elders groups on an annual basis was viewed as a significant systemic funding block. One case study participant stated, “Managing the risk of a community organization mis-spending funds has become more important than managing the risk of a young person dying by suicide - because the programs that help youth and families can’t access the funding to implement supportive programs in a timely and consistent way.” In addition, multiple layers of review and program management at the territorial level were viewed as prohibitive to the timely and successful implementation of community-based wellness programs. Disconnect between program and financial mechanisms at the territorial level. Program staff may make commitments in support of community-based program implementation, which finance staff will not support. In the words of one case study participant, “There is a systemic something happening in the Government that creates a cyclic short�sightedness.” An example was given of an organization entering into a funding agreement with a specific health program to deliver training, which included a clause for a percentage of the funding to be provided in advance to help the small organization to cash�manage the project. The finance clerk refused to execute the clause and allow the funding to be provided in advance. This is another example of vulnerabilities in system implementation that prohibit the actions needed to support community�based wellness program implementation and sustainability. High-turnover of management and admin staff. The Government of Nunavut experiences a high rate of employee turnover. Community organizations are acutely affected by this turnover, particularly with regards to developing meaningful partnerships and relationships which are required for implementing innovative programming or scaling-up. It also exacerbates the issue related to gatekeepers by placing greater reliance on few individuals in the system with the responsibility to process contribution agreements or payments. This can inadvertently allocate more power to gatekeepers whose beliefs or behaviours do not align with community-based programs. In one example, a community-based organization was in the process of entering into a contribution agreement with a territorial department, when the staff member overseeing the agreement resigned. The agreement was never processed as a result because no other staff member was assigned to see it through. This happened on two occasions to the same organization within the last 3 years. In both cases, the projects never received the funding and the programs were not delivered. In resource-limited community organizations, the time spent developing proposals is wasted when the proposal does not get to the contribution agreement stage. It is viewed as a significant draw on time and energy that could be spent on meaningful community health programs. In the words of one participant, “Fifty percent of [my] time is spent asking for money, 25% of time [my] running programs that may not be our primary focus, but generate the revenue that pays the rent. The rest of the time, I work on the programs that I know our community wants and needs. Time spent searching for core funding could be spent implementing the programs - imagine what that would look like.” Socio-cultural awareness. One of the greatest challenges to implementing the health care system in Nunavut is the system’s reliance on short-term health professionals, including health program managers and administrators. The challenges of providing programs in this context are further exacerbated by the fact that many of the staff in the system are not oriented to the Inuit historical context, cultural traditions, or societal values. As a result, community-based organizations identified challenges related to miscommunication or misunderstandings due to language, and cultural barriers, such as not understanding societal values Page 7 of 13 related to relationship-building, crafting, caregiving, storytelling, justice, the role of the land in wellness, and the importance of artistic expression in mental health. This translated into barriers acquiring support and favourable reviews of projects, such as in the example, below, “If [a gatekeeper] really likes a land-based program, for example, and gets it, they would be more likely to advocate for it in the review process. If they think ‘oh, they are just trying to go camping’, then they won’t appreciate the importance of passing on that proposal.” Perceived Facilitators of Program Sustainability and Scale-up Champions in the system. Champions were perceived as individuals working in the system, such as the municipal, territorial, or federal funding systems, who are the gatekeepers advocating for community organizations. They were viewed as individuals who were supportive of community�based programming and advocated for resources for community programs in different ways, for example, by advocating for funding proposals, by helping to write documents in support of community programs, by donating staff time in-kind to program implementation, or by advocating publicly in the media or on community radio. Shaw et al. (2012) argue that practice transformation requires a sustained improvement effort that is guided by a larger vision and commitment and assures that individual changes fit together into a meaningful whole. Change champions – both project and organizational change champions – are critical players in supporting both innovation�specific and transformative change efforts [10]. Community strengths and determination. The creation of Nunavut was about self-determination and self-governance. In Nunavut, community�based health programs are grounded in Inuit ways of knowing and understanding wellness. Such models are not only essential for public health, but they are also a critical part of on-going self�determination and decolonization processes for indigenous communities throughout the North and around the world. Participants identified that Nunavummiut have strengths, capacity, and capabilities which contribute positively to health. They also talked about their drive and dedication to ensure their programs continue in spite of the challenges. “[We are] being creative, tenacious. It’s our strategy… Write 5 proposals and hope one gets funded - that is the way we have been able to survive.” Community members know and understand the pathways to wellness that work for Nunavummiut, and we should build on them to implement health programs that can meaningfully address health outcomes. Growing evidence-base to support work. There has been an increase in the number of publications in the peer-reviewed and grey literatures which highlight evaluation findings from community-based wellness programs. This information, which may have only rested with the funding agency previously, is increasingly being made public to share innovative approaches. These are very important contributions to the literature on the topics of community-developed interventions from indigenous communities, evaluation, and the diversity of methods that can be applied to improve health outcomes in northern communities [11-16]. This evidence base is useful for organizations that are advocating for meaningful funding agreements for programs that are proven to be making a difference in northern communities. On-going training opportunities. Participants in this case study identified that there is often good support for new or on-going training in different community-based health initiatives, such as ASIST Suicide Intervention Training; Mental Health First Aid; nutrition, cooking and food safety courses; breastfeeding support; tobacco cessation, and specific training for community-based alcohol and Page 8 of 13 Sunrise after the sun’s return to Clyde River in late January. 2016. Photo Credit: Gwen Healey drug counsellors. However, it was also noted that the availability of training opportunities is usually attributed to the high rate of turnover in government-level positions, and the need for constantly re-training new staff. Communities make the most of this situation by participating in training opportunities when they become available. Discussion Several barriers to achieving sustainability of community health and wellness programs were identified in the case study. Systemic funding blocks; gatekeepers; political interference/influence; disconnect between program and financial mechanisms at the territorial level; high turnover of management and admin; and cultural awareness among senior program staff who turnover regularly. These are not new challenges to any health and wellness care system - however their constant and persistent presence in Nunavut is problematic. Systemic challenges must be addressed at all levels. These challenges may arise from the fact that community-based wellness programs are not included as a meaningful component of the system design. Community organizations believe their programs and services are not valued or viewed as part of the continuum of health care services available in northern communities. However, community-based health and wellness programs provide essential services that are not available through the remainder of the system, particularly in communities that understaffed or under-resourced in other aspects of the health care system. As such, they should be core-funded, and not dismissed as annual or 2-3 community projects. Harnessing the strengths of communities is one of the key components to moving forward and achieving sustainability. Encouraging people in gatekeeping positions to be champions is easy and important first step. Recognizing and building on community strengths and determination, and the growing body of evidence to support the work being done, is also an important step in advancing scale-up and sustainability opportunities. Continued and on-going learning opportunities are also important to implement, as the state of community health is dynamic, not static, and new learning opportunities are always needed. The findings from this small case study echo a larger body of literature on health funding structures, healthcare innovation, health systems for Canada’s indigenous peoples, and and the science of implementation in Canada. These topics are discussed further, below. 1) Funding system based on risk/probability of fund mis-use One of the systems-level challenges identified by some of the participants in this case study, included how the community wellness funding system is implemented to mitigate financial risk of the funder. Similarly, Naylor et al. (2015) also discuss the ‘risk�averse culture’ of the Canadian healthcare system in a Report of the Advisory Panel on Healthcare Innovations (pp.19): “A risk-averse culture: It is unsurprising that healthcare delivery systems are risk-averse. Mistakes can be fatal. However, some stakeholders argued that the precautionary principle in clinical care had pervaded the organization and finance of the system as a whole, contributing to stasis and impeding the spread of innovation. Until a change in culture is signalled … leaders in the system may be reluctant to confront those who have a vested interest in the status quo… “ When combined with the challenges of gatekeeping and ebb-and-sway of political priorities for funding, this challenge appears insurmountable to community organizations. Page 9 of 13 Youth and Elder games at Makimautiksat Camp, Cambridge Bay, NU. 2016. Photo credit: Moriah Sallaffie 2) Health innovations suffer in a fragmented, risk-averse health care system In Canada, the discourse on healthcare innovations spans from systemic and financial innovations to frontline care delivery to public health programming and health promotion to applications of health technology, design, and architecture. Some challenges that are apparent at the national level are felt at the territorial and community-level as well. In particular, the Report of the Advisory Panel of Healthcare Innovations identified several elements causing fractures and delays in optimal healthcare system implementation [17]. Of particular relevance to Nunavut are the challenges of operating within a fragmented system; the lack of effective use of digital technologies; and inadequate focus on understanding and optimizing innovation. System fragmentation: The system appears to be burdened by a lack of integration which effectively stifles innovation, particularly the spread of innovation between organizations and across jurisdictions. Managers and professionals acknowledged that patients and families lose the most in a poorly-coordinated system. Lack of integration was identified as the single most important barrier to innovation. Lack of effective deployment of digital technology: Nunavut is very far behind in terms of harnessing the power of digital technology for telehealth, public health, training, chronic disease management. Much of this can be attributed to the lack of investment in Norther n Canada’s tele�communications infrastructure, which was recently highlighted in a hearing of the Canadian Radio and Telecommunications Commission on northern telecommunications [18]. Canada is also behind in the deployment and meaningful use of electronic medical and health records. These factors underpin the lag in health data generation and information management capacity, and reduces the responsiveness of our healthcare systems, including public health and community-based health programs, to timely action and innovation. In Nunavut, an electronic records management has been slow to be piloted and implemented on a wider scale. Inadequate focus on understanding and optimizing innovative practices that benefit the health of communities: The Report of the Advisory Panel on Healthcare Innovation reports that healthcare systems leaders make decisions that are “short�term and politicized” [17] (pp.19). In this report, a lack of overarching vision for Canada's healthcare systems was noted, and the authors called for greater clarity of objectives and firmer follow�through on priorities for innovation, architectural changes to the system, and rules of engagement for participation by innovators from the public and private sectors. The authors also noted a lack of both mechanisms and the political will to spread, scale up, and sustain high-potential innovations, which were also challenges identified in this case study. 3) Recommendations from the Truth and Reconciliation Commission Calls to Action regarding the healthcare system Some of the barriers and facilitators described in this case study were also noted in the Truth and Reconciliation Commission’s Calls To Action [19]. Specifically, the following recommendations are relevant to this discussion: Page 10 of 13 5-year old on first hunt for ptarmigan. 2015. Photo credit: Gwen Healey 21. We call upon the federal government to provide sustainable funding for existing and new Aboriginal healing centres to address the physical, mental, emotional, and spiritual harms caused by residential schools, and to ensure that the funding of healing centres in Nunavut and the Northwest Territories is a priority. 22. We call upon those who can effect change within the Canadian health-care system to recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders where requested by Aboriginal patients. 23. We call upon all levels of government to: i. Increase the number of Aboriginal professionals working in the health-care field, ii. Ensure the retention of Aboriginal health-care providers in Aboriginal communities, iii. Provide cultural competency training for all healthcare professionals. 24. We call upon medical and nursing schools in Canada to require all students to take a course dealing with Aboriginal health issues, including the history and legacy of residential schools, the United Nations Declaration on the Rights of Indigenous Peoples, Treaties and Aboriginal rights, and Indigenous teachings and practices. This will require skills-based training in intercultural competency, conflict resolution, human rights, and anti-racism. 66. We call upon the federal government to establish multiyear funding for community-based youth organizations to deliver programs on reconciliation, and establish a national network to share information and best practices. 4) Integrating research findings into health care policy and practice - scaling up and the science of implementation Returning to the beginning of this case study, this topic is relevant to the literature on the science of implementation and the use of strategies to integrate evidence-based health interventions in specific settings. Further to this concept is the idea of ‘scaling-up’ successful interventions. Scaling up in the health sector means “doing something in a big way to improve some aspect of a population’s health” [20]. It can be applied to scaling up inputs; outputs (access, scope, quality, efficiency); outcomes (coverage, utilization) or impact (reducing morbidity or mortality). While implementation science literature examines the methods to promote the integration of research findings and evidence into healthcare policy and practice, ‘scale-up’ literature examines the resources and systems which are necessary for successful scale-up of interventions. More resources are definitely necessary for scale-up, however, there are many other factors that also need to be addressed, including unsupportive laws, complex or outdated management systems or limited demand from the public. According to the World Health Organization, 3 key factors are important to consider for successful scale-up of evidence-based interventions [20]: • Scaling up generally involves a partnership of organizations working on service /program delivery, financing and/or stewardship (co�ordination, regulation etc.). • Scaling up generally requires a highly committed group of individuals to push it along. • Monitoring implementation of the scale-up is crucial for assessing progress relative to overall objectives and for identifying aspects of the scale-up which are not working well. In practice, this is often a neglected aspect of scaling up. It seeks to understand the behaviour of healthcare professionals and other stakeholders as a key variable in the sustainable uptake, adoption, and implementation of evidence-based interventions. In the scale-up literature, the behaviour of individuals, working as a collective, are also an essential component in success. Page 11 of 13 Youth and elders in Gjoa Haven, NU playing the ‘Atii Gameshow’ - an evidence-based intervention developed by Inuit youth for Inuit children to promote health literacy, nutritious foods and physical activity. Photo Credit: Tracey Galloway. In this case study, several barriers and facilitators to the sustainable uptake of interventions were identified. Many of the challenges will require a systemic shift in order to be addressed, however other barriers, particularly challenges which are embedded in the behaviours of gatekeepers in the system can be eliminated with training, awareness, and encouragement. In addition, the actions of the collective of community organizations that exist to advance health in their communities can and should be harnessed to ensure evidence-based interventions are implemented and scaled as needed/wanted. Lessons Learned Taking these findings into account, there are a number of important key messages: • Community-based organizations/centres provide a core service to the community - particularly communities that are under�resourced in the health or social services sectors • Community members need and deserve sustainable and reliable services/programs, which cannot be sustained by community organizations without core base funding. • The territorial or federal governments often lack the human resources and local knowledge to implement programs/services effectively. • A systems shift is needed to recognize community-based health services/programs as an essential part of the continuum of health services in Nunavut and to provide adequate funding for such. • Barriers to the sustainability of community�based health services/programs that are embedded in the behaviours of gatekeepers in the system could be eliminated with training, awareness, and encouragement to find creative opportunities in the system to meet existing needs. • Individual behaviours (e.g. gatekeepers or champions) and collective behaviours (e.g. committed interagency or multi-agency collaborations/advocacy) are important factors in scale-up and implementation of evidence�based public health interventions. Our individual and collective efforts as ‘change champions’ are critical in supporting both innovation-specific and transformative change efforts [10]. Acknowledgements Each of the organizations that shared time and experience to contribute to this case study are gratefully acknowledged. Individuals working tirelessly in communities and as champions in the system to make a positive contribution to health and wellness of our communities now and for the next generation are also gratefully acknowledged. This case study was developed independently and its content does not necessarily reflect the views of the Public Health Agency of Canada. Page 12 of 13 Grade 9 students in Iqaluit, NU participate in an arts-based workshop develop in Nunavut entitled Timiga Ikumajuq (“My Body, The Light Within”), which harnesses the storytelling power of Inuit performance arts and contemporary dramatic arts to engage youth in discussions and skits about important topics in sexual health and relationships. 2012. Photo Credit: Gwen Healey Bibliography 1. Madon, T., et al., Public health. Implementation science. Science, 2007. 318(5857): p. 1728-9. 2. Backer, T., Finding the Balance—Program Fidelity and Adaptation in Substance Abuse Prevention: A State-of-the Art Review. 2001, Center for Substance Abuse Prevention,: Rockville, MD. 3. Kumpfer, K.L., et al., Cultural Sensitivity and Adaptation in Familty-based Prevention Interventions. Prevention Science, 2002. 3(3): p. 241-8. 4. Castro, F., Barrera Jr., M., Martinez Jr., C., Cultural Adaptation of Prevention Interventions: Solving tensions between fidelity and fit. Prevention Science, 2004. 5(1): p. 41-45. 5. Healey, G. and A. Tagak Sr., Piliriqatigiinniq 'working in a collaborative way for the common good': A perspective on the space where health research methodology and Inuit epistemology come together. International Journal of Critical Indigenous Studies, 2014. 7(1): p. 1-14. 6. Borkan, J., Immersion/Crystallization, in Doing Qualitative Research. (2nd Edition), B. Crabtree and W. Miller, Editors. 1999, Sage Publications. Pp.: Thousand Oaks, CA:. p. 179-94. 7. Meadows, L.M., A.J. Verdi, and B. Crabtree, Keeping up appearances: using qualitative research to enhance knowledge of dental practice. Journal of Dental Education, 2003. 67(9): p. 981-90. 8. Crabtree, B. and W. Miller, Research Methods: Qualitative., in Oxford Textbook of Primary Medical Care, R. Jones, et al., Editors. 2004, Oxford University Press: Oxford UK. p. 507-511. 9. Mays, N. and C. Pope, Qualitative Research: Rigour and qualitative research. British Medical Journal, 1995. 311. 10. Shaw, E., et al., The role of the champion in primary care change efforts. Journal of the American Board of Family Medicine, 2012. 25(5): p. 676-685. 11. Kalluak, M., Inunnguiniq Parenting Program Facilitator's Manual; with contributions from the Nunavut Dept. of Education Elders Advisory Committee and Curriculum and School Services, in Inunnguiniq Parenting Program, S. Tagalik and M. Joyce, Editors. 2010, Qaujigiartiit Health Research Centre: Iqaluit, Canada. 12. NCCAH, N.C.C.f.A.H. The Role of Inuit Knowledge in the Care of Children. 2011 [cited 2013 October 10]; Available from: http:// www.nccah-ccnsa.ca/274/ Inuit_Knowledge_in_the_care_of_children__a_fact_ sheet_series.nccah. 13. Healey, G., Inunnguiniq Parenting Program: 2010-2015 Final Evaluation. 2015, Qaujigiartiit Health Research Centre=: Iqaluit, NU. 14. Mearns, C. and G. Healey, Makimautiksat Youth Camp Final Evaluation 2010-2015. 2015, Qaujigiartiit Health Research Centre: Iqaluit, NU. 15. Mearns, C., J. Noah, and G. Healey, The Eight Ujarait/Rocks Model for Adolescent Youth Programming in Nunavut, Canada. 2015, Qaujigiartiit Health Research Centre: Iqaluit, NU. 16. Redvers, J., et al., A Scoping Review of Indigenous Suicide Prevention in Circumpolar Regions. International Journal of Circumpolar Health, 2015. 74: p. 1-10. 17. Naylor, D., et al., Unleashing Innovation: Excellent Healhcare for Canada. Report of the Advisory Panel on Healthcare Innovation., A.P.o.H. Innovation, Editor. 2015, Government of Canada: Ottawa, ON. 18. Dobby, C., Nunavut plagued by high-cost, low-speed Internet, CRTC hears, in GLobe and Mail. 2016, Crawley, P.: Toronto. 19. TRC, T.a.R.C.o.C., Truth and Reconciliation: Calls to Action, T.a.R.C.o.C. TRC, Editor. 2015, Truth and Reconciliation Commission of Canada TRC: Winnipeg, Manitoba. 20. WHO, W.H.O., Scaling Up Health Services: Challenges and Choices. WHO Technical Brief. 2008, World Health Organization WHO: Geneva, Switzerland. Page 13 of 13other
Qaujigiartiit Arctic Health Research Network – NunavutGwen Healey

Talks about the components of the Arctic Health Research Network, funding, the board of directors, and …

Englishᐃᓄᒃᑎᑐᑦreport, components of the Arctic Health Research Network, funding, the board of directors, ethics, common themesother
Perspectives of primary care providers on the topic of medevac communication and rural practice in Northwest Territories and NunavutLeah, McDonnell, Gwen Healey

A survey in 2016 on health care perspectives of personnel that worked in the North West Territories and Nunavut on clinical support, medical evacuation proedures, scope of practice, and primary care …

Englishᐃᓄᒃᑎᑐᑦreport, scope of practice, health care personnel, nurses, physiciansother
Reducing the Social and Economic Stress for Women Living in Rural and Remote Communities to Give Birth: A Pilot Study on the use of Fetal Fibronectin Testing ‘At Term’Reducing the Social and Economic Stress for Women Living in Rural and Remote Communities to Give Birth: A Pilot Study on the use of Fetal Fibronectin Testing ‘At Term’Gwen Healey, Alexander MacDonald, Jude Kornelsen, Stefan Grzybowski, William Hogg

Details a pilot study on fetal fibronectin and the participation of the …

EnglishᐃᓄᒃᑎᑐᑦFetal Fibronectin Pilot Project in Nunavut• Community Report Next Steps The fetal fibronectin team is committed to finding a way to best meet the needs of rural pregnant women and families, and are continuing to explore options to improve maternal care in rural and remote communities. Reducing the Social and Economic Stress for Women Living in Rural and Re�mote Communities to Give Birth: A Pilot Study on the use of Fetal Fibronectin Testing ‘At Term’ community report This community report was prepared by the Fetal Fibronectin Research Team. Funding for this project was provided by the Department of Family Medicine at the University of Ottawa and Department of Health and Social Services in Nunavut, and support was provided by Quajigiartiit Arctic Health Research Network, Nuna�vut and Quillit Nunavut Status of Women Council. The research team would like to express gratitude to each of the women and families who participated in this project. Principle Investigators Gwen Healey, MA, PHD candidate Executive Director Quajigiartiit/Arctic Health Research Network Nunavut ahrn.nunavut@gmail.com Alexander MacDonald, MD Director, Medical Affairs Health and Social Services The Government of Nunavut wMacDonald2@gov.nu.ca Jude Kornelsen, PhD Co-Director, The Centre for Rural Health Research, British Columbia jude@saltspringwireless.com Stefan Grzybowski, MD Co-Director, The Centre for Rural Health sgrzybows@interchange.ubc.ca William Hogg, MD Director C.T. Lamont Primary Health Care Re�search Center University of Ottawa whogg@uottawa.ca Research Team Annie Aningmiuq Natasha Stephen Mandie Bzdell Rob Nevin Melanie McDonald Dr. Elizabeth Muggah Fetal Fibronectin Pilot Project in Nunavut• Community Report WHAT DID WE LEARN Participation The fetal fibronectin pilot study established that women are willing to participate in a project looking at the use of fFN to predict the delay in labour ‘at term.’ Out of the 30 women who participated, only 2 women stopped participating. Most women showed up to all of their appointments and the evaluations reflected that participants felt comfortable in the testing environment and with the testing schedule. In total 135 tests were collected. Out of the 30 women who participated in the study, only 17 women’s test results were included in the final analysis. The test results of 13 participants were excluded from the study due to one of the following factors: participant dropped out of the study, par�ticipant delivered before a sample was col�lected, participant had a medical condition (pre-eclampsia); participant received a posi�tive fFN score on their first test; participant received a cesarean section or induction so did not deliver vaginally. Fetal Fibronectin Pilot Outcomes The Fetal Fibronectin pilot study was important for several reasons. First, it established that women are willing to participate in a study looking at the use of fFN to predict the delay of labour ‘at term.’ Second, it was instrumental in creating a strong research partnership between “Northern” and “Southern” researchers. Further it resulted in clari�fying the research questions and meth�odology required to complete such a study. Based on the pilot test results, it ap�pears that, as the fFN test is currently used with a 50 ng cut-off, the level of fFN in a woman ‘at term’ is not predic�tive of the number of days a woman can stay in the community before giving birth. In order for the test to be useful for rural women, the test needs to be accurate in showing that a negative test result means that women will not go into labour for a minimum of 7 days, which according to our pilot project is not the case. Out of the 17 women included in analyses, 12 women delivered less than 7 days after their last negative fFN test. The fetal fibronectin team is interested in doing a larger study to see if the 50 ng cut-off level that is currently being used in the standard fFN test can be adjusted to be more predictive of the delay of labour in women. Fetal Fibronectin Pilot Project in Nunavut• Community Report Fetal Fibronectin Pilot Project in Nunavut• Community Report GOALS OF THE PROJECT The goal of this pilot project was to examine the use of the Fetal Fibronectin test for rural pregnant women at term. We were interested in answering the following questions: − Can a negative fFN test accurately predict the absence of labour for an adequate amount of time to allow pregnant women to stay in their home communities for longer? − Will women be interested in participating in this study? HOW WE DID THE PROJECT Thirty pregnant women participated in this project and took a series of fetal fibronectin tests starting at 36 weeks. Ethical approval was obtained from the Nunavut Research Institute, the University of British Columbia and the University of Ottawa. Women were recruited at various locations through posters and information sessions provided at the Baffin Region Medical Boarding Home in Iqaluit, the Family Practice Clinic and Qikiqtani General Hospital. Addition�ally, women were recruited through word of mouth and local radio spots. Women consented to undergo fetal fbronectin vaginal swab testing starting at 36 weeks and continuing every 2 days until 39 weeks and then every day until labour. A local research coordinator who was fluent in both English and Inuktitut and was familiar with women’s birthing experience in the Baffin Region coordinated the informed consent process and ensured that the project was conducted in a culturally appropriate way. An obstetrics nurse in Iqaluit conducted the testing in a comfortable and safe environ�ment. The test results were analyzed in the lab to see if the test was positive or negative using a standard cut-off level of 50 ng. Participants received a $50.00 gift certificate to the local grocery store upon their first visit, and then a $25.00 gift certificate at addi�tional appointments until labour. A written evaluation was distributed to each participant at the end of study to gain an understanding of their experience participating in the pro�ject. About the Fetal Fibronectin Project Team The Fetal Fibronectin Pilot Project team is a team of researchers from across Canada who have a strong history of working in rural and remote environments and are interested in understanding how to best meet the needs of rural preg- nant women. The partnership consists of researchers and clinicians from the Department of Health & Social Services in Nunavut, Qaujigiartiit Arctic Health Research Network Nuna- vut, the Centre for Rural Health Research at the University of British Columbia, the Department of Family Medicine at the University of Ottawa, and Qullit Nunavut Status of Womem’s Council. Fetal Fibronectin Pilot Project in Nunavut• Community Report BACKGROUND The Context of Birth in Rural and Remote Communities In Canada, 3,000- 5,000 women a year living in rural and remote communities have to leave their home communities at 36 weeks to give birth, due to a lack of local maternity services. This can create negative health outcomes and social stress for rural women and their families. The fetal fibronectin pilot project team is interested to see if the ‘fetal fibronectin test’ used to predict the onset of preterm labour, would also work for predicting labour ‘at term’ for rural women and their families. If so, women would be able to stay in their home communities for longer, before having to leave to the referral hospital. The Fetal Fibronectin Test During pregnancy a woman’s body produces fetal fibronectin (fFN) which is a protein produced by fetal cells. Research has proven that fFN is an excellent biological marker for an early birth, which is a delivery before 37 weeks. As early birth carries serious health consequences for the newborn, who, depending on gestational age may need immediate access to a highly special�ized level of care, it is important to be able to accurately predict the onset of early labour. Given these good results, Fetal Fibronectin testing is commonly used across Canada to determine if a pregnant woman will go into early labour. Since 2004 fFN testing has been used in Nunavut to reduce the number of unnecessary medevacs. The test has been used over 150 times and has had positive social and economic effects. As clinicians and researchers, we are wondering if the test is as accurate when used at “term” or close to a woman’s due date. Fetal Fibronectin Pilot Project in Nunavut• Community Report Fetal Fibronectin Pilot Project in Nunavut• Community Report The Context of Birth In Nunavut Nunavut, one of Canada’s most rural and remote territories, has a population of 31,000 of which 82% is Inuit. The territory is characterized by: • An extreme physical environment • Isolation (population density of less than one person per square kilometer) • A young population (youngest median age in the Canada [22.3 years]) • A rapid rate of population growth (10.2% increase between 2001 – 2006) • A high unemployment rate (17.4%) Childbirth is honored within the Inuit culture and women are supported by their family, community and traditional knowledge. Leaving these supports at the time of birth can be extremely challenging for the birthing women, her family and her community. Currently in Nunavut, surgical maternity care is only offered at Baffin Regional Hospital in Iqaluit. Midwifery care is offered at the Rankin Inlet Birthing Centre. Pregnant women from all other communities must leave their home at 36-37 weeks to give birth in Iqaluit, Rankin Inlet or in Ottawa, Winnipeg or Yellowknife. In most cases evacuation occurs by scheduled transport flights as there is no road access between communities; occasionally an emer�gency Medevac is required. Nunavut Birthing Statistics (2005) Nunavut Canada # of births in 2005 699 Birth Rate/1000 23.3 10.6 Still Birth Rate/1000 11.3 6.4 Premature Birth 13.3% 7.8 % Due to the high number of women who need to travel to give birth in Nunavut, this pilot project took place in Iqaluit, the capital of Nunavut.other
HEALTH RESEARCH ETHICS IN CANADA’S NORTHERN TERRITORIESGwen K. Healey

This final report outlines the year 1 activities conducted as part of a 3-year tri-territorial grant from the Tri-Territorial Health Access Fund …

EnglishᐃᓄᒃᑎᑐᑦHEALTH RESEARCH ETHICS IN CANADA’S NORTHERN TERRITORIES FINAL REPORT YEAR 1 OF A 3-YEAR PROJECT FUNDED BY THE TRI-TERRITORIAL HEALTH ACCESS FUND ARCTIC HEALTH RESEARCH NETWORK (AHRN) MARCH 2008 w w w. a r c t i c h e a l t h . c a Arctic Health Research Network Yukon This report was prepared by: Gwen K. Healey, B.Sc, M.Sc. Executive Director Qaujigiartiit/Arctic Health Research Network - Nunavut Iqaluit, NU ahrn.nunavut@gmail.com Jody Butler Walker, M.A, M.Sc. Executive Director Arctic Health Research Network - Yukon Whitehorse, YK jody@butlerwalker.ca Sue Heron-Herbert Programs Coordinator Arctic Health Research Network - NWT Yellowknife, NT w w w. a r c t i c h e a l t h . c a Table of Contents Executive Summary 3 Introduction 4 Basic Principles in Health Research Ethics 5 Goals of the AHRN Ethics Project 6 Common Themes in Ethics Across the Territories 7 Licensing 7 Yukon 7 Northwest Territories and Nunavut 8 Principles of Respect 9 Meaningful Engagement 9 Appropriate research methods 10 Ownership, Control, Access and Possession (OCAP) of data 12 Sharing knowledge and communicating results 13 Activities 15 Forming a Tri-territorial Advisory Committee 15 Reviewing community, territorial and national guidelines and literature for ethi�cal conduct of health research 15 Community-researcher research agreements in the territories 15 Health Research Ethics Checklist for Community Proposal Reviewers 16 Evaluating Community Capacity for Ethical Review in the Territories 16 Capacity and Training in Yukon 17 Community-Based Research 17 Training Course 17 Gathering Inuit and community perspectives on ethics in Nunavut 18 Nunavut Ethics Workshop 18 A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 1 Research, Respect and Building Capacity: Negotiating relationships and working together 19 Information about research processes 20 Exploring regional capacity in the NWT 21 NWT Ethics Workshop 21 Recommendations for Ethical Review 22 CBPR Training 23 Documentation of Processes 23 Nature of Informed Consent 23 Community Consultation 23 Research Agreements 23 Conclusion 25 A Way Forward 25 The Arctic Health Research Network 25 Acknowledgments 26 References 27 Literature Consulted for this Report 29 Appendix A – AHRN Tri-territorial Ethics Advisory Committee 33 Appendix B – Terms of Reference for AHRN Ethics Advisory Committee 34 Appendix C - Inuit and community perspectives on ethics in Nunavut 36 Appendix D – Community proposal reviewer checklist (Draft) 39 Appendix E - Whitehorse General Hospital Research Protocol (Summary) 42 Appendix F - Deh Cho First Nation Traditional Knowledge Research Proto�col 44 A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 2 Executive Summary There exists a need throughout the Yukon, Northwest Territories and Nunavut to increase capacity to address issues of health research ethics, and in each territory, the needs are diverse. This final report outlines the year 1 activities conducted as part of a 3-year tri-territorial grant from the Tri-Territorial Health Access Fund (THAF). The goals of this project were to: 1. Develop a tri-territorial strategy for ethical review of health research involving Indige�nous peoples 2. Conduct a survey of existing ethical guidelines and literature that are relevant to north�ern populations. 3. Evaluate community capacity to provide input on ethical review of health research projects by 4. To develop a draft of a Health Research Ethics Checklist for community proposal re�viewers. 5. To consult communities about health research priorities in each region. Common themes in community ethics across the territories were issues related to: • licensing; • principles of respect; • meaningful community engagement; • the use of appropriate research methods; • use of data and ownership, control, access and protection/possession (OCAP) of data; • sharing knowledge obtained from research. Recommendations for institution-based and national ethics review boards evaluating research pro�posals for northern communities are made in this report and include: • Training in community-based participatory research; • Documenting research processes and engagement with community; • Examining the nature of informed consent for participation; • Community consultation; • Community-Researcher Research Agreements It is important that territorial and federal agencies involved in determining and communicating guidelines for institutional research ethics boards in Canada take these findings into account, to ensure that important northern and indigenous perspectives are included as criteria for ethics re�view boards across Canada A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 3 Introduction There exists a need throughout the Yukon, Northwest Territories and Nunavut to increase capacity to address issues of health research ethics, and in each territory, the needs are diverse. This desire to participate in health research underscores the need for community members to bet�ter understand and share their perspectives on health research ethics, and particularly CIHR’s guidelines for the ethical conduct of health research in the North. It also highlights the need for the three territories to collaborate to address issues of capacity in ethical review of health research pro�jects conducted in the North. This final report outlines the year 1 activities conducted as part of a 3-year tri-territorial grant from the Tri-Territorial Health Access Fund (THAF). It is our hope that the ideas discussed in this paper can be reviewed, discussed and individualized by communities, organizations and government so that we may work collaboratively to improve and support ethical review in the North. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 4 Basic Principles in Health Research Ethics The basic principles of ethical health research generally include autonomy, nonmaleficence, be�neficence, and justice as touchstone principles for conducting ethical review of health research proposals (1). Respect for autonomy is based on one’s right to self-determination, which is generally imple�mented through ‘informed consent’. Participants are seen as free-thinking individuals who must be informed about the purpose of the research, the possible harms and benefits associated with par�ticipating, processes to protect confidentiality and privacy, how the data will be used, participant rights and responsibilities, and withdrawal procedures should participants ever wish to withdraw. Once potential participants fully understand the scope and purpose of the research, they are con�sidered enabled to make an “informed” decision about whether to participate. Non maleficence (the principle of doing no harm) and beneficence (the obligation to do good) are operationalized through processes of “minimizing harm” and “maximizing good” in research. Research procedures that knowingly harm individual participants are always unacceptable. Finally, the principle of jus�tice means that all members of society should assume their fair share of both benefits and burdens of health research. It is unacceptable to coercively target vulnerable groups (e.g. children) or, with�out good reason, to ban a whole group (e.g. women) from studies that might benefit them. These principles maintain that morally acceptable ends and means should guide all research methodolo�gies and processes. Ethical dilemmas are a continuing problem in health research. Particularly, a focus on “individual ethics” has left some communities vulnerable to risks, for example, research conducted to advance academic careers at the expense of communities; wasting resources by selecting community�inappropriate methodologies; communities feeling over-researched, coerced or misled; researchers stigmatizing communities by releasing sensitive data without prior consultation; and communities feeling further marginalized by research (1). Finally, a particularly damaging effect of traditional research is that researchers often do not give back to communities. Most blatantly, findings are not shared with community members, and more commonly, researchers have done little to build ca�pacity within communities. The Arctic Health Research Network is playing a larger role in building community capacity for meaningful engagement with researchers coming to northern communities in an effort to change the power imbalance inherent in northern health research of the past. In addition, as is described in the following section, AHRN can play a role in the development, application and promotion of ethical guidelines for best practices in northern health research. It is our hope that the work con�ducted for this paper will provide the foundation upon which we continue to build ethics capacity in the North. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 5 Goals of the AHRN Ethics Project Arctic Health Research Network (AHRN) in each territory has a mandate to serve as a resource centre for health research activities and to seek opportunities for educational partnerships in health research with a focus on Inuit, First Nations and other northerners’ health issues. As an organization designed to assist in the creation of community driven, northern lead, health and wellness research units, AHRN has a role to play in the development, application and promo�tion of ethical guidelines for best practices in northern health research. The AHRN in each Territory is managed by a Board that is independent from the Boards in the other 2 territories, facilitating responsiveness to Territory-specific issues and priorities, including ethics. Communications are maintained between the three sites through regular communications between staff and an annual face to face meeting of Board Chairpersons and Executive Directors, contributing to the development of pan-Territorial outcomes such as this report. To address these mandates, literature reviews, community consultations and educational work�shops are an imperative part of the process of gathering information on community needs and in�volving community members in issues of health research. The goals of this project were to: 1. Develop a tri-territorial strategy for ethical review of health research involving Indige�nous peoples • created a tri-territorial Advisory Committee to guide Arctic Health Research Network’s ethics-related projects 2. Conduct a survey of existing ethical guidelines and literature that are relevant to north�ern populations. 3. Evaluate community capacity to provide input on ethical review of health research projects by • generating discussion among community members and organizations about health research ethics and how to work together to address our capacity needs • conducting consultations on health research ethics and Inuit/community per�spectives on what it means to be ethical in research 4. To develop a draft of a Health Research Ethics Checklist for community proposal re�viewers. 5. To consult communities about health research priorities in each region. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 6 Common Themes in Ethics Across the Territories Licensing Yukon From a Yukon Territorial government perspective, licensing of scientific research in the Yukon is leg�islated through the Yukon Scientists and Explorers Act, and is administered through the Heritage Branch of the Territorial Government’s Department of Tourism and Culture (2). There is no specific reference to health research in this Act. The Act includes conditions applicable to all licenses, requirements to comply with the license, handling of specimens, reference to regu�lations which may be developed, and the penalty for violating the provisions of the Act, which in�cludes the possibility of a fine of $1000 or imprisonment of six months, or both fine and impris�onment. The application for this research license includes the following elements for the description of the project: • Title of project • Confirmation of consultation with Yukon First Nation(s) in whose traditional territory the research will be conducted. Include individual(s) contacted and date of contact. Attach any letters of approval or support to the application. • Location(s) of area(s) of study (include N.T.S. map references) • Schedule and dates of field work. • Purpose and objectives of research project • Proposed research plan and methodology • Significance of proposed project • Relation of project to previous work or other work in progress. • Expected completion date (i.e. date of final report) In all cases, applications to conduct research on specific traditional Yukon First Nation lands are reviewed and approved or not by the appropriate First Nation Government or Governments. In addition, the Whitehorse General Hospital (WGH) has an Ethics Committee for clinical research activities conducted at WGH. Their Vision is “To become the leader in healthcare ethics in the Yukon”, and their Mission “recognizes and responds to issues which create ethical and moral di�lemmas and promotes discussion of these through multi-disciplinary partnerships; and promotes an ethical work environment, which integrates ethical principles and values“ (3). The Terms of Reference, Principles, Values, and Research Protocol are available upon request. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 7 Northwest Territories and Nunavut The NWT and Nunavut share the same Scientists Act. The processes for licensing a research project are outlined in the Scientists Act in Nunavut and the Northwest Territories. In addition, in the NWT there is a hospital-based ethics committee and a college-based ethics committee specifically for the nursing program. For licensing, researchers are required to fill out a license application and submit their proposal with a 1 page summary in the appropriate local language where they will be working to the territo�rial research institute. The intent at this point is to afford local stakeholders and community and territorial representatives with an opportunity to review and evaluate the proposed research study. After a defined period of time, feedback is collected and sent to the researcher at which point they are asked to make suggested changes to their plans or are granted a license by the Science Advisor to cabinet (typically, the Executive Director of the local research institute). In all regions of the North, power relationships between Indigenous communities and scientists are played out in various contexts, from environmental management, to land claims, to health re�search. Gearhard & Shirley (2007) argue that the research licensing consultation process under the Scientists Act in Nunavut has emerged as an important forum for negotiating power relationships between communities, scientists, and regulatory agencies in Nunavut (4). However, the authors highlight, communities and researchers alike are often unclear about what it entails, and in par�ticular, about the role community agencies play in the license application review and approval process. Local reviewer feedback helps to inform the Science Advisor about community concerns and potential risks/benefits of each proposed project, but the final decision to approve or reject a license application or set the terms and conditions included in the license ultimately rests with the Science Advisor alone. The Scientists Act suggests that research license applications may only be denied when the Science Advisor determines that the research will result in negative social or environmental impacts. The failure of a project to provide some desired socioeconomic benefits is not sufficient grounds for withholding a license, according to the current interpretation of the Act. Licenses may only be withheld when the Science Advisor decides there is documented, legally defensible evidence that the proposed project would have negative effects on the well-being of people or the environment. However, the Act does not make it clear how local concerns are to be written/worded or proven in order to satisfy the Science Advisor that a license should not be issued. The Research Institutes makes every effort to facilitate communication between researchers and communities aimed at resolving disputes and reaching a mutually acceptable compromise over proposed research. Clarifying research policies is one step to improving relations between scientists and communities. In addition, steps need to be taken at both policy and project levels to train researchers, educate A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 8 funding programs, mobilize institutions, and empower communities, thereby strengthening the ca�pacity of all stakeholders in northern research (4). Principles of Respect In terms of ethical health research in the North, it is important that it: • Be based on trust, traditional values, respect, honor, honesty, • Take a holistic approach to health, where the whole person is considered in the main�tenance of wellness and treatment; • Be connected to the mental, physical, spiritual, emotional and social aspects of health and well being of individuals and communities; • Consider factors such as the impacts of housing, economy, education and culture, food insecurity; • Take a broader inter-relationship approach to treating a person or maintain health and of the whole family, community • Be respectful that Knowledge is historically passed down by generations through sto�ries, songs and traditional practices. Meaningful Engagement From a Yukon First Nations’ perspective, ethics and meaningful engagement in activities related to their health and well-being are inherently linked to the settlement of specific land claims. In recent years First Nations in Canada have been engaged in developing their own research protocols, in�cluding in the Yukon. The Yukon First Nations (YFN) Heritage Group has developed a backgrounder to help First Nations communities (both self governing and non-claim settled) develop their own unique traditional knowledge polices, particularly as they relate to traditional ecological knowl�edge. The major points of the traditional knowledge policy framework are to be a guiding tool to assist First Nations in developing their own policies. For this reason, traditional knowledge and in�tellectual property rights in relation to research in the Yukon are controlled by each First Nation Government, in their development and implementation of protocols. In Nunavut, participants in community consultations held over the years have indicated very strongly that Nunavut communities continue to be ‘researched’ without appropriate consultation. They also indicated that it is in the researchers’ best interests to consult, as they will obtain more complete and accurate pictures of the phenomenon being studied. In terms of how consultation plays a role in ethics, Dickert and Sugarman (6) propose that there are ethical goals that should be in mind when a community is consulted: A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 9 • Enhanced Protection (of the community): Consultation may be a particularly effective way for investigators to work with community members to identify individuals or subgroups with particular needs or vulnerabilities that individuals outside the community may not recognize. • Enhanced Benefits (for both): Communities should be involved in identifying research ques�tions and planning studies in order to conduct studies that benefit the particular communities involved. Enhancing the benefits to ensure that research is mutually beneficial, for example – the community can advocate for additional services or training as part of engaging with the researchers. • Legitimacy (of the research): By working in partnership, a forum will emerge in which com�munity advisory members may discuss their views and concerns openly with researchers. • Shared responsibility (community-researcher): Community advisory committees can be in�volved in recruitment, endorsement, dissemination and raising awareness. Sharing of respon�sibility does not constitute the shifting of blame or removal of responsibility from investiga�tors, sponsors or institutional review boards. The degree to which responsibility can be shared is limited by the degree to which investigators and sponsors are sensitive to and ac�commodate those concerns. Appropriate research methods Health research methods are many and varied. Epidemiological methods, statistical research, qualitative and quantitative methods, and community-based participatory research. Each method�ology helps answer specific questions. Participatory Action Research (PAR) and Community-based Participatory Research (CBPR) are two research paradigms that have come about as a way to ad�dress the ethical concerns of communities that have experienced “helicopter” research in the past. In the past, researchers frequently had exclusive control of the research process and use of the re�sults. Participatory research attempts to break down the distinction between researcher and sub�jects and to build collaboration between the parties (7). Participatory research usually defines a research inquiry which involves: 1) some form of collaboration between the researchers and the researched; 2) a reciprocal process in which both parties educate one another; and 3) a focus on the production of local knowledge to improve interventions or professional practices. Community-based participatory research is a collaborative approach to research that equitably in�volves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities (Kellogg Foundation Community Health Scholars Program, 1). The process of community-based identification of issues of importance for research can be time consuming and labor intensive. In the North, the distances between communities and the many pressing issues facing communities pose challenges to this essential first step of CBPR. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 10 Although sensitivity to vulnerable participants is integral in CBPR, a different set of ethical issues may emerge that require consideration (1), such as: • Community conflict: It is often difficult to find appropriate “community representatives” who will advocate on behalf of general community concerns. Sometimes it may be important to obtain consent at a community level from respected or elected leaders. This may cause con- flict when community leaders and members disagree on the importance of a research issue. • Compensation: Given the time and effort expended by community members on CBPR teams, there may be an ethical imperative to ensure that adequate compensation exists for all team members. Unfortunately, little or no incentives are provided to either the individual respon�dent or community representatives (e.g. the host organization or health centre) to acknowl�edge the time contributed to a project. This further disempowers individuals and communi�ties by suggesting their time, energy, and resources may be of little worth, and they should participate simply because they have been invited. • Sensitive Information: Ethical issues may arise in regards to releasing or disseminating sensi�tive or unflattering data. Academic partners may feel the need to publish and stay true to the “objective” nature of the data. Community members may fear that unflattering data may stigmatize their communities. Consequently, they may request that researchers consider the potential repercussions to the community if the data are released prematurely or in an insen�sitive manner. These issues can potentially be addressed through a community research agreement, as discussed later in this report. While community-based research methods are promoted for research where the community is in�volved, research ethics boards do not always take into consideration important aspects of this methodology when assessing proposed projects. In a review of forms and guidelines from Ameri�can and Canadian research ethics boards at institutions with a public health program, Flicker, et al., (2007) found that a great proportion of the guidelines did not include evaluation of important components of a community-based participatory research project. For example, none (n = 30) que�ried community involvement in defining the research problem, asked about hiring practices, or examined what community capacity building opportunities there might be throughout the research process. Only one institution asked how unflattering data might be handled, but this had more to do with adverse events in medical research than the potentially stigmatizing results of socio�behavioural research. Only 5 institutions asked about plans for disseminating the results, and of those, none asked about procedures for terminating a study or vetoing publication based on com�munity concerns. This is very important consideration for community-based research in the territo�ries, as the licensing process in each territory is completely dependent upon ethical review con�ducted at the researcher’s academic institution. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 11 Finally, while community-based research methods have emerged as an important way to address ethical concerns of communities, they are not always an appropriate method. Other research methods are equally important when they are addressing community-led research questions or when communities are provided with an option to proceed with a community-based research ap�proach or not, as articulated in the CIHR Guidelines (9). Ownership, Control, Access and Possession (OCAP) of data The principles of OCAP (Ownership, Control, Access and Possession) are important to the ethical conduct of research involving northerners and northern Indigenous peoples. These principles have been advanced through the Assembly of First Nations (8), the National Aboriginal Health Organi�zation and others. The OCAP principles were adopted by the Council of Yukon First Nations Chiefs Leadership resolu�tion (LDR Resolution NO782./06) passed in October 2006 which stated the following: • OCAP protects communities from researchers coming in and leaving with data without sharing the information; • OCAP protects the First Nations from conclusions that are reached without considera�tion on all the context or input from First Nations; • OCAP enables First Nations partners and experts; • In the past, researchers have treated First Nations as only a source of data; • Research has been damaging in the past in instances where genetic material was used, sensitive information was published and confidential cultural information was shared inappropriately; • OCAP will enhance Yukon First Nations control and capacity and lead to more useful and reliable information that will benefit Yukon First Nation communities, enable more informed decisions and create better results; • OCAP also enhances self-determination. It is within the context of these principles that ethical research protocols have already been devel�oped by some First Nations governments in Yukon, and that will guide the development and im�plementation of these agreements now and in the future. Additionally, these protocols can include requirements for additional information and conditions. The researchers must: • Address issues that are common to all Indigenous peoples such as ownership, consent, control, access and protection of information and samples • Outline how the project will directly benefit the community • Have a detailed communications strategy A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 12 • Identify what infrastructure will be required • Identify who will own the data and where it will be stored • Identify if there will there be capacity building/training involved • Identify if there will be economic benefits for the community • Identify if there will there be samples of species taken, what will be done with them • Follow Traditional Knowledge protocols for Indigenous peoples • Include a list of partners and agencies involved • Identify what the final product will be, and that it will be in a format useful to the community • Includes knowledge of the people in the Traditional Territory/region/land area in a re�spected way. Many of these conditions can be outlined in a community-researcher research agreement. For a community-based participatory research project in Kahnawahke, Macaulay, A.C., et al, (7) devel�oped a 7-page ‘code of ethics’ document, or research agreement, that included a policy statement; principles of participatory research; the different between community-based and academic re�searchers; the obligations of researchers and the community; data ownership; the process of incor�porating new investigators; and the procedure for joint dissemination of results including dissen�sion if necessary. Inevitably, the nature of relationships and questions of ownership are complex factors that must be negotiated in each setting as need arises. Sharing knowledge and communicating results Results should be returned to the community in a format that is useful and understandable, such as through community radio, through community presentations, posters and informative pamphlets if appropriate, holding open forums and presentations in the community and/or visiting and speaking in schools, etc. Sometimes researchers have published without consulting the community, resulting in negative consequences from publications where communities had no opportunity to correct misinformation or to challenge interpretations. Macaulay, et al. (7), included a statement in their community�researcher code of ethics that read: “No partner can veto a communication. In the case of disagreement, the partner who disagrees must be invited to communicate their own interpreta�tion of the data as an addition to the main communication, be it oral or writ�ten. All partners agree to withhold information if the alternative interpretation cannot be added and distributed at the same time, providing the disagreeing partners do not unduly delay the distribution process.“ Macaulay A., et al, (7) A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 13 This type of agreement may be a way forward in dealing with such issues and encouraging the sharing of information, provided all parties agree to it. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 14 Activities Forming a Tri-territorial Advisory Committee The projects outlined in this report were guided by a tri-territorial advisory committee that was formed by the Arctic Health Research Network. The Committee has 8 representatives: 2 from each territory and 2 national representatives who have worked in the field of health research ethics in Canada’s North. The committee discussed issues related to • health research ethics review in the North; • community-research agreements; • were invited to review the health research ethics checklist for community proposal re�viewers; • shared literature, perspectives, experiences and expertise pertinent to health research ethics review in the North This committee met primarily by teleconference and email, with plans for a face-to-face meeting for the following fiscal year. A list of the members of this committee and the Terms of Reference are provided in Appendix B and C. Reviewing community, territorial and national guidelines and literature for ethical conduct of health research A number of guidelines, articles, and reports were gathered from communities, territorial and na�tional organizations and other sources to assess what resources are available for communities. A list of the literature consulted for this report is listed with the reference section of this document. Community-researcher research agreements in the territories It has become a common practice for researchers to engage a community in a research project through a community-researcher research agreement. These contracts outline the responsibilities of the community member(s) involved and the researcher for the duration of the study period. They are signed by both a community member and by the researcher. A template for a research agreement is available as an appendix in the CIHR Guidelines for the Conduct of Research with Aboriginal Peoples (9), developed by the Centre for Inuit Health and the Environment (CINE) at McGill University. Some communities have developed their own A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 15 agreements/contracts for researchers, or researchers have developed innovative ‘codes of ethics’ in partnership with a community (7). This topic is discussed further, below, in the section titled “Exploring Regional Capacity in the NWT”, however, it requires further exploration across the territories to investigate such issues as local power dynamics; who speaks for the community when negotiating such agreements; how research agreements can be developed; and others. Health Research Ethics Checklist for Community Proposal Reviewers The development of this tool was undertaken at the request of several community-based health research ethics proposal reviewers in Nunavut. The checklist is meant to be a guide in assisting community proposal reviewers to assess the ethical content of any health research project that is proposed to take place in their community. The checklist includes important questions about: • community consultation and engagement in the research project • assessing risks and benefits to the community/individual • community research agreements • sharing knowledge gained (dissemination) at the end of the project • research methods • confidentiality • conflicts of interest • advertisements and recruitment • participant withdrawal • financial or other compensation • consent forms • scientific review • other comments The checklist can also be helpful to those engaging in research review at the territorial level. The checklist has been reviewed by stakeholders in Nunavut; the AHRN Ethics Advisory Committee; the Inuit Health Research and Planning Winter Institute students (CIET Canada); and others. A draft of this checklist is provided in Appendix E. Evaluating Community Capacity for Ethical Review in the Territories The purpose of this activity was to evaluate community capacity for ethical review in the territo�ries. Capacity for ethical review takes many forms, such as: • dedicated staff to review health research proposals • community health committees A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 16 • community research committees • expert/knowledge holders in ethics and/or community development • community-developed guidelines for researchers/organizations coming to the commu�nity Given the historical context of health research in each territory, the evaluation of capacity for ethi�cal review has taken different forms in each region. In the Yukon, the focus has been primarily on training and working with the Council of Yukon First Nations; in Nunavut the focus has been pri�marily related gathering Inuit and community perspectives on ethics in order to establish what ca�pacity exists from the perspective of the community, and create a foundation on which to continue to build capacity; in the NWT the focus has been on determining regional capacity that has been developed through the various land claims settlements, and how to proceed from there. Further information on the perspectives gathered in each territory are shared below. Capacity and Training in Yukon In this fiscal year, the focus has been on some of the fundamental aspects of ethical research prac�tice that are included in the principles of both OCAP and community-based participatory research (CBPR). These fundaments aspects include developing a common understanding of the key ele�ments of Community-based Participatory Research from a Yukon First Nations perspective, and identifying health issues and actions in YFN communities that research could help to improve. Community-Based Research AHRN-YT has worked with the CYFN Health & Social Commission to identify the key elements of community-based research from their perspective. This Commission consists of the Directors of Health & Social from each of the 14 Yukon First Nations. These key elements include that community-based research: • Is driven by community priorities; • Includes community members in all stages; • Adheres to local FN and Territorial Governments protocols; • Upholds the principles of OCAP; • Occurs in a holistic context; • Results benefit the community (data and funding); • Influences community/FN Gov. health policies; • Includes a strong communication plan. (CYFN Health Comm. Minutes, Feb. 07) Training Course A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 17 An opportunity to develop and deliver a capacity building training course was presented to the CYFN Health Commission in October 2006, who then requested that it be implemented. After several months of collaborative work by CYFN, Yukon College, the Centre for Health Promotion at the University of Toronto, and AHRN-YT, the course entitled Yukon First Nations Health Promotion Spring School was delivered in May 2007. The course was facilitated by Dr. Suzanne Jackson, the Director of the Centre for Health Promotion at the University of Toronto, and took participants through a six step process of planning a community health promotion intervention. Twenty-three Yukon First Nations health resource workers from across the Yukon self-selected into a group exam�ining one of the top 5 priority health issues described in AHRN community consultations, and worked through the six step process with health resource workers from other communities. The outcomes from this training course provide community-based recommendations for actions, including research, on issues identified as priorities at the community level, thereby contributing importantly to the foundations of both OCAP and CBPR that research be focused on issues of im�portance to communities. In the coming year, AHRN-YT will continue to work to further understand community-based health research priorities through ongoing consultations, and develop further capacity building opportuni�ties at the community level. Gathering Inuit and community perspectives on ethics in Nunavut As described in an earlier section, the licensing process in Nunavut is the singular process or re�viewing and providing feedback on health research projects, unless the researcher conducts con�sultations with the community in advance. The license is reviewed by Nunavut Tunngavik Inc., the Research Committee of the Dept. of Health and Social Services, the municipal council of the community involved, and other stakeholders as the topic requires. One of the concerns related to this process is that very often community members or the local municipal council either do not have adequate resources to evaluate the license or the time to do so given other obligations. In ad�dition, due to the high turnover of staff in Nunavut, there are not always enough human resources at the various government and territorial organizations to ensure timely and thorough review of licensing applications. Nunavut Ethics Workshop Before the release of the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples (9), the document underwent widespread consultation across Canada. Agencies in every Canadian province and territory were consulted about the document – except for Nunavut. In or�der to engage in a dialogue on ethical health research practices on more even footing, it was im�perative that community members be invited to have their say on ethical conduct of health re�A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 18 search in Nunavut. Evaluating capacity in Nunavut begins with discussions on what it means to be ethical from an Inuit and community perspective. For this reason, Qaujigiartiit/AHRN-Nunavut has conducted two consultations on health research ethics: 1) in Iqaluit, NU in 2006 on the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples and 2) in Rankin Inlet, NU in 2007 to continue the dialogue on Inuit and community perspectives on health research ethics (14-16). Information from this meeting in provided in Appendix D. The perspectives shared at these meetings primarily related to community values and respecting their role in ethics evaluation. Participants felt that it was unethical for researchers to not make ef�forts to build trusting relationships with community members and/or to reduce the power differen�tial between researchers and community members through training, dialogue and other means. Participants at our workshop highlighted several important themes in community-based research they felt were not only methodological considerations that they would like to see enhanced, but ethical considerations from the perspective of the community: • Respect for the community • Trust and building relationships • Use of appropriate research methods • Equality, equity and power • Ownership of data (including samples) • Sharing of knowledge gained from research • Information about research processes These feelings underscore a comment made by Martha Flaherty (past President, Pauktuutit Inuit Women’s Association) at a workshop in Inuvik in 1995 held to bring researchers, organizations and community representatives together to discuss issues of health research ethics: “Real participatory research must include Inuit control over the identification of areas and issues where research is needed and the design and delivery of the methodology. Inuit would participate in the collection and analysis of data and have equal control over the dissemination of the information and research findings. In my view, anything less is not participatory and it is unfair to call it such.” - Martha Flaherty, 1995 (10) During discussions, ‘Inuit ethics’ were discussed by our participants and it is important to note that participants requested more dialogue with elders in future discussions about ethics in Nunavut, which Qaujigiartiit/AHRN-NU will make every effort to support. Research, Respect and Building Capacity: Negotiating relationships and working together A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 19 Participants in the Nunavut workshops highlighted the importance of respect and partnership be�tween researchers and communities in northern research. They felt that spending time to develop relationships relieves stress for both researchers and community and creates a pleasant environ�ment in which to work. Participants made suggestions they felt would help facilitate a participatory process: • consulting community members, especially elders, in addition to community leaders • researching a topic of importance to the community • including community members in the conduct of the research by hiring local knowl�edge holders or training local research assistants • providing local training opportunities when appropriate They also highlighted that communities need to be more aware of their rights to make requests of researchers and negotiate the terms of the research being conducted in their community. Partici�pants noted that by working in partnership, researchers and community members can get to know each other, share worldviews and exchange knowledge in a meaningful and respectful way. Improving participatory relationships has also been discussed quite extensively in the literature (1- 7, 9-13)). Kaufert et al, (10) describe discussions at a meeting in Inuvik in 1995 where the mem�bers of the research community and members of the Canadian Indigenous community met to dis�cuss health research ethics and communities. At this meeting, all parties agreed to focus on the importance of developing a more participatory process and that both sides would work together to: • define research problems and obtain funding • train and involve community members in data collection • ensure the participation of community members and organizations in the analysis and interpretation of research findings • develop joint control over the dissemination of results Since that time, some progress has been made, particularly with the publication of the CIHR Guidelines for the Conduct of Health Research With Aboriginal Peoples (9). In addition, the Nuna�vut Research Institute and Inuit Tapiriit Kanatami have recently revised and published a document entitled Negotiating Research Relationships with Inuit Communities: A Guide for Researchers (17). This progress is exciting and encouraging, and we hope to foster its continuation. Information about research processes Participants in the Nunavut workshops indicated that community members need more information about the research process in Nunavut, including how projects are licensed; who in the communi�ties and territory are consulted during the development of the research project and during licens�ing; and how to increase community involvement in the research process from start to finish. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 20 In order to continue to build capacity for ethical review in Nunavut, communities need to be well informed of their rights, their opportunities to have input on projects proposed to take place in their communities, and key ethical considerations for the conduct of research in their communi�ties. It is hoped that improvements will be made over time with increased opportunities to build northern capacity for ethical review, including those provided by Qaujigiartiit/Arctic Health Re�search Network - Nunavut. Exploring regional capacity in the NWT In the NWT, community contacts were identified and contacted to share information on health re�search being conducted in their communities. As noted in the previous section, the distinction should be made between the ability to provide knowledge and the capacity to participate in ethi�cal review. Many communities participate in other types of research, particularly when the re�search is related to the natural environment. Communities have very little capacity to participate in formal ethics review as they rarely have dedicated staff or health committees in the community to review licenses, to contribute comprehensive feedback to the ethical review portion of applica�tions, and many have not formally documented their health research priorities. Some communities have their own traditional knowledge, protocol and methodology for knowledge exchange, and one example of a community protocol for such activities is set out below. The following is a brief, and by no means comprehensive, region by region overview of capacity to participate ethical review of research activities, usually initiated outside of the “community”. For the purposes of the information set out below, “community” is the community at large, the local government(s) or a regional body. Both the Gwich’in and Inuvialuit have regional organizations that have staff members to work on through the Aurora Research Institute (ARI). In the past, community researchers have hired and trained local community members, and have put in place research agreements, generally based on the Centre for Indigenous Peoples’ Nutrition and Environment (CINE) research agreements (pro�vided in the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples (9)). The community of Inuvik does have a hospital-based ethics committee and is also the home of the Aurora Research Institute (ARI). The proximity of the ARI and the fact that both the Gwich’in and Inuvialuit regional organizations have established health departments in this community, may be the reason that a greater regional capacity for input in the ethical review of licenses for health re�search may exist here. NWT Ethics Workshop An ethics workshop was held in February 2008 with participants and stakeholders from across the NWT. As noted earlier, the current practice for ethical review is to invite participants from a region A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 21 if the license application is proposed to take place within that region. Materials were reviewed and discussion centred on gaps and needs in the NWT in relation to ethical review, particularly for communities outside of Yellowknife. It was noted that there is very few case examples in ethics literature, particularly in the area of protocols, oral traditions and the relationship between human research and land and environment. Often, Aboriginal Peoples have a different “world view” of health in that the definition of “health” is far broader than what is normally thought of in western research. There has been much discussion over the years about ensuring community involvement in re�search and ethical review. Participants in the NWT ethics workshop agreed that forming a Steering Committee for ethics review in the NWT is timely. A Terms of Reference can be developed, recog�nizing that capacity development in communities is needed. The membership ought to be very broad, ensuring representation from all regions, governance organizations and health boards. Recommendations for Ethical Review The responsibility for ethical review in health research is usually assigned to university-based hu�man subjects committees. As noted earlier, this is particularly the case in the North, as an ethical review is not conducted in any of the three territories – the licensing process, described earlier, is completely dependent upon university-based ethical review boards. The university-based commit�tees usually do not have first-hand knowledge of local conditions, local needs or priorities, which can reduce the effectiveness of their review in a northern context. It has been noted in the litera�ture (1,10) that central scientific and ethical review processes have limited capacity to assess po�tential local relevance of the research product. It has been proposed that the central criteria for as�sessing the distribution of risks and benefits should be “whose interest does the research serve” (10. A concern in relation to reliance on non-northern-based ethical review committees (REBs) was their lack of local knowledge base, which limited their capacity to judge whether the process used to obtain community consent and participation was meaningful in local terms (10). Given the information gathered from the literature, and experiences gathered from consultations within the Arctic Health Research Network in the 3 territories, recommendations for the content of ethical review include: • Community-based Participatory Research Training • Documentation of Processes • Nature of Informed Consent • Community Consultation • Research Agreements A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 22 There is currently no ethical review process based in the three territories, therefore these recom�mendations are for institutions involved in ethical review of research in the North, and to be con�sidered when a research ethics review board is developed in the North. CBPR Training Research Ethics Boards engaged in reviewing Community-based Participatory Research (CBPR), and other community-based research proposals, should be provided with basic training in the principles of CBPR (1). Documentation of Processes Research Ethics Boards should require CBPR projects to document the process by which key deci�sions regarding research design were made and how communities most affected were consulted (1). Nature of Informed Consent Research Ethics Boards should consider the nature of the community involved in the research pro�ject and whether the method of consent (language, written vs. oral, etc.) is appropriate. It has been suggested that if participants are to have access to full information, then all objectives and options, including non-participation, “had to be presented in an accessible format; including oral presenta�tion in community forums, videotapes and documentation printed in Aboriginal languages” (10). The requirements for valid consent agreements usually include: (a) demonstration of subject com�petence; (b) communication of full information on risks and benefits; (c) assurance that the subject comprehended the information; (d) guarantees that the individual is able to act independently (Freeman, 1994, cited in Flicker, 2007). Consent agreements may need to use alternative media formats including video clips, community meetings, and community radio. Community Consultation Research Ethics Boards should consider the amount of time that has been spent consulting with the community, and if the partnerships formed are meaningful, i.e. described in detail in the context of the community and its leadership. Research Agreements Research Ethics Boards should mandate that CBPR projects seeking ethical review provide signed terms of reference, memoranda of understanding, and/or community research agreements. These should clearly outline the goals of the project, principles of partnership with the community, decision-making processes, roles and responsibilities of partners, and guidelines for how partner�ship will handle and disseminate data. (1) A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 23 Finally, Ruttan’s statement (2004) emulates the findings of the Arctic Health Research Network in that: An ethic based in mutual respect, reciprocal collaborative exchange, and an awareness of the personal, political and cultural consequences, particularly in light of past relationships, should guide our actions. - Ruttan, 2004 (11) The discussion of community ethics and ethical review will be on-going and continue within the work of the Arctic Health Research Network. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 24 Conclusion Communities in the north have an interest in participating in health research to better understand risk factors, diseases and illness in their communities. There is a strong desire to prioritize and re�search health issues that are important to communities. Ethics and ethical review has emerged as an important issue in northern health research and the Arctic Health Research Network is working to address it with northern communities. While research operations and legislation in each territory are different, there are a number of cross-cutting issues related to health research ethics in the territories, such as the historical context of past research; licensing processes; appropriate research methods; meaningful community en�gagement; capacity for engaging in ethical review; and sharing of knowledge gathered from re�search with northern communities. In addition, the paucity of available human and financial re�sources to meaningfully engage in ethical review in the territories also poses a barrier. A Way Forward The CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples is emerging as a gold standard in health research ethics in Canada, and is a useful guide and tool to help communi�ties understand and negotiate their ethical rights when engaging in research relationships. It is our hope that the information shared in this paper will lay the foundation for on-going work in ethics in the territories. We hope that this paper has contributed to efforts to build capacity for northern health research by sharing some of the concerns of communities, and by examining some of the processes that may be maximized to help empower communities who wish to engage in re�search relationships. In on-going work, we hope to develop resources, such as the checklist shared in this report, for communities that will further enable them to engage meaningfully in health re�search relationships. We look forward to working together with all Canadian and Northern agencies continue to share and address the concerns of communities, and new insights that further growth and experience will provide. The Arctic Health Research Network The Arctic Health Research Network (AHRN) is a community driven, northern lead, health and wellness research network that will continue to facilitate the identification of health research pri�orities in the three territories. AHRN centres in each territory will continue to conduct consulta�tions and workshops as a part of its mandate to improve health outcomes through research. This will require financial support for projects, as well as long-term, sustainable funding which the or�ganization is currently seeking. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 25 Acknowledgments The work conducted for this report was made possible by a grant from the Tr-Territorial Health Ac�cess Fund. This report outlines the first year of work in a 3-year agreement. This report would not have been possible without the time and investment of community members across the territories; the members of the Arctic Health Research Network Ethics Advisory Commit�tee; and the support of our Board members in each region. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 26 References 1. Flicker, S., Travers, R., Guta, A., McDonald, S. & Meagher, A. (2007). Ethical dilemmas in community-based participatory research: Recommendations for institutional review boards. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 84(4): 478-489 2. 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American Journal of Public Health, 98(1): Deh Cho First Nation (2007) Deh Cho First Nation Traditional Knowledge Research Protocol. Final Draft re�ceived May 2007, Northwest Territories, Canada. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 29 Dicert, N. Sugarman, J. (2005). Ethical goals of community consultation in Research. Health and Policy Eth�ics (95(7): 1123-27). Edwards, K., Mitchell, S., Martin, C.Z., Gibson, N., & Andersson, N. (2007). Community-coordinated re�search as HIV/AIDS prevention strategy in Northern Canada communities. Unpublished manuscript. Ermine, W., Sinclair, R., & Jeffrey, B. (2004). The ethics of research involving Indigenous Peoples: a report of the Indigenous Peoples' Health Research Cenre to the Interagency Panel on Research Ethics. Indigenous Peoples Health Research Centre: Saskatoon, Canada First Nations Centre, National Aboriginal Health Organization (2003). Ethics Toolkit. NAHO: Ottawa, Can�ada. First Nations Centre, National Aboriginal Health Organization (2003). Research Toolkit: Understanding Re�search. NAHO: Ottawa, Canada. Flicker, S., Travers, R., Guta, A., McDonald, S. & Meagher, A. (2007). Ethical dilemmas in community-based participatory research: Recommendations for institutional review boards. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 84(4): 478-489. Gearheard, S., & Shirley, J. (2007). Challenges in Community-Research Relationships: Learning from Natural Science in Nunavut. Arctic 60(1): 62-74. Glass, K., Kaufert, J. (2007). Research Ethics Review and Aboriginal Community Values: Can the two be rec�onciled? Journal of Empirical Research on Human Research Ethics, 25-40. Glass, K., Kaufert, J. (1999). Research involving aboriginal individuals and communities: Genetics as a focus. Proceedings of a workshop of the consent committee National Council of Ethics in Human Research. Hart, M. (2007). Indigenous knowledge and research: The mikiwahp as a symbol for reclaiming our knowl�edge and ways of knowing. First Peoples Child and Family Review 3(1): 83-90. Health Research North of 60 Workshop Final Report, October 1989 Henderson, R., Simmons, D.S., Bourke, L., & Muir, J. (2002). Development of guidelines for non-Indigenous people undertaking research among the Indigenous population of north-east Victoria (Australia). Medical Journal of Australia (176): 482-485. Indian and Northern Affairs Canada (INAC) (1996). Report of the Royal Commission on Aboriginal Peoples: Ethical Guidelines for Research; Volume 5 Renewal: A twenty-year commitment, Appendix E. Government of Canada: Ottawa, Canada. Kahnawake Schools Diabetes Prevention Project, Code of Research Ethics (2007). Kahnawake Schools Dia�betes Project, Kahnawá:ke, Quebec; www.ksdpp.org. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 30 Kaufert, J., Commanda, B., Elias, B., Grey, R., Masuzumi, B., & Young, T.K. (2001). Community Participation in Health Research Ethics, chapter in Pushing the Margins: Native and Northern Studies (Oakes J, Riewe, R. Bennett, M. & Chisolm, B. (Eds)). Department of Native Studies: Native Studies Press: Winnipeg, Canada. Kaufert, J., Commanda, B., Elias, B., Grey, R., Young, T.K., & Masuzumi, B. (2002). Evolving participation of aboriginal communities in health research ethics review: the impact of the Inuvik workshop. International Journal of Circumpolar Health 58: 134-44. Kaufert, J. & Kaufert, P.L. (1996). Ethical issues in community health research: Implications for First Nations and Circumpolar Indigenous Peoples. Circumpolar Health: 33-37. Leadbeater, B., Banister, E., Benoit, C., Jansson, M., Marshall, A., & Riecken, T. (2006). Ethical Issues in Community-based Research with Children and Youth. University of Toronto Press: Toronto, Canada Liamputtong, P. & Gardner, H. (Eds) (2003). Health, Social Change and Communities. Oxford University Press: Victoria, Australia. Macaulay, A.C., Cross, E.J., Delormier, T., Potvin, L.P., Paradis, McComber, A.M. (1996). Developing a code of research ethics for researc with a native community in Canada: A report from the Kahnawake Schools Diabetes Prevention Project. Circumpolar Health pp 38-40. Macaulay, A.C., Delormier, T., McComber, A.M., Cross, E.J., Potvin, L.P., Paradis, G., Kirby, R.L., Saad�Hadda, C., & Desrosiers, S. (1998). Participatory Research with Native community of Kahnawake creates innovative code of research ethics. Canadian Journal of Public Health 89(2): 105-108. Macaulay, A.C., Gibson, N., Freeman, W. L., Commanda, L.E., McCabe, M.L., Robbins, C.M., & Twohig, P.L. (2001). The community's voice in research. Canadian Medical Association Journal 164(12): 1661. Medical Research Council of Canada; Government of Canada (2003). Tri-Council Policy Statement: Ethical conduct for research involving humans. Government of Canada: Ottawa, Canada. Mi’kmaq College Institute (2000). Research Principles and Protocols, Mi’kmaw Ethics Watch. National Aboriginal Health Organization (2005). Privacy Tool Kit: The Nuts and Bolts of Privacy. NAHO: Ottawa, Canada. National Aboriginal Health Organization (2006). First Nations Conceptual Frameworks and Applied Models on Ethics, Privacy and Consent in Health Research and Information. NAHO: Ottawa, Canada National Health and Medical Research Council (Australia) (1991). Guidelines on Ethical Matters in Aborigi�nal and Torres Strait Islander Health Research. National Health and Medical Research Council: Brisbane, Australia Nunatsiavut Government (2006). Interim Research Process. Nunatsiavut Government: Goose Bay, Canada. Ruttan, L. (2004). Exploring ethical principles in the context of research relationships. Pimatisiwin: A journal of Aboriginal and Indigenous Community Health 2(1): 11-28. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 31 Saskatoon Aboriginal Women's Health Research Committee (2004). Ethical Guidelines for Aboriginal Women's Health Research. Prairie Women's Health Centre of Excellence: Saskatoon, Canada. Savulescu, J. (2002). Two deaths and two lessons: Is it time to review the structure and function of research ethics committees? Journal of Medical Ethics 28:1-2. Trimble, J.E., & Fisher, C.B. (2006). The Handbook of Ethical Research with Ethnocultural Populations and Communities. Sage Publications: Thousands Oaks, Calfornia, USA. Verhoff, S. (2002). Participatory Art Research: transcending barriers and creating knowledge and connection with young Inuit adults. American Behavioural Scientist 45 (8): 1273-1287. Weber-Pillwax, C. (2004). Indigenous researchers and Indigenous research methods: Cultural influences of cultural determinants of research methods. Pimatisiwin: A journal of Aboriginal and Indigenous Community Health 2(1): 77-90. Whitehorse General Hospital (2007). Ethics Committee Terms of Reference. WGH: Whitehorse, Canada. Whitehorse General Hospital (2004). Protocol on Research and Other Studies Involving Human Subjects. WGH: Whitehorse, Canada. Whitehorse General Hospital (2007). Research Policy. WGH: Whitehorse, Canada. World Health Organization and Centre for Indigenous Nutrition and the Environment (2003). Indigenous Peoples and Participatory Health Research; Planning and Management/Preparing Research Agreements. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 32 Appendix A – AHRN Tri-territorial Ethics Advisory Commit�tee Marilyn Van Bibber (Yukon Representative) Chairperson Inter Tribal Health Authority, Research Secretariat Victoria, BC Christiane Boisjoly (Yukon Representative) Chairperson Arctic Health Research Network – Yukon Whitehorse, Yukon Jane Modeste (NWT Representative) North Slavey First Nation Yellowknife, NT Sue Heron-Herbert (NWT Representative) Projects Coordinator Arctic Health Research Network – NWT Yellowknife, NWT Janet Tamalik McGrath (Nunavut Representative) PhD Candidate University of Ottaawa Gwen Healey (Nunavut Representative) Executive Director Qaujigiartiit/Arctic Health Research Network – Nunavut Iqaluit, NU Laura Arbour (National Representative) Paedeatrician/Geneticist Vancouver Island Health Authority Victoria, BC Nancy Gibson (National Representative) CIET Canada Edmonton, AB A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 33 Appendix B – Terms of Reference for AHRN Ethics Advisory Committee Terms of Reference – AHRN Ethics Advisory Committee 1. Committee Name: Arctic Health Research Network Ethics Advisory Committee 2. Date Created: July 2007 3. Contact Information: Gwen Healey Arctic Health Research Network (Nunavut) Building 1079 PO Box 11372 Iqaluit, NU 867 975 5933 ahrn.nunavut@gmail.com 4. Committee Members: Representatives to the committee should have considerable knowledge in the field of ethics, par�ticularly as relates to northern and/or indigenous peoples. Representatives from: Yukon – Lori Duncan Marilyn Van Bibber NWT - Cindy Orlaw Jane Modeste Nunavut - Janet McGrath Gwen Healey National - Nancy Gibson Laura Arbour 5. Current Chair: Gwen Healey A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 34 6. Chair selection and Term: 7. Committee Goals: AHRN Vision: The Arctic Health Research Network is working towards having people and facilities in place in northern communities to facilitate and conduct community-driven health research and raise awareness about health and wellness. Goal of Committee Provide advice, capacity and support to the Arctic Health Research Network for the purposes of developing a tri-territory strategy for Ethical Review for health research involving northerners and northern Indigenous peoples. 8. Committee roles & responsibilities: The committee will provide guidance to the Arctic Health Research Network initiatives undertaken within the scope of this project from 2007-2010 in the following ways: Participation in teleconference calls to discuss different aspects of the projects. The conference calls will be held approximately once a month or as needed. Attendance at one face-to-face meeting per year where progress made on the project will be pre�sented and discussed in further detail. Committee members may be called upon to review documents or materials produced via this pro�ject to provide input. 9. Communication The Committee will meet in person once per year, if possible. Meetings of the committee will primarily be conducted by monthly teleconference calls, or calls as needed. The majority of correspondence between calls will be conducted by email. The meetings will be coordinated by the AHRN Ethics Project Coordinator who will also provide notice to the Committee of upcoming meetings. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 35 Appendix C - Inuit and community perspectives on ethics in Nunavut INUIT AND COMMUNITY PERSPECTIVES ON ETHICS AND HEALTH RESEARCH Ethics Participants were given a short presentation on ethics in research and learned about five principles of ethical research: • beneficence (doing good, ensuring the research will have a benefit, • non-maleficence (doing no harm) • autonomy (the right to refuse participation) • dignity (treating participants with dignity) • truthfulness and honesty (about the nature of the research) Participants also received short fact sheets developed by Qaujigiartiit/AHRN-NU on the CIHR Guidelines for the Conduct of Health Research with Aboriginal Peoples. During discussions, ‘Inuit ethics’ were discussed by participants and it is important to note that participants requested more dialogue with elders in future discussions about ethics in Nunavut. The information participants shared in this meeting will be used to inform the development of a Qaujigiartiit/AHRN-NU Ethics Checklist for communities to use when reviewing health research proposals. Recommendations for researchers: The participants at this workshop added the following recommendations for researchers coming to Nunavut: • Researchers should consult with the community (about research questions, health top�ics, finding assistants, etc.), and especially elders when there is an opportunity • Researchers should provide training opportunities when they are in communities, by: • Including community members in the research through consultation with local knowledge holders or hiring local research assistants A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 36 • Holding open forums and presentations in the community and/or visiting and speaking in schools. • Results should be returned to the community in a format that is useful and understand�able, such as through community radio, through community presentations, posters and informative pamphlets if appropriate, etc.. Community Criteria for Research in Nunavut Participants identified important criteria for what they would like see included as a part of their vision for health research in Nunavut. Equality • Community research assistants receiving credit for their contributions • Equal treatment of researchers and community knowledge holders Trust • Consultation with communities before the start of projects Results and knowledge sharing • Research results shared with and presented back to community members in a format that is visible and understandable • plain language reports; • in-school presentations; • talks on the radio, etc. Ethics • Territorial-level ethics review that incorporates Inuit ethics Community comes first • Researching a topic of importance to the community • Community members conducting the research • Researchers and community members sharing worldviews and getting to know each other • Working in partnership with the community to relieve stress for both the researchers and the community Participatory Action Research (PAR) A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 37 • Research method that promotes • Equality in relationships • The sharing of personal stories • Pride in and ownership of what is learned/discovered A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 38 Appendix D – Community proposal reviewer checklist (Draft) Reviewer Health Research Ethics Checklist The purpose of this checklist is to provide a guide for the reviewer as to the kinds of ethical issues you should think about when reviewing a proposal for health research in Nunavut. Community Engagement: Has there been any consultation with the community before the submission of the proposal? If so, what kind and with whom? Are there community partners (individuals, organizations, advisory groups, etc.)) involved in the project? Are community members involved in collecting information or guiding the project? How will community members be acknowledged for their contributions? Will it be in the form of publication credits, remuneration (payment), or some other way? Is this adequate/ fair? Community research agreement: Has a community research agreement been proposed? If so, who will represent the commu�nity to sign it? Research Methods: Are research data management methods appropriate? length of time sensitive methodology ensuring confidentiality security and storage of files and data data access issues once the study is complete Risks and Benefits: Are there risks associated with this project? If so, are they clear? Do they effect a person or the community (or both or neither)? Are there benefits associated with this project? If so, are they clear? A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 39 Advertisements and Recruitment: Are there advertisements to recruit participants or advertise the study? Are they appropriate? Confidentiality: Are the confidentiality protections appropriate? For example, what steps have they taken to make sure confidentiality will be maintained, and given the small populations of northern communities, are they adequate for the North? How do they propose to handle negative or sensitive results? Is this adequate/fair for the community? Participant Withdrawal: Are there appropriate mechanisms for participants to withdraw from the study? Financial or Other Compensation: Is there compensation to participants? Is it appropriate to their time and effort? Is it coercive (does it influence them to participate when normally they wouldn’t)? Do they propose dollar amounts of compensation to participants? If so, is this acceptable? What is the funding source? Will the funding source want rights over data or publication? Consent forms: Are they consistent with protocol? Is there a draft consent form submitted? Is the language (language and reading level) appropriate for participant population? Does it include a waiver of legal rights? Is the method of obtaining consent appropriate? Will it explained properly (i.e. by a person or through a video?) Sharing Knowledge: Is there a clear explanation of how the research results will be shared with the community? Is it in a form that community members will understand? Conflict of Interest: Are there any conflicts of interest (including with funders or with participants)? A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 40 Have they been appropriately managed? Scientific Review: Are the Hypothesis/research questions appropriate for the region? Are the recruitment/sampling strategies appropriate? Are the study numbers justified? Has there been a scientific review and/or ethical review by the proponent’s university, or�ganization, or any other northern body? Any other reviewer comments: Date & signature of primary reviewer A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 41 Appendix E - Whitehorse General Hospital Research Proto�col (Summary) Research and Other Studies Involving Human Subjects SCOPE Describes the policy and procedures for approval of research and other studies involving hu�man subjects. POLICY All research and proposals and/or projects involving human subjects must adhere to the Whitehorse General Hospital’s (WGH) established Protocol on Research and Other Studies Involving Human Subjects. The WGH complies with the Tri-Council Policy Statement “ Ethical Conduct for Research Involving Humans” (1998). BACKGROUND WGH supports research though the organization by recognizing the potential benefits that research provides to patient care and towards continuous quality improvement. WGH also promotes the ethical conduct of research involving human subjects. DEFINITIONS Research Research refers to the class of activities designed to develop or contribute to generalizable knowledge. Generalizable knowledge consists of theories, principles or relationships, or the accumulation of information on which they are based, that can be collaborated by accepted scientific methods of observation and inference. (Tri- Council, 1996, 104) Research Ethics Research Ethics is devoted to the systematic analysis of ethical and legal questions to ensure that study subjects are protected and that the ethical research is conducted in such a way that it serves the needs of the subjects, as well as society as a whole. PROCEDURES/ GUIDELINES All submissions must comply with the Whitehorse General Hospital Protocol on Research and Other Studies Involving Human Subjects. All research proposals relating to the hospital, must be submitted to the WGH Ethics Com�mittee for discussion and comments. Note: the WGH Ethics Committee may request the proposal be reviewed and approved by a Canadian university-based or hospital-based Ethics Committee. REFERENCES A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 42 1. Association of Canadian Universities for Northern Studies; Ethical Principles for the Conduct of Research in the North; (1998); www.cyberus.ca/~acuns/EN/n_res_02.html 2. Canadian Institute of Health Research (CIHR) website; www.cihr.org/ 3. Canadian Medical Association; Canadian Bioethics Report; (August 2000) www.cma.ca/cbr/ 4. Indian and Northern Affairs Canada; Report of the Royal Commission on Aboriginal Peoples – Ap�pendix E: Ethical Guidelines for Research; (August 1991). 5. Medical Research Council of Canada, Natural Sciences and Engineering Research Council of Can�ada, Social Sciences and Humanities Research Council of Canada; Tri-Council Policy Statement Ethical Conduct for Research Involving Humans; (August 1988) http://www.pdacortex.com/TCPS_Download.htm 6. National Institutes of Health website; (last updated 02/19/04); www.nih.gov/ 7. National Sciences & Engineering Research Council (NSERC) website; www.nserc.ca/ 8. Richmond Health Services; Vancouver / Richmond Health Board Draft Research Protocol; (October 23, 2000). 9. Stanton Regional Hospital; Stanton Regional Hospital Ethics Committee Research Policy and Pro�cedure; Yellowknife, Northwest Territory. 10. The National Commission for the Protection of Human Subjects of Biomedical and Behaviour Re�search; The Belmont Report Ethical Principles and Guidelines for the Protection of Human Sub�jects of Research (April 18, 1979); http://ohsr.od.nih.gov/mpa/belmont.php3 11. University of British Columbia; Policy # 87: Research; (March 1995) www.universitycounsel.ubc.ca/policies/ 12. University of Calgary; Ethics Handbook: A Guide for Human Research Ethics and Review; Faculty of Kinesiology; (September 2001) 13. University of Calgary; University Policy and Procedures Ethics in Human Research; (November 16, 2000); www.ucalgary.ca/uofc/research 14. Weizer, C; Dickens, B and Meslin, E (1997) Bioethics for Clinicians: 10 Research Ethics. CMAJ 156: 1153-7 15. Whitehorse General Hospital Policy Manual; Conflict of Interest HR-80 ; (April 1994). 16. Whitehorse General Hospital Policy Manual; Consent Policy LI-20; (July 1999). 17. Whitehorse General Hospital Policy Manual; Pledge of Confidentiality Hrpledge240801 18. Whitehorse General Hospital; WGH Ethics Steering Committee Report; (September 10, 2002). 1. Association of Canadian Universities for Northern Studies; Ethical Principles for the Conduct of Research in the North; (1998); www.cyberus.ca/~acuns/EN/n_res_02.html 2. Canadian Institute of Health Research (CIHR) website; www.cihr.org/ 3. Canadian Medical Association; Canadian Bioethics Report; (August 2000) www.cma.ca/cbr/ 4. Indian and Northern Affairs Canada; Report of the Royal Commission on Aboriginal Peoples – Ap�pendix E: Ethical Guidelines for Research; (August 1991). 5. Medical Research Council of Canada, Natural Sciences and Engineering Research Council of Can�ada, Social Sciences and Humanities Research Council of Canada; Tri-Council Policy Statement Ethical Conduct for Research Involving Humans; (August 1988) http://www.pdacortex.com/TCPS_Download.htm 6. National Institutes of Health website; (last updated 02/19/04); www.nih.gov/ 7. National Sciences & Engineering Research Council (NSERC) website; www.nserc.ca/ 8. Richmond Health Services; Vancouver / Richmond Health Board Draft Research Protocol; (October 23, 2000). 9. Stanton Regional Hospital; Stanton Regional Hospital Ethics Committee Research Policy and Pro�cedure; Yellowknife, Northwest Territory. 10. The National Commission for the Protection of Human Subjects of Biomedical and Behaviour Re�search; The Belmont Report Ethical Principles and Guidelines for the Protection of Human Sub�jects of Research (April 18, 1979); http://ohsr.od.nih.gov/mpa/belmont.php3 11. University of British Columbia; Policy # 87: Research; (March 1995) www.universitycounsel.ubc.ca/policies/ 12. University of Calgary; Ethics Handbook: A Guide for Human Research Ethics and Review; Faculty of Kinesiology; (September 2001) 13. University of Calgary; University Policy and Procedures Ethics in Human Research; (November 16, 2000); www.ucalgary.ca/uofc/research 14. Weizer, C; Dickens, B and Meslin, E (1997) Bioethics for Clinicians: 10 Research Ethics. CMAJ 156: 1153-7 15. Whitehorse General Hospital Policy Manual; Conflict of Interest HR-80 ; (April 1994). 16. Whitehorse General Hospital Policy Manual; Consent Policy LI-20; (July 1999). 17. Whitehorse General Hospital Policy Manual; Pledge of Confidentiality Hrpledge240801 18. Whitehorse General Hospital; WGH Ethics Steering Committee Report; (September 10, 2002). A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 43 Appendix F - Deh Cho First Nation Traditional Knowledge Research Protocol The Elders of the region have developed a draft Traditional Knowledge Research Protocol, to be used for various types of research. The draft was developed using various other documents, includ�ing the Sambaa K’e Dene Band’s Policy Regarding the Gathering, Use and Distribution of Tradi�tional Knowledge, the ACUNS Ethical Principles for the Conduct of Research in the North, the West Kitikmeot Slave Study, the Gwich’in Tribal Council’s Traditional Knowledge Policy and the Deh Cho Land Use Planning Committee’s Traditional Knowledge Policy. There appears to have been comprehensive consultation of leadership, Elders, staff, membership and other interested par�ties and individuals, so is likely to be used in any project that involves traditional knowledge. The draft says: “The Deh Cho First Nation(s) have the exclusive rights and interests in con�tinuing their documentation of traditional knowledge information and recog�nize that written, verbal and visual documentation of Traditional Knowledge are important tools by which knowledge can be stored, displayed and ana�lyzed to assist in land and resource decision-making.” Although the Protocol appears to relate specifically to land and resources, an Elder who was in�strumental in getting this document prepared said it would also apply to medical research. The Protocol sets out guidelines for communities that include: • Stewardship: Deh Cho First Nations collectively share stewardship and full rights over the gathering, use, distribution and storage of Traditional Knowledge; • Gathering and Use: informed consent requires the Deh Cho communities receive writ�ten requests that detail the nature of the request, the reason for the request and how the information is to be used and also requires that outside parties adhere to commu�nity policies. All requests that are granted would be subject to written confidentiality agreements that contain limited use and distribution clauses; • Distribution and Storage: members retain anonymity unless otherwise agree in writing, all research studies must be summarized in plain language and on audiotape in Slavey, final reports are to be approved by the respective Deh Cho community before being released and copies are to be kept, stored and managed by the Deh Cho First Nation(s) A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 44 and training and/or employment opportunities shall be offered to community members so that they can participate in the research; • Benefits: Fair compensation must be provided to individuals who participate in studies and research and share traditional knowledge. The Protocol is clear that compensation is only for participation and not for the purchase of any information; • Employment Opportunities: this section recognizes that community members may be directly employed with research or development initiatives because of their knowledge and expertise, but that cannot be used to represent the collective traditional knowl�edge of the Deh Cho people, nor can they represent the Deh Cho First Nation(s). There are also guidelines for Researchers – they must abide by any Dene laws, regulations, cus�toms or protocol in place in the region. No research is to begin until a signed, community�approved research agreement has been obtained and informed consent of individuals who may be affected is given. The research should take into account the knowledge and expertise of the peo�ple and respect that knowledge and experience in the research process. The research must respect the privacy and dignity of the people and researchers are encouraged to familiarize themselves with the culture and traditions of the communities. Greater consideration should be placed on the risks to physical, cultural, environmental and humane values than on the potential contribution of the research. The following steps are set out in the Protocol: • Researcher(s) will meet with the community to develop the research area and project. The general test for approval will be the successful demonstration of how research will serve Deh Cho interests. Before finances are secured, the researcher or research pro�ject must meet with the community to set standards and topic areas. The research proponent may be provided with an outline based on previous research to be used as a basis for negotiating a research agreement; • Prior to filing an application for research, the research Proponent shall first meet with the community to explain what information is required, the purpose, intended use, potential benefits and the potential harms of the research. Researchers will clearly identify research sponsor, funding sources and any person involved in the research; • The community will provide a copy of the Traditional Knowledge Protocol to the Pro�ponent and discuss the types of working arrangements that may be established; • All meetings initiated by the Proponent will be subject to reasonable administrative, honorarium, interpreter, equipment and facility fees, as determined by community pol�icy; A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 45 • During the preliminary meeting, the community will review the information provided and determine whether to support the research, subject to Terms and Conditions and the negotiation of an acceptable Agreement, or to reject the research proposal; • If the community agrees in principle to support the research proposal, further meetings may be required to work out the Terms and Conditions for support; • Costs for subsequent meetings will be determined by community policy; • Where the community requires outside technical assistance, the Proponent shall fund the community to retain, at reasonable cost, technical consulting services; • Where the community supports the research activity in principle, a committee will be established, funded by the Proponent, to develop a Research Agreement. The commit�tee will have representatives of the local First Nations, Elders, community members and the Proponent; • A Research Agreement will specify: • The type of information being gathered, • The specific use for the information, • The Terms and Conditions attached to the research process, including local hir�ing and contractual arrangements, • The Terms and Conditions for the gathering, use, storage and distribution of in�formation, • The Terms and Conditions for the use of existing materials and documents, • The Terms and Conditions pertaining to confidentiality, and • Any other Terms and Conditions as required. • The Agreement shall be approved through a First Nation Resolution. • Where an Agreement has been signed, the Deh Cho Resource Management Authority will play a lead role in project implementation. Where an Agreement has been vio�lated, the Deh Cho First Nation(s) will either assume full authority over any project ac�tivities until any outstanding issues have been resolved or terminate the Agreement without further notice; • Summary documents of the research activity shall be prepared and submitted by the Proponent, subcontractor(s) or the Deh Cho Resource Management Authority to the community. Copies of all research activity and working documents including, but not limited to, field collection tally sheets, notes, photographs, drawing, interview tran�scripts, audiotapes and maps shall be submitted to the community; • The summary documents and working documents shall be reviewed by the commu�nity, or its designated body, to determine the reliability and validity of the information A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 46 submitted. The summary documents shall also be reviewed for consistency with the community Traditional Knowledge Protocol and the Agreement. The summary docu�ments may be returned to the Proponent for further revision, as deemed necessary, prior to authorizing further use. This document was developed in response to the research being conducted in the region without community input and could easily be adapted to medical research. The issue remains, however, of who would ensure communities are aware of the process set out and who would ensure agree�ments are negotiated. A r c t i c H e a l t h R e s e a r c h N e t w o r k H e a l t h R e s e a r c h E t h i c s i n t h e Te r r i t o r i e s 47other
EIGHT URAJAIT/ROCKS MODEL FOR YOUTH HEALTH AND EMPOWERMENT CAMPSJennifer Noah

This poster talks about the goals of the youth health and empowerment …

EnglishᐃᓄᒃᑎᑐᑦEIGHT URAJAIT/ROCKS MODEL FOR YOUTH HEALTH AND EMPOWERMENT CAMPS ᑎᓴᒪᐅᔪᖅᑐᑦ ᐅᔭᕋᐃᑦ ᒪᑭᑕᔾᔪᑏᑦ ᑐᙵᕖᑦ Improving Coping Skills Learning to deal with uncomfortable emotions and working on problem solving through activities. Nunavummiut role modelling and sharing. ᐋᖅᑭᒋᐊᕆᓂᖅ ᕿᓄᐃᓵᕈᑎᒋᔪᓐᓇᖅᑕᖏᓐᓂᒃ ᐃᓕᓐᓂᐊᕐᓂᖅ ᖃᓄᖅ ᐊᑲᐅᙱᑦᑐᓂᒃ ᐃᑉᐱᓐᓂᐊᓂᖏᓐᓂᒃ ᖃᓄᖅᑑᕈᑎᖃᕈᓐᓇᕐᒪᖔᖅ ᐊᒻᒪᓗ ᐊᑲᐅᙱᓕᐅᕈᑎᓂᒃ ᐋᖅᑭᒍᙱᖃᕐᐸᓪᓕᐊᓗᓂ ᐱᓕᕆᐊᕆᕙᑦᑕᖏᑎᒍᑦ. ᓄᓇᕗᒻᒥᐅᑦ ᐃᔾᔪᐊᕈᒥᓇᖅᑐᑦ ᐊᒻᒪ ᖃᐅᔨᓴᖃᑎᒌᓐᓂᖅ. Increasing Awareness of Body & Mind Campers will engage in physical activity routine & basic meditation. Enjoy country food, healthy food preparation & Inuit games! ᐅᔾᔨᕈᓱᓕᖅᑎᑦᑎᒋᐊᕐᓂᖅ ᑎᒥᒥᒃ ᐃᓱᒪᒥᓪᓗ ᐊᐅᓪᓚᕐᓯᒪᔪᑦ ᐱᖃᑕᐅᒐᔭᖅᑐᑦ ᑭᓱᓕᕆᑎᑕᐅᓗᑎᒃ ᐊᒻᒪ ᐊᑐᖅᑕᐅᒐᔪᑦᑐᒥᒃ ᓴᐃᓕᓂᕐᒥᒃ ᐊᑐᕐᓗᑎᒃ. ᐃᓄᔅᓯᐅᑎᓂᒃ ᓂᕆᓗᑎᒃ, ᓂᕿᑦᑎᐊᕙᓕᕆᓂᕐᒥᒃ ᐊᒻᒪ ᐃᓄᐃᑦ ᐱᙳᐊᕈᓯᖏᓐᓂᒃ ᐊᑐᕐᓗᑎᒃ! Exploring Creativity Local artists, carvers & seamstresses are invited to share their talents and teach campers how to make something of their own choice. ᖃᐅᔨᕙᓪᓕᐊᓂᖅ ᐃᓱᒪᒥᓂᒃ ᐊᑐᕐᓗᓂ ᓴᓇᔪᓐᓇᓂᕐᒥᓂᒃ ᓄᓇᓕᓐᓂᑦ ᑎᑎᖅᑐᒐᖅᑏᑦ, ᓴᓇᙳᐊᖅᑏᑦ ᒥᕐᓱᖅᑏᑦ ᑐᙵᓱᑦᑎᑕᐅᕗᑦ ᐊᔪᙱᑕᖏᓐᓂᒃ ᑕᑯᑎᑦᑎᖁᔭᐅᓪᓗᑎᒃ ᐃᓕᓐᓂᐊᑎᑦᑎᓗᑎᓪᓗ ᐊᐅᓪᓚᕐᓯᒪᔪᓂᒃ ᖃᓄᖅ ᓴᓇᒍᓐᓇᕐᒪᖔᕐᒥᒃ ᓴᓇᔪᒪᔭᕐᒥᓂᒃ. Increasing Self-Esteem Self-reflection and learning tips for improving self�image. Exploring theme of gratitude & community involvement. ᓇᒻᒥᓂᖅ ᐱᔪᓐᓇᕐᓯᕚᓪᓕᕐᓂᖅ ᓇᒻᒥᓂᖅ-ᑕᑯᓂᖅ ᐊᒻᒪ ᐃᓕᓐᓂᐊᕐᓂᖅ ᓇᒻᒥᓂᖅ ᑕᑯᓐᓇᑦᑎᐊᕈᓐᓇᕐᓯᓂᕐᒥᒃ. ᖃᐅᔨᕙᓪᓕᐊᓂᕐᒥᒃ ᐊᑐᕐᓗᑎᒃ ᖁᔭᓕᓂᕐᒥᒃ ᐊᒻᒪ ᓄᓇᓕᓐᓄᑦ ᐃᓚᓕᐅᑎᓂᖅ. Self Discovery & Future Planning Campers will complete personal interest surveys and learn about various education & career choices. Guest speakers from NS, Arctic College and other professions will be invited to share their inspiration. ᓇᒻᒥᓂᖅ ᖃᐅᔨᕙᓪᓕᐊᓂᖅ ᐊᒻᒪ ᓯᕗᓂᑦᑎᓐᓄᑦ ᐸᕐᓇᐅᓯᐅᕐᓂᖅ ᐊᐅᓪᓚᕐᓯᒪᔪᑦ ᑎᑎᕋᕐᕕᖃᕋᔭᖅᑐᑦ ᓇᒻᒥᓂᖅ ᐊᑐᕈᒪᒐᔭᖅᑕᖏᓐᓂᒃ ᖃᐅᔨᓴᐅᒻᒥᑦ ᐊᒻᒪᓗ ᐃᓕᓐᓂᐊᕐᓗᑎᒃ ᖃᓄᐃᑦᑐᑐᐃᓐᓇᕐᓂᒃ ᐃᓕᓐᓂᐊᓂᕐᒧᑦ ᐃᖅᑲᓇᐃᔮᖃᕐᓂᕐᒧᑦ ᓂᕈᐊᒐᕆᔪᓐᓇᖅᑕᖏᓐᓂᒃ. ᖃᐃᖁᔨᓯᒪᓛᖅᑐᑦ ᓄᓇᕗᑦ ᓯᕗᓂᔅᓴᕗᒃᑯᓐᓂ, ᓯᓚᑦᑐᓴᕐᕕᒻᒥ ᐊᓯᖏᓐᓂᓪᓗ ᐃᖅᑲᓇᐃᔭᕐᕕᓐᓂᒃ ᐅᖃᐅᓯᖃᕋᔭᕐᖓᑕ ᐱᓇᓱᐊᕈᑎᒋᔪᒪᓯᒪᔭᖏᓐᓂᒃ. Promoting Healthy Choices Learning about and practicing skills to cope with peer pressure. Group activities, .learning, sharing & FUN! ᐊᑐᖅᑎᑦᑎᒋᐊᒃᑲᓂᕐᓂᖅ ᐃᓅᓯᖃᑦᑎᐊᓂᕐᒨᖓᔪᓂᒃ ᐃᓕᓐᓂᐊᕐᓂᖅ ᐃᓕᓯᒪᒋᐊᓕᖏᓐᓂᒃ ᐆᑦᑐᕋᖃᑦᑕᓂᕐᓗ ᕿᓄᐃᓵᕈᑎᖃᕈᓐᓇᓂᕐᒥᒃ ᑕᐃᒪᐃᒃᑯᐊᒥᓐᓄᑦ ᐊᔅᓱᕈᕈᑎᒋᕙᑦᑕᖏᓐᓂᒃ. ᑲᑎᒻᒪᓗᑎᒃ ᐱᓕᕆᖃᑦᑕᕐᓗᑎᒃ, ᐃᓕᓐᓂᐊᕐᓗᑎᒃ, ᑲᑐᑎᖃᑦᕐᓗᑎᒃ ᖁᕕᐊᓱᐊᓗᑎᓪᓗ! Celebrating Inuit Culture 2 days spent camping with elders and learning/practicing traditional land, hunting & cooking skills. Inuit Qaujimajatuqangit sharing. ᖁᕕᐊᓲᑎᖃᕐᓂᖅ ᐃᓄᐃᑦ ᐃᓕᖅᑯᓯᖓᓐᓂᒃ ᐅᓪᓘᓐᓂᒃ ᐊᐅᓪᓚᕐᓯᒪᖃᑎᖃᕐᓗᑎᒃ ᐃᓐᓇᕐᓂᒃ ᐃᓕᓐᓂᐊᕐᓗᑎᒃ/ᐊᐅᓪᓚᕐᓯᒪᓗᑎᒃ, ᐊᖑᓇᓱᓪᓗᑎᒃ ᓂᖅᑎᐅᖃᑦᑕᕐᓗᑎᓪᓗ. ᐃᓄᐃᑦ ᖃᐅᔨᒪᔭᑐᖃᖏᓐᓂᒃ ᖃᐅᔨᖃᑎᒌᓪᓗᑎᒃ. Healthy Relationships Learning about balanced relationships, communication skills, healthy sexuality & Pinasuaqtavut Prinicples. ᐃᓚᒌᑦᑎᐊᕐᓂᖅ ᐃᓕᓐᓂᐊᕐᓂᖅ ᐃᓚᒌᑦᑎᐊᕈᓯᕐᒥᒃ, ᑐᑭᓯᐅᒪᖃᑎᒌᓐᓂᕐᒥᒃ, ᖃᐅᔨᒪᔭᐅᔭᕆᐊᓖᑦ ᓄᓕᐊᕐᓂᕐᒨᖓᔪᑦ ᐊᒻᒪ ᐱᓇᓱᐊᖅᑕᕗᑦ ᐅᑉᐱᕆᔭᑦ. Jennifer Noah, B.A., Youth Research Coordinator, Qaujigiartiit Health Research Centre, Iqaluit, NU This model was developed for youth wellness and empowerment camp programs in Nunavut that are being developed with feedback from Nunavut youth. It is part of a larger project at Qaujigiartiit exploring Child and Youth Mental Health and Wellness in Nunavut with funding from the Public Health Agency of Canada www.qhrc.ca qaujigiartiityouth@gmail.com Friday, August 6, 2010other
FOOD SECURITY IN NUNAVUT A Knowledge Sharing Tool for Policy and Decision-makers

This tool was developed to assist Nunavut policy- and decision-makers working in food security by sharing information about current …

Englishᐃᓄᒃᑎᑐᑦfood-security
Atii! Let’s Do it! Healthy Living Interventions for Inuit Children, Youth, and Families in NunavutGwen Healey, Shirley Tagalik, Tracey Galloway

This collaborative project focused on exploring the social and cultural aspects of the interventions that resonate with participants in Nunavut, as well as health determinants for the target populations of the …

EnglishᐃᓄᒃᑎᑐᑦAtii! Let’s Do it! Healthy Living Interventions for Inuit Children, Youth, and Families in Nunavut Prepared for: Public Health Agency of Canada, Innovation Strategy Prepared by: Gwen Healey, PhD, Shirley Tagalik, and Tracey Galloway, PhD Qaujigiartiit Health Research Centre June 29, 2015 Project Number: Page 1 of 38 QAUJIGIARTIIT HEALTH RESEARCH CENTRE Photo Caption: Elder in Gjoa Haven, NU patting ‘tulugarjuk’ on the head, providing encouragement. Photo Credit: Dr. Tracey Galloway Page 2 of 38 QAUJIGIARTIIT HEALTH RESEARCH CENTRE TABLE OF CONTENTS Executive Summary 4 Section 1: Background 5 Section 2: Project Goals and Objectives 7 Section 3: Project Implementation and Activities 8 Section 4: Partnerships and Inter-sectoral Collaboration 10 Section 5: Implementation of Knowledge Dissemination and Exchange Plan 13 Section 6: Evaluation Activities and Methods 16 Section 7: Results 19 Section 8: Recommendations and Changes FOR Future Projects 32 Bibliography 34 Appendix A - Atii Gameshow and Young Hunters Program Evaluation Report 36 Appendix B - Atii app development project summary 37 Appendix C - Code Club Workshop Report 38 Page 3 of 38 QAUJIGIARTIIT HEALTH RESEARCH CENTRE EXECUTIVE SUMMARY This collaborative project focused on exploring the social and cultural aspects of the interventions that resonate with participants in Nunavut, as well as health determinants for the target populations of the interventions, in the hopes that other Indigenous groups will be able to develop interventions which reflect needs of the population. Activities • Pilot the Atii Gameshow, a school-based intervention game for 5 to 12 year olds in Nunavut, which was developed by Inuit youth for Inuit children. It is delivered in English and/or Inuktitut. The game is designed to promote community-identified health messaging related to maintaining healthy bodies by drinking water, eating country food, choosing nutritious store-bought foods, and being active. • Conduct a case study of the Young Hunters Program in Arviat, NU • Work with a youth media team to develop an app version of the Atii! Gameshow in Inukitut. Short-term outcomes (within 2 years) • Youth were engaged in culturally strengthening activities and developed leadership and capacity as message carriers • Youth cultural skills were improved and families valued messages promoting cultural strengths • Increased health literacy among parents and Elders by engaging in the interventions and taking home materials such as recipe cards • Event-based activities such as Atii! can play key roles in schools as celebrations, stress-relievers, rewards, markers of passage, and delivery vehicles for curriculum around leadership and healthy lifestyles • Atii! Gameshow and Young Hunters Program provided opportunities to encourage school attendance and build positive associations between fun and learning • Atii! Gameshow and Young Hunters Program provided children with exposure to traditional Inuit dietary and physical activities as well as the opportunity for development of traditional oral language skills • Atii! Gameshow and Young Hunters Program provided youth with opportunities to develop leadership and mentorship skills • Atii! linked children with strong youth role models for healthy living and sporting behaviour Qaujigiartiit Health Research Centre Page 4 of 38 SECTION 1: BACKGROUND “I think to some degree [that knowing what are the right foods to eat may be a problem for young people], ... Well I shouldn’t say, “Just younger people,” but even the older people. I will say as an example that traditional food is, of course, the best in terms of consumption of food in the north, because [we’re] used to it. And traditional food, there’s no bad food in that sense. But since the introduction of southern foods, there’s all kinds of choices now … just look at the stores, I can give you an example of one store, a little store that has aisles and aisles of stuff. I can’t even say that they’re food. They’re stuff. But you consume through your mouth, but they’re not really healthy at all. They’re just all junk food.” - Inuk Elder in Iqaluit, NU (2006) (Healey 2006) Inuit in Nunavut were nomadic peoples whose culture and lifestyle were founded on hunting and gathering foods from the local environment, land, and marine mammals, birds, and plants. Societal changes within the last century have brought about a dietary transition, characterized by decreasing consumption of traditional (country) foods and an increase in the consumption of processed, market foods. This transition may be attributed to a multitude of factors, such as colonization, overall food access and availability in today’s communities, food insecurity, and climate change. Data from the 2007-2008 Nunavut Child Health Survey suggest the overall prevalence of overweight and obesity among Inuit children is 68% (Galloway and Saudny 2012). Research examining Inuit body profiles and the standard measurement tool (Body Mass Index), has identified several limitations with the use of this measure among Inuit populations, and may possibly be overestimating obesity in this population, however, observations about eating patterns, food access, and activity highlight the need for supportive community interventions that address nutrition in Nunavut communities (Wakegijig 2012). Traditional Inuit food (country food) is more nutrient-dense than market food and contributes to a lower incidence of cardiovascular disease among Inuit (Kuhnlein 1992). Terrestrial wildlife, including caribou and moose; fish, including Arctic char, trout, and other species; and marine mammals such as seals and beluga whales, remain important sources of food. A decrease in subsistence hunting among Nunavut youth is resulting from a number of Qaujigiartiit Health Research Centre Page 5 of 38 factors, such as increased reliance on wage employment which reduces opportunities for hunting; lack of access to funds for purchasing equipment used in hunting/fishing; changing dietary preferences; inadequate training due to requirements of western-style schooling; lack of interest in an increasingly “marginalized” activity; and an increased participation in organized sports. (Chan et al, 2006). Country food is also of fundamental significance in the lives of Inuit individuals, households, and communities, as it holds physical, cultural, spiritual and economic importance (Chan et al, 2006). The harvesting, preparation, and sharing of country foods elevates the importance of country food in the diet – not only is it nutritionally superior to market foods, but it also plays a role in promoting social networks and cohesion; conveying life skills to a younger generation; promotes mental health and wellness; promotes physical activity; promotes family cohesiveness; and engages the community as a collective. Cultural food security is identified as an additional level of food security beyond individual, household, and community (Power, 2008) In promoting nutritional practices among Inuit communities, traditional food use must be maintained and promoted; consumption of nutritious market foods should be taught and encouraged; and the societal values reflected in the harvesting and preparation of the Inuit diet must be emphasized in the overall promotion of food (Blanchet et al, 2000). The promotion of Inuit cultural practices related to the harvesting and preparation of food can lead to healthier weights by promoting knowledge about the nutritional benefits of country food; promoting the skills needed to harvest foods; could reduce food insecurity in communities; and There has been an increasing movement in prevention science to study the cultural adaptation of interventions (Backer, 2001; Kumpfer, Alvarado, Smith, & Bellamy, 2002; Castro, Barrera, & Martinez, 2004). At the same time, a dialogue is emerging on the tension between the implementation of the intervention as intended by the developer (fidelity), and the modification of the program based on the specific needs of a target group (adaptation) (Castro, Barrera, & Martinez, 2004). Among the literature on family-based interventions with First Nations, Inuit and Metis peoples, the process tends to begin with the identification of a sound intervention designed for a specific population, which is then adapted to be inclusive of socio-cultural expectations of the target First Nations, Inuit, and/or Metis audience. For this project, we plan to reverse this process, instead, focusing on the development, implementation, and evaluation of interventions designed by and for Inuit in Nunavut – and measuring them. These interventions are embedded in the social context, language, and values of the population for whom they are designed. Our project will focus on exploring the social and cultural aspects of the interventions that resonate with participants, as well as health determinants for the target populations of the interventions, in the hopes that other Indigenous groups will be able to develop interventions that are reflective of their population needs. Qaujigiartiit Health Research Centre Page 6 of 38 SECTION 2: PROJECT GOALS AND OBJECTIVES In Phase 2, we aimed to meet the following key objectives: 1. To explore the social and cultural significance (as perceived by community members, families and children) of implementing an intervention to promote healthy weights, through physical activity and nutrition, that was designed by and for Inuit youth and that is founded on Inuit knowledge, foods, and language. 2. To explore the social and cultural elements of the intervention that generate the greatest positive response from children and their families in order to inform a growing body of literature that focuses on ‘cultural adaptation’ of or ‘culturally informed’ interventions. 3. To explore and identify key social determinants of children’s health specific to Nunavut communities (connects to Child and Youth Mental Health and Wellness Project), particularly related to nutrition, food security and obesity. Within these objectives, we aimed to accomplish 5 specific tasks: 1. To improve the ability of Inuit families to make healthy choices about food and physical activity in order to foster healthy body weights. 2. To improve health literacy in Inuktitut 3. To engage children, parents and guardians in a fun, culturally relevant health promotion activity in school settings 4. To explore an avenue to help increase opportunities for children and youth to learn vital traditional harvesting skills 5. To hire and train youth to lead and implement the intervention development and delivery Qaujigiartiit Health Research Centre Page 7 of 38 SECTION 3: PROJECT IMPLEMENTATION AND ACTIVITIES To meet our objectives, we had proposed interventions across 6 inter-woven components of the project: Activity 1: Revise the content of the Atii! Gameshow intervention (piloted in Phase 1) and continue to pilot in Iqaluit and Arviat as well as in 2 more schools in Nunavut where Inunnguiniq Parenting Support Program Pilots were held in 2011-2012 to help reinforce messages to parents already involved with the Child and Youth Mental Health and Wellness Project (Cambridge Bay and Gjoa Haven). Train youth in these communities to facilitate the game. Activity 2: Case study evaluation of the Young Hunters Support program in Arviat which aims to teach young children (8-12 years) traditional Inuit land and harvesting skills to provide food for their families and community as they progress into adulthood. Ultimately, this activity is about skill development in the community, as well as a means to help address food insecurity among families. This innovative program formalizes age-old knowledge transfer practices among Inuit to foster the next generation into the roles they will ultimately play in providing for their families and community. Activity 3: Building on Inusiqsiarniq (Arviat Healthier Weights Project Phase 1) to develop culturally-appropriate, innovative multimedia, such as an app for iPod/iPad, to promote the 4 messages identified by participants in Phase 1: the importance of eating country foods; drinking water; eating healthy breakfasts; eating healthy snacks with the Youth Media Team in Arviat, NU. In an increasingly ‘wired’ world and recognizing the growing number of initiatives designed to support Inuktitut language skills, an iPad app was the next logical step in utilizing available technologies to promote health messages. Characters from the Atii! Gameshow convey the above messaging. Data would be collected on the message uptake in a limited pilot of the ‘app’. Qaujigiartiit Health Research Centre Page 8 of 38 Activity 4: Incorporate Inusiqsiarniq messaging into the Makimautiksat Youth Wellness and Empowerment Camp curriculum module entitled 'Increasing Awareness of the Body, Movement and Nutrition' (This camp is Component 1 of the Child and Youth Mental Health and Wellness Project). Evaluate message uptake over the course of the remaining pilots of the Makimautiksat program in 2013-2014. Activity 5: Invite parents/guardians/elders/community to participate in the Atii! Gameshow pilots. Evidence from Makimaniq Nunavut Poverty Reduction Strategy demonstrates that parents want a closer involvement with the school and in-school activities. This intervention is a good opportunity to be responsive to the needs of Nunavut parents identified at the Poverty Summit (Iqaluit, 2011), and expand the intervention to a larger, family-based audience. Objectives accomplished for Activity 5 will be reported upon in the summary for Activity 1, below. Activity 6: Incorporate the 4 nutrition-based lesson plans and recipe material from the Inunnguiniq Parenting Support Program, as well as the 4 Inusiqsiarniq messages, into the Atii! Gameshow pilots - to be determined by community partners how this will be accomplished. Data collection from parents and community on the use of the materials, relevance, and utility. Activity 6 will be reported upon in the summary for Activity 1. The resources developed will be useful for schools, community program planners, and community organizations. The data is essential for evidence-based decision-making among Nunavut’s policy makers and agencies advocating for change in the landscape of food insecurity and healthy living in our territory. Qaujigiartiit Health Research Centre Page 9 of 38 Inunnguiniq ᐃᓄᓐᖑᐃᓂᖅ SECTION 4: PARTNERSHIPS AND INTER-SECTORAL COLLABORATION Nunavut Tunngavik Incorporated (NTI): NTI provides advice, direction and advocacy on policy and programs on behalf of beneficiaries of the Nunavut Land Claim. It will provide expertise on social and cultural development; relevant policy and research; and represent the interests of Inuit in Nunavut. Qikiqtani Inuit Association (QIA): QIA is the regional land claims organization that represents the Inuit residents of the Qikiqtaaluk region of Nunavut. Its mandate is to protect and promote Inuit rights and values. The Atii! game was developed and implemented by QIA’s Youth Development workers for its Sprouts Day Camp, and QIA staff will lead the further development and implementation of Atii! in Nunavut schools including engagement and training of youth leaders. Because the Young Harvester Program links youth with adults and Elders possessing knowledge and skills in traditional harvest, both NTI and QIA will play a role in identifying and mobilizing aspects of Inuit culture integral to the promotion of cultural competence and community wellness. University of Toronto, University of Manitoba: The universities are partners in the project as the bases from which researchers provide the project with baseline data on Inuit child health and obesity; provide expertise on assessment of nutrition and physical activity patterns and interventions in children; and lead the evaluation of Atii! and the Young Harvester Program. Nunavut Dept. of Education: The Department of Education is responsible for curriculum development and school services in all Nunavut communities. In addition, it provides early childhood and adult education, career training and development, and works closely with other government departments to ensure children and families have access to supportive services. Coalition of Nunavut District Education Authorities: The District Education Authorities (DEAs) are community school boards which oversee the implementation of public education in Nunavut and advocate for children, Qaujigiartiit Health Research Centre Page 10 of 38 parents, Elders and other members of the school communities. They provide advice and direction to school administration and staff and to other program and service providers who interact with schoolchildren. As a group, the Coalition of DEAs serves as the collective voice of communities in discussion with the Department of Education. Pinnguaq: Pinnguaq means “play” in Inuktitut. Born and based out of Pangnirtung, Nunavut, Pinnguaq aims to bring quality “play” experiences that foster learning, growth and fun. No platform or concept is out of bounds. At the root of Pinnguaq is a respect and care for the rich languages and cultures that make up this planet. Pinnguaq was created out of a desire to see strong programming available in Inuktitut, the Inuit language, and it roots itself in that mission as it moves forward. With the belief that technology and entertainment written in your language can help make the world seem a little smaller, and a little more accessible, Pinnguaq mission is to make sure all you need to do, is play. Pinnguaq provided extensive app development expertise to the project as well as led the implementation of the Code Club/Workshop in Arviat with the youth media team and students. It would not have been possible to implement the Youth Media Team without the establishment of an extensive network of partners, all of whom provided support to the youth group at no cost. These partners contributed general training for the youth group as well as specific assistance with the actual development of the app. These partners brought new equipment, software and funding to the project. • Nunavut Arctic College Communication Officer • Adobe Youth Voices, Global Foundations Initiative • Louise Abbott & Niels Jensen-- Photo Journalists • Arviat Film Society- Video & audio editing and production • Arviat TV/Isuma Films • PointsNorth Services—concept & design • Inuit Creative Expressions (ICE)—illustrations, websites, video productions • Communication Program, University of North Dakota (Dr. Tim Pasch)-- coding • Canadian Institute for Child Health (CICH)—Healthy Bodies Project Given the fact that Arviat is a remote and isolated community, collaboration with partners was often dependent on: • the serendipitous meeting of an individual with the needed expertise who happened to be visiting Arviat for another purpose; • a virtual collaboration; • the engagement of local experts to assist as and when they were available. The Youth Media Team was also able to partner with community programs such as Arviat Film Society, Adobe Youth Voices and Arviat TV, which were engaged in similar work and so there were opportunities to carry out projects across multiple stakeholder groups and sectors in a collaborative way. Qaujigiartiit Health Research Centre Page 11 of 38 We took the initiative to approach experts when word spread of their arrival in the community and would invite them to do some training with our group, which consistently generated great positive responses and interest. These sessions were very valuable for the youth and the visitors were all extremely gracious in their time with the group and with their follow-up mentorship and encouragement. Virtual connections were more difficult to sustain because they depended on good access to internet and often required local facilitation. Although the bandwidth was available in the community, the project did not have the funding to access this on a consistent basis. This became challenging over the longer term. Other partnerships enabled the Youth Media Team to accomplish its goals without requiring additional funds. The critical support provided by the University of North Dakota and Pinnguaq was essential to the successful implementation of the coding for the app. Qaujigiartiit Health Research Centre Page 12 of 38 SECTION 5: IMPLEMENTATION OF KNOWLEDGE DISSEMINATION AND EXCHANGE PLAN Activity 1: Implementation of the KD&E Plan Qaujigiartiit Health Research Centre implements a program of knowledge sharing in English and Inuktitut. The plan for sharing knowledge from this project included providing information via: • an electronic newsletter; • sharing the successes of the tool with the community through the website • community radio; • sharing the perspectives of the young participants through the Atii! Gameshow website developed in Phase 1; • school assemblies, in the case of the schools that are involved in the pilots • at conferences and meeting venues • in the published literature • and in any other way the partner organizations identify. To date, Qaujigiartiit has disseminated the results of this evaluation to participating schools and communities and to its partners: • Arviat Wellness Centres • Nunavut Tunngavik Incorporated • Qikiqtani Inuit Association • Coalition of Nunavut District Education Authorities • Curriculum and Support Services Division, Dept. of Education • All schools involved in the pilots • Arviat Community Wellness Committee The findings from Atii! have been distributed to other key stakeholders including: • The Nunavut Food Security Coalition • Dept. of Social and Cultural Development, Nunavut Tunngavik Inc. Qaujigiartiit Health Research Centre Page 13 of 38 • Nunavut General Monitoring Plan • Territorial Nutritionist, Dept. of Health, Government of Nunavut • Nunavut Roundtable for Poverty Reduction Select findings from Atii! have also been presented at National and International venues including: • International Congress on Circumpolar Health (2015) • ArcticNet Annual Scientific Meeting (2014) • Canadian Public Health Association Conference (2013 and 2014) • Indigenous Health Conference (2014) • Inuit Studies Conference (2014) A number of conference presentations and publications are also in development. Activity 2: KD&E Meeting of Northern Projects As part of the knowledge exchange and dissemination of project information across the north, we hosted a 2-day meeting of the Northern Projects in July 2014 in Iqaluit. The intent of the first day was to hear presentations about the interventions that were implemented by the northern teams and discuss detailed aspects of those interventions. The second day was a retreat held at a local territorial park located at a remote location from the community. At this retreat, an in�depth discussion about the uniqueness of Northern public health interventions was facilitates, and a number of philosophical and contextual ideas were discussed in the context of wellness in our communities. The group developed a visual model of the operational perspective on northern programs, which is shown in Figure X. The intent of the visual model is to articulate the uniqueness of northern programs; our collective assumptions when engaging in such programs; our adaptations of projects; the scalability of interventions in our contexts; our actions as northern researchers; and our overall philosophy as northerners. A more detailed presentation of the findings of the KD&E meeting is provided in Appendix X. Qaujigiartiit Health Research Centre Page 14 of 38 The Northern Projects Team group photo, and members of the team exploring the land around the Sylvia Grinnel River, a traditional harvesting location, which remains in high use today. Figure X: A visual diagram of the perspectives of the Northern Projects on interventions which are designed to benefit the community. Qaujigiartiit Health Research Centre Page 15 of 38 SECTION 6: EVALUATION ACTIVITIES AND METHODS Activity 1. Atii Gameshow pilots in Nunavut schools Intervention Details Location(s) Levi Angmak Elementary School, Arviat NU, 16 Nov 2011 Nanook School, Apex NU, 22 Nov 2011 John Arnalukjuak High School, Arviat NU, 23-25 April 2013 Quqshuun Ilihakvik Elementary School, Gjoa Haven NU, 8-10 May 2013 Kullik Ilihakvik Elementary School, Cambridge Bay NU, 13-15 May 2013 Target population School-aged children and youth Delivery method School-based Atii! Game Show event Deliverer Qaujigiartiit and school staff with youth leaders from participating communities Consent All children in participating classes with written/telephone consent of a parent or guardian who were present at school on the day of the Atii! event took part in the Atii! game activities. No children were excluded. The study protocol was approved by the Pubic Health Agency of Canada and the Board of Qaujigiartiit Health Research Centre (QHRC). Parental consent forms were sent home with teachers who were willing to have their classes participate. Teachers and Principals follow-ed up with families to obtain informed written or telephone consent for the participation of students. Equipment and Resources: Full sets of Atii! game materials were provided to each community. These materials included a game wheel, cards, activity ‘pucks’, team pinnies, sweatshirts (for Raven Game), balloons and posters. In addition, the events utilized resources that existed in community facilities such as schools and youth centres: balls, hula-hoops, scooter-boards, tricycles, skipping ropes, floor hockey sticks, gymnasium mats, poster paper, markers, tape. Where available, sound systems and microphones were utilized. Core staff competencies Minimal skills needed; enthusiasm and willingness to engage in a fun, youth-led intervention. Type of Evaluation Pre/post intervention design • Quantitative assessment of children’s knowledge from pre/post surveys • Qualitative assessment of children’s game experience from direct observation • Qualitative assessment of the impact of the Atii! intervention on communities from observation and teacher interviews Demographics Age: 5-13 years Sex: n = 267 children, 133 boys and 134 girls Qaujigiartiit Health Research Centre Page 16 of 38 Activity 2. Case Study of Young Hunters Program Intervention Details Location(s) • Qitiqliq Middle School, Arviat NU • John Arnalukjuak High School, Arviat NU • Arviat Wellness Centre, Arviat NU • Community of Arviat, NU Target population Children and youth ages 8-14 years, Community of Arviat NU Delivery method After-school community program with Elders and adult/youth leaders from participating community Deliverer Hunters and Trappers Association volunteers and Arviat Wellness Centre Consent All children welcome to participate. Written consent of the parent/guardian of child participants. Equipment and Resources: Harvesting tools and equipment provided by Hunters and Trappers Association as well as community volunteers. Core staff competencies Skill in harvesting techniques, equipment preparation and use, skinning and butchering, location of local berries and game, safe travel on the land, and wilderness survival skills. Type of Evaluation Case Study • Qualitative assessment of children’s knowledge from participant and parent surveys • Qualitative assessment of children’s program experience from participant and parent surveys • Qualitative assessment of sustainability of the intervention from parent surveys • Qualitative assessment of the impact of the Atii! intervention on communities from participant and parent surveys Demographics Age: 8-14 years Sex: n=31 children; exact numbers of girls and boys not recorded; both boys and girls participated, though more boys than girls Qaujigiartiit Health Research Centre Page 17 of 38 Activity 3. Youth Media Team Intervention Details Location(s) • Community of Arviat, NU Target population Youth ages 16-25 years Delivery method Community youth program Deliverer Arviat Community Wellness Centre/Qaujigiartiit Health Research Centre Consent Youth self-identified to participate. No consent required. Equipment and Resources: Equipment was borrowed from other initiatives in the community (see partnerships) or donated by other programs (see below) Core staff competencies Skills in use of media, graphic design, visual arts, media messaging. Type of Evaluation Process and Impact Evaluation • Qualitative assessment of youth perspectives re: participation and perceived benefits • Descriptive assessment of project deliverables Demographics Age: 17-25 years Sex: n = 9, 2 women and 7 men Qaujigiartiit Health Research Centre Page 18 of 38 SECTION 7: RESULTS Activity 1. Atii Gameshow pilots in Nunavut schools Activity 1 Outcomes Compared to Original Objectives Objective 1: To improve the ability of Inuit children to make healthy choices and carry health knowledge forward with them into adolescence and adulthood • Children gained knowledge about healthy nutrition, physical activity, safe food harvest, food sharing, and safe travel on the land • Through continued participation in Atii!, they will have opportunities to carry this knowledge into adulthood and provide mentorship for other children and youth Objective 2: To improve health literacy in Inuktitut • Children gained Inuktitut and Inuinnaqtun language skills in the areas of traditional food, harvest techniques, games, songs and other cultural activities • Through engagement with knowledgeable Elders during game activities, children gained an appreciation for Elders’ stories, songs, games and culture • Parents saw the value of traditional Inuit lifestyles for improving children’s motivation and behaviour Objective 3: To engage children in fun health promotion activities • Children participated in fun, exciting event-based activities in their communities that conveyed important knowledge about health promotion through novel and engaging means • Children identified healthy, nutritious foods and meals suitable for active, growing bodies • Children played games, including Inuit games, that demonstrated healthy lifestyles, which can be achieved in their own homes and communities Qaujigiartiit Health Research Centre Page 19 of 38 Objective 4: To promote and evaluate local interventions developed by young, motivated Inuit youth workers in Nunavut. • All elementary schoolchildren in Nunavut will now have the opportunity to participate in Atii!, a game developed by Inuit youth, where and when funding is available • Through game play, youth received numerous opportunities to provide leadership and mentorship in their communities Objective 5: To hire and train youth to lead and implement the intervention development and delivery • Youth led the development and delivery of the Atii! game pilot and intervention • youth continue to serve as leaders in their communities by identifying opportunities to play Atii!, leading the game, mentoring other youth to become game leaders and facilitators, and providing mentorship to younger peers. The recipe information from the Inunnguiniq Parenting Program was distributed to parents who attended the game pilots. They enjoyed and valued receiving the material. The Dept. of Health Recipe Cards were particularly popular. The Inuusiqsiarniq messages (drink water; eat a healthy breakfast; stay active; choose healthy snacks) were incorporated into the Timiga’ (my body) module of the Makimautiksat Youth Camp Program for the pilots held in 2013 in Panniqtuuq and Coral Harbour. The messages fit naturally in to the programming and activities and facilitators observed that the messages resonated with the youth. Short-term outcomes (within 2 years) • Youth are engaged in culturally strengthening activities • Youth develop leadership and capacity as message carriers • Youth cultural skills are improved • Families value messages promoting cultural strengths • Key social determinants of health related to nutrition, food security and obesity are identified for Nunavut communities • Increased health literacy among parents and Elders Qaujigiartiit Health Research Centre Page 20 of 38 Student and Elder participants in the Atii! Gameshow in Gjoa Haven and Arviat Long-term outcomes (more than 2 years) • Day-to-day health decisions such as food and beverage choices and active lifestyles lead to improved nutrition and healthier weights • Culturally-grounded activities result in improved mental health and promote cultural healing • Children, youth and parents recognize the value of interventions grounded in Inuit culture for improving health outcomes in families and communities • Key social determinants of health related to nutrition, food security and obesity are linked to cultural protective factors and strengths for sustainable change • Increased health literacy in Nunavut communities improves health outcomes Unintended Outcomes A key finding of the evaluation was the degree to which event-based programs such as Atii! serve in small, remote northern communities. Both teachers and children described the event as an unanticipated and pleasurable experience. Teachers were enthusiastic about the opportunity for their students to participate in an exciting and fun activity. Events such as Atii! are adaptable enough to produce a novel game experience even in communities where the game is played relatively frequently (as evidenced by use of the game in a recent smoking cessation event). Teachers were enthusiastic about the chance to relieve students’ boredom and relieve the monotony that can occur during the long school year. The event also has considerable merit as a form of stress-relief in communities experiencing prolonged poor weather or periods of sadness, such as those that occur after the death of a beloved community member. Qaujigiartiit Health Research Centre Page 21 of 38 Student participants in the Atii! Gameshow; visit from mom and baby; research assistant and student. Activity 2. Case Study of Young Hunters Program Activity 2 Outcomes Compared to Original Objectives Objective 1: To improve the ability of Inuit children to make healthy choices and carry health knowledge forward with them into adolescence and adulthood • Children gained knowledge about healthy nutrition, physical activity, safe food harvest, food sharing, and safe travel on the land • Many children report continuing to harvest and share food using the knowledge they gained during the Young Harvester Program • Through continued participation in Young Harvester Program, they will have opportunities to carry this knowledge into adulthood and provide mentorship for other children and youth Objective 2: To improve health literacy in Inuktitut • Children gained Inuktitut language terminology in the areas of traditional food, harvest techniques, other cultural activities • Through engagement with knowledgeable Elders during the program, children gained an appreciation for Elders’ knowledge and culture • Parents saw the value of traditional Inuit lifestyles for improving children’s motivation and behaviour, and reported significant changes in their child’s engagement and feelings of pride in Inuit harvesting activities. Objective 3: To engage children in fun health promotion activities • Children participated in fun, educational program-based activity in their community, which conveyed important knowledge about health promotion through novel and engaging means • Children learned to harvest local traditional foods available in their communities, and to eat and share these foods in their families and communities • Children were active on the land and water near their own communities • Children learned to make and maintain hunting equipment • Children learned that safe travel on the land and water, and observation of weather, can be fun • Country foods that were harvested included: caribou, geese, ptarmigan, eggs, rabbit. Qaujigiartiit Health Research Centre Page 22 of 38 Youth participants in the Young Hunters Program learning to safely butcher caribou, build qamutiit (traditional sleds for moving gear and supplies; and drilling an ice-fishing hole Objective 4: To promote and evaluate local interventions developed by young, motivated Inuit youth workers in Nunavut. • Through the Young Hunters Program, youth received numerous opportunities to provide leadership and mentorship to the younger students in the community and on the land. Objective 5: To hire and train youth to lead and implement the intervention development and delivery • Youth led the evaluation research on the outcomes associated with the Young Harvester program • Youth continue to serve as leaders in their communities by providing mentorship to participants of the Young Harvester Program. Unintended Outcomes A key finding of the case study was the improvement of school attendance among the children participating in the program. For logistical reasons, the program was moved from a setting in the community, to operating out of the school. As a result, children must have attended school that day to participate in the after school activity. School attendance was observed to have increased among those students during the time they were participating in the Young Hunters Program. Activity 3. Youth Media Team In Phase 1 of the Healthier Weights Inusiqsiarniq project, a Youth Media Team was established to develop healthy messaging for the community of Arviat, NU. The expectation was that youth would become effective message carriers to the larger community. The initial success of this project, led to an expanded role for the Youth Media Team in the Phase 2 Atii, Let’s Do It! Project. The objectives for this aspect of the project were to continue to provide training in various aspects of media design and development and to have youth practice these skills in the development of health messaging, including the production of an app for 6-12year olds that would teach and reinforce healthy nutrition and activity messaging. Building on Inusiqsiarniq (Arviat Healthier Weights Project Phase 1) to develop culturally-appropriate, innovative multimedia, such as an app for iPod/iPad, to promote the 4 messages identified by participants in Phase 1: the importance of eating country foods; drinking water; eating healthy breakfasts; eating healthy snacks. In an increasingly ‘wired’ world and recognizing the growing number of initiatives designed to support Inuktitut language skills, an iPad app is the next logical step in utilizing available technologies to promote messages. The National Film Board of Canada has recognized the opportunities that exist with this technology and have been offering workshops in Nunavut that focus on iPad app design and programming, specifically targeted for youth. These participants have been engaged for this activity specifically, to capitalize on capacity being built concurrently in Nunavut. Characters from the Atii! Gameshow will convey the above messaging, as well as messaging to be Qaujigiartiit Health Research Centre Page 23 of 38 developed by the Dept. of Health and Social Services Nutrition Team (one of their forthcoming projects) in English and Inuktitut. Data will be collected on the message uptake in pilot of the ‘app’ and other tools. To accomplish this activity, training workshops were held to expose the Youth Media Team members to various forms of media and to build skills in the development of promotional materials in each of those areas. We attempted to provide opportunities throughout the project for the youth to employ these skills in the creation of products that promote healthy messages. Mentorship: Nunavut Arctic College Communication Officer provided mentorship to the team over a 6 month period. During this time they discussed the power of media messaging and ways to create “sound bites” to draw audience attention. Youth prepared formal press releases, participated in news interviews, blogged, and used other forms of social media to inform and worked on basic writing skills. They prepared a series of key messages to be used in the Atii! App. These messages were recorded in English and Inuktitut along with accompanying script. Adobe Youth Voices: During the project, the youth team received training in Adobe Youth Voices. Adobe Youth Voices is the Adobe Foundation’s global initiative to increase creativity and prepare young people to be problem solvers, critical thinkers, and the leaders of tomorrow. Through this program, youth were able to develop original media, which highlighted health issues, identified solutions and, in the process, foster critical creative skills and a passion for making a difference. The team gained creative confidence – and the ability to harness their creative skills to solve problems – using advanced digital media tools and tested storytelling techniques. They became skilled in use of the Abobe software, which was made available to the project at no costs. Film Production: The Youth Media Team are members of the Arviat Film Society. This group meets weekly and received Qaujigiartiit Health Research Centre Page 24 of 38 Youth Media Team members planning, coding and writing story boards instruction in film editing and production. They are given opportunities to practice these skills in collaborative projects. This training is on-going. One of the projects created by the team is the “Culture of Cooking” which aims to promote cooking healthy food from scratch amongst youth. It features using locally harvested food in a how to format. Photo Journalism: Louise Abbott is a longtime writer, photographer, and filmmaker who has concentrated on documenting rural culture and history. Louise’s photos have appeared in more than thirty photo anthologies. In 2002 she won the Norman Kucharsky Award for Cultural and Artistic Journalism given by PWAC (the Professional Writers Association of Canada) and the Greg Clark Internship Award given by the Canadian Journalism Foundation. She collaborates with her husband award-winning cabinetmaker and photographer Niels Jensen. Louise and Niels presented a week-long workshop in photography techniques and photo journalism. They also presented the team with four Sony digital cameras for use in our project. Storyboarding: A three-day workshop is conceptual development and storyboarding was provided by Colleen Armstrong of PointsNorth Services. Colleen Armstrong, is an artist, educator and multimedia developer. She has produced several interactive web/CD-rom based projects she has learned to integrate instructional and graphic design skills. The team received training in animating drawing through the creation of vectors. They also developed storyboards for several game concepts which they created. They identified educational objectives for the app, set game goals, identified audience and skill sets, created original characters, avatars and settings, created a game story that outlined 10 potential games for the game wheel, and identified outcomes for game completion. Storybook Production: The Canadian Institute for Child Health approached the team with an opportunity to create a series of children’s storybook and songs to promote healthy eating. The team collaborated on the story development and illustrations, looked at translation of concepts between languages and developed a website to host the materials. Training in these areas was provided by Inuit Creative Expressions (ICE). ICE is a local company operated by Olivia Tagalik, a multi-media web designer. The Healthy Bodies project is hosted on the Arviat TV website at www.arviat.tv/healthy-bodies.ca Qaujigiartiit Health Research Centre Page 25 of 38 Atii visuals, and the youth media team at work. Atii! App Development The team met with Tim Pasch, Professor in Communication from the University of North Dakota. Tim offered to have his undergraduate students provide coding for the games in development. The team met with Tim to discuss the possibilities for the proposed games and to look at the ways to rethink movement through the proposed games using similar kinds of code strategies. In summer of 2014, a workshop was conducted by Tim, the Arviat Youth Media Team, Arviat TV and interested community researchers to brainstorm the potential for an Atii! app, and the mini-games that should be developed. Many ideas emerged, including the inclusion of Super Shamou (which was an old superhero comic character from the 1980s and was deemed to be outside of the scope of the project), Fabulous 4 characters from the Arviat community food project, and the Atii! Gameshow characters. The game evolved from there: • Fall of 2014, Pinnguaq was brought on board because of their expertise with the Unity Game Engine. It was determined that the game development would be outside of the scope of Apple Xcode, which was the expertise that Dr. Tim Pasch offered to the project, and that a more versatile engine (Unity) would be required. • Early Winter of 2014, a meeting took place between Taha Tabish (QHRC), Shirley Tagalik (Arviat), Charlotte Karetak (Arviat Youth Media Team), Tim Pasch (UND), and Ryan Oliver (Pinnguaq) in Quebec City, where project details were discussed and outlined. The games and content of the game were confirmed at this collaborative meeting. • Fall 2014 & Winter of 2014/15 was spent creating assets for the app (audio and visual), and building them into the different mini games (see Tables 4-6). Table 4: Table 5: Game Criteria Details Enjoyable Games have to be fun and enjoyable, so that they will be played by children and youth Intuitive Games have to be easy to play, with minimal instruction with audio instructions Relevant Game design needs to incorporate the health messages chosen by the Atii! Project Mini Games in App Details Meal or No Meal making healthy food choices Blanket toss – connecting messages of drinking water and health Health Trivia Text-based questions about nutrition choices and active living True or False Text-based questions about nutrition choices and active living Qaujigiartiit Health Research Centre Page 26 of 38 Table 6: Code Club/Coding Workshop Pinnguaq provided a four-day workshop in coding for the Youth Media Team members February 16-20, 2015. They were trained following a train-the-trainer model allowing them to pass on their skills to community youth as part of a weekly code club. Code Club was a computer coding education program for Nunavut youth, initiated by Pangnirtung-born app development company, Pinnguaq, and in partnership with the Qaujigiartiit Health Research Centre. The aim of this program was to provide Nunavut youth with training in computer coding through instruction and activities centered on building video games. Participants learned about the basics of computer logic, programming syntax, and game design. In doing so, the aim is to have them acquire new skills, to work together to build those skills, and to exercise their creativity in developing their games and improving their designs. The implementation of this program in Arviat also involved the partnership of the Arviat Wellness Centre and the community’s Youth Media Team. The first two days were focused on “training the trainers”. These trainers are older youth in the community (age 16-21 years old; 3 male, 1 female), with an interest in technology, who were taught the basics of programming language and instruction in advance of the Code Club program for middle school-aged youth participants (age 9-13 years old; 11 male, 1 female at peak attendance). They were also taken through a version of the Code Club program that the younger youth participants would be invited to during the following three days, to expose them to the teaching activities and material that would be covered. Other Features Details Glasses of water are the ‘lives’ Designed to teach the association between drinking water (instead of pop or other sugary drinks) with health in the game “Sugar rush” penalty Designed to teach the poor health outcomes associated with consuming too many sugary foods/drinks . It creates a disadvantage in the game - the next game played happens at a faster speed, making it more difficult to score points “Water Break” bonus life Taking a break for water, and rewarding the game player with a bonus life, further associating drinking water with health in the game True or False Text-based questions about nutrition choices and active living Qaujigiartiit Health Research Centre Page 27 of 38 The youth participants then took part in the three-day workshop, which was jointly administered with the older youth trainers. More details are provided in Appendix C. Throughout the week of the Code Club, a keen interest for the program was expressed, so it was organized, in partnership with the older youth from the Arviat Youth Media Team, that a weekly after-school club would be arranged. Jamie Okatsiak, one of the older youth, took on this responsibility, and led the weekly Code Club program for the participating youth until the completion of the school year. Throughout the program, feedback and evaluation was collected from the trainers and youth participants. This feedback was quite positive. Summaries of the analysis for the results from the training workshop and code club event are provided below. The Code Club portion of the program, which was targeted toward middle school-aged youth in the community, attracted an attendance, which ranged from 8-12 participants. The participants, at peak attendance, were aged 9-13 years old, 11 male and 1 female. At the end of the training session, the 8 participants that were in attendance (7 male, 1 female) expressed during the feedback discussion that they all rated their overall experience with the Code Club as 5 on a scale of 1 (very bad) to 5 (very good). They also expressed that they really enjoyed learning how to make games, and had fun during the three days that they were together. In addition, they pointed out that it was nice for them to meet people who work in the video game industry, and that they valued the new mentorship relationships that had been created with the program organizers. All of the youth participants played video games on a computer, video game console, or portable device, and the majority of them (83%) said that they attended the first day of the program because they were looking forward to making games of their own. Qaujigiartiit Health Research Centre Page 28 of 38 Code Club participants learning about software, taking a group photo, and taking an exercise break to promote creativity and activity! During the Code Club program, the youth had the opportunity to create their own video games, and each of the 8 participants who consistently attended all the sessions throughout the three days created a minimum of 3 games in Scratch. To apply their learning beyond computer programming, they also modified real-world games like tag and various Inuit games in order to demonstrate their understanding of game structure, rules, and how that impacts user experience. The trainers also had an opportunity to provide feedback about their experiences of delivering the various training sessions during the 3-day Code Club. The four trainers rated their experience of conducting the Code Club at an average rating of 4.75 on a scale of 1 (very bad) to 5 (very good). They all saw the benefit of learning the skills rom the program, and teaching them to the younger youth in the community, to foster innovation, improve creativity, promote critical thinking, and provide an outlet to learn new skills. Of the 4 trainers, 3 of them had stated that they would be willing to continue facilitating the program as an after-school club. One of the trainers took the lead on organizing this, and delivered the program weekly for the remainder of the school year. Overall, the program was a success in its reception by the trainers and youth. It provided an outlet for the youth participants and trainers to learn new skills, and express their creativity in a way that was fun and engaging. There was an appetite to learn these skills, as the youth were already quite familiar and comfortable with technology, and this program allowed them to further manipulate and customize the tools that they had already been using and have access to. The potential to grow this program beyond its one-time delivery was realized by the initiative taken by the trainers to implement a weekly Code Club in the weeks following the initial program. There is further potential to build on this uptake. Qaujigiartiit Health Research Centre Page 29 of 38 Group discussion and happy children and youth participants in the Code Club who joined the Youth Media Team from the local school Unintended Outcomes The Healthy Bodies project was an opportunity that presented itself when the Canadian Institute for Child Health was approached by the Coca Cola Foundation and asked to design an intervention for young Nunavummiut who were consuming too many sugar drinks. Having the Youth Media Team in place enabled us to partner on this project and create a set of messages and materials that targeted the early years and build additional capacity for the Atii Let’s Do It! Project. The Culture of Cooking initiative emerged out of the teams’ concern that their peers were eating a lot of pre-packages ready to heat foods. They felt that in order for there to be uptake of the healthy messages, we had to provide the opportunity to promote and develop basic cooking skills for healthy eating. In addition to the creation of the Atii App, the following knowledge products were developed: • Six original storybooks and accompanying learning activities designed for children in the early years and their parents (www.arviat.tv/healthy-bodies.ca) • Six original songs promoting healthy living (www.arviat.tv/healthy-bodies.ca) • Website to provide information about the project (www.arviatwellness.ca/index.php/atii/the-atii-gameshow) • Three promotional videos for the Atii Gameshow (http://www.arviatwellness.ca/index.php/atii/the-atii�gameshow) • Promotional videos to help create a culture of cooking healthy foods from scratch amongst youth (http:// www.arviatwellness.ca/index.php/culture-of-cooking) • Four powerpoint presentations for use on cable TV channels to support the key messages identified by the Inusiqsiarniq youth team. Challenges • Membership in Youth Media Team: The membership of the Youth Media Team changed over the period of the project. Fortunately, since the group were collaborating with other initiatives such as Adobe Youth Voices and Arviat Film Society, we were in a position to bring in new people who were aware of the project and had a basic skill set to contribute to our collective efforts. Those members who left the project left for various reasons. One was offered full time employment, one returned to school, one went onto post secondary training. We did encounter significant difficulties with the coding aspect of the app development project. Qaujigiartiit Health Research Centre Page 30 of 38 • Time: Time was a major limitation, with a lot of development taking place in a short timespan. A scaffolding for the game was developed, which will make future changes and additions easy to do. • Resources: Funding limitations were also problematic. In the initial project proposal, youth who were trained in app development by the National Film Board were engaged in the development of the app. However, the software/hardware platform for building the app changed over the course of the project, and the knowledge carried by the youth became redundant. We were required to pursue professional expertise, which required funding that we did not possess. Pinnguaq provided most of the programming and construction of the game, much of which became in-kind contributions to the project because of their belief in the outcomes of such an app. A valuable relationship has been forged with that organization, and we are looking into ways to fund future development of the app, through an additional update cycle. • Weather: The weather in Arviat provided a barrier to access. • Access to technology: The technology-focused nature of the program drew a pool of participants who were already inclined to such interests. Though this made program delivery easier, due to the alignment of the subject matter with personal interest, it is understood that lack of access to technology like computers and portable devices could have impeded the participation of other youth in the community. Next Steps • Test the Atii! app games with youth in the field, and evaluate whether and how the three game criteria have been met (enjoyable, intuitive, relevant) • An update cycle (to update the game in the Apple Store) is necessary to incorporate some additional feedback from testing with youth in the field • Add more mini-games, and refine the ones that currently exist • Further develop the knowledge and training capacity of the trainers by providing extra learning material and training resources • Expand the availability of a Code Club program to other communities across Nunavut, by providing similar training to interested youth • Create online infrastructure to share new material, and facilitate communication and interaction between program staff, trainers, and youth media team. This has the potential to expand into an inter-community knowledge-sharing network for a Code Club program. • Further leverage the mental wellness benefits of this program (i.e. learning new skills, creating an outlet for creativity and expression, etc.) along with the socioeconomic benefits of teaching employable skills in demand in the job market. This could be tied to opportunities for interested to further pursue this field through various scholarship opportunities. Qaujigiartiit Health Research Centre Page 31 of 38 SECTION 8: RECOMMENDATIONS AND CHANGES FOR FUTURE PROJECTS Incorporation of Atii! into Nunavut elementary schools provides an opportunity to assess the positive impacts of this and other healthy lifestyle programming on child health outcomes. Given the increase in childhood and adult obesity and pre-diabetes in many Indigenous populations, it would be useful to assess the efficacy of positive messaging on a large scale. New research is examining the outcomes of young harvester programs for food security and their impacts on children’s overall health and well-being. This is warranted, given the persistence of challenges surrounding mental wellness and food security in Indigenous communities, particularly those in remote northern regions. Youth Media Team: The youth were engaged as leaders and drivers of the app development project. Through the project, they developed a significant skills set in media and also demonstrated strong on-the-job skills that will serve them well into the future. In their design of healthy messaging for the community, they have gained a solid understanding of key principles of nutrition, wellbeing, active lifestyle and obesity prevention. They identified the need to expand the messages to include a focus on tobacco and substance use prevention. Their advocacy and the skills to deliver change messages should provide significant capacity for health improvements to our community into the future. A key intent in this project was that data would be collected on the message uptake in pilot of the ‘app’ and other tools. Due to the many delays in the coding process associated with the app development, the pilot has not yet taken place and uptake cannot be reported on. It will be important to complete this activity and also to attempt to collect data on other unintended products that resulted from this project such as the CICH sponsored Healthy Bodies Project and the youth Culture of Cooking initiative. There were also several storyboards developed by the youth for the Atii App that we not able to be developed in time for this project. These games required more in-depth development because they have a focus on actually teaching health related information and not just assuming what is known. The current app could be greatly enhanced by adding these game applications in the future. Qaujigiartiit Health Research Centre Page 32 of 38 Limitations and Generalizability We believe the Atii! Gameshow has applicability and merit beyond Nunavut: (1) As an opportunity for Inuit children in other northern and urban regions to connect with valuable Inuit knowledge about healthy lifestyles; and (2) As an educational tool about Inuit culture. Data on ethnicity of participants may yield information on the relative value of the intervention for Indigenous and non-Indigenous students, however we felt benefits were experienced by all participants. Many Indigenous communities have developed programs to support sustainability of traditional harvest practices among their residents. The positive outcomes associated with the Young Harvesters Program in this community are testament to its powerful impact and could be used to improve access to and sustainability of these programs in Indigenous communities. Data on ethnicity of participants may yield information on the relative value of the intervention for Indigenous and non-Indigenous students, however we felt benefits were experienced by all participants. Qaujigiartiit Health Research Centre Page 33 of 38 BIBLIOGRAPHY Cavill N, Roberts K, Rutter H. 2012. Standard Evaluation Framework for Physical Activity Interventions. September 2012: National Obesity Observatory, Public Health England, United Kingdom. Egeland GM, Pacey A, Cao Z, Sobol I. 2010. Food insecurity among Inuit preschoolers: Nunavut Inuit Child Health Survey 2007-2008. CMAJ 182(3):243-8. Egeland GM. 2010. Inuit Health Survey 2007-2008: Nunavut Health Report. Available online: http:// www.inuithealthsurvey.ca/pdf/Adult%20Report_NUNAVUT.pdf Embrace Life Council. 2010. Nunavut Suicide Prevention Strategy. Iqaluit: Embrace Life Council. Available online: http://inuusiq.com/nunavut-suicide-strategy-2/ Fillion M, Laird B, Douglas V, Van Pelt L, Archie D, Chan HM. 2014. Development of a strategic plan for food security and safety in the Inuvialuit Settlement Region, Canada. Int J Circumpolar Health 73:25091. Furgal C, Hamilton S, Meakin S, Rajdev V. 2012. Policy Options and Recommendations for Addressing Food Security in Nunavut: Synthesis Document. Report prepared for the Government of Nunavut, Department of Health and Social Services. Galloway, T. and H. Saudny (2012). Nunavut Community and Personal Wellness, Inuit Health Survey (2007-2008). Montreal, OQ, Centre for Indigenous Nutrition and the Environment McGill University. Galloway T, Young TK, Egeland GM. 2010. Emerging obesity among preschool-aged Canadian Inuit children: results from the Nunavut Inuit Child Health Survey. International Journal of Circumpolar Health, 69(2):151-7. Government of Nunavut. 2002. First Annual Report of Inuit Qaujimajatuqangit Task Force, 12 August 2002. Government of Nunavut. 2007. Nutrition in Nunavut: A Framework for Action. Iqaluit NU: Department of Health and Social Services. Government of Nunavut, Moloughney BW. 2009. Preventing Chronic Disease in Nunavut. Iqaluit NU: Department of Health and Social Services. Healey, G. (2006). An Exploration of Determinants of Health for Inuit Women in Nunavut. Masters of Science, University of Calgary. Kuhnlein, H. V., and Soueida, R. (1992). "Use and Nutrient Composition of Traditional Baffin Inuit Foods." Journal of Food Consumption and Analysis 5: 112-126. Nunavut Department of Health. 2012. Healthy Living. Available at: http://www.livehealthy.gov.nu.ca/en Nunavut Food Security Coalition. 2014. Nunavut Food Security Strategy and Action Plan 2014-16. Available at: http://www.tunngavik.com/files/2014/05/NunavutFoodSecurityStrategy_ENGLISH.pdf Qaujigiartiit Health Research Centre Page 34 of 38 Poverty Summit. 2011. The Makimaniq Plan: A Shared Approach to Poverty Reduction. Available online: http:// www.makiliqta.ca/en/makimaniq-plan Roberts K, Cavill N, Rutter H. 2012. Standard Evaluation Framework for Dietary Interventions. September 2012: National Obesity Observatory, Public Health England, United Kingdom. Rosol R, Huet C, Wood M, Lennie C, Osborne G, Egeland GM. 2011. Prevalence of affirmative responses to questions of food insecurity: International Polar Year Inuit Health Survey 2007-2008. Int J Circumpolar Health 70(5):488-97. Statistics Canada. 2013. Household food insecurity 2011-2012. Available online: http://www.statcan.gc.ca/pub/ 82-625-x/2013001/article/11889-eng.htm Wakejigij J, Osborne G, Statham S, Doucette Issaluk M. 2013. Collaborating toward improving food security in Nunavut. Int J Circum[polar Health 72:21201. Qaujigiartiit Health Research Centre Page 35 of 38 APPENDIX A - ATII GAMESHOW AND YOUNG HUNTERS PROGRAM EVALUATION REPORT Qaujigiartiit Health Research Centre Page 36 of 38 APPENDIX B - ATII APP DEVELOPMENT PROJECT SUMMARY Qaujigiartiit Health Research Centre Page 37 of 38 APPENDIX C - CODE CLUB WORKSHOP REPORT Qaujigiartiit Health Research Centre Page 38 of 38food-security
ATII GAMESHOW Healthy Living Intervention for School Children in Nunavut

This tool was developed to assist Nunavut policy- and decision-makers working in food security by sharing information about current literature through interviews with key Nunavut food security policy- and …

EnglishᐃᓄᒃᑎᑐᑦATII GAMESHOW Healthy Living Intervention for School Children in Nunavut Evaluation Report Tracey Galloway and Gwen Healey January 2012 1 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre TABLE OF CONTENTS Atii Gameshow 3 Background 3 Implementation 4 Partnerships 4 Evaluation 5 References 10 2 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre ATII GAMESHOW Healthy Living Intervention for School Children in Nunavut Winter 2011-2012 B ACKGROUND The purpose of this project was to improve the ability of Inuit children to make healthy choices about food and activity and carry health knowledge forward with them into adoles�cence and adulthood; to improve health literacy in Inuktitut; to engage children in a fun, team-style health promotion game; to promote and evaluate a local intervention developed by young, motivated Inuit youth workers in Nunavut.; to hire and train youth to lead and implement and deliver the intervention. The mandate of the Qaujigiartiit Health Research Centre is to improve northern health outcomes through research and program development - this network is and must be a com�munity driven, northern lead, health and wellness research network that facilitates the iden�tification of and action on health priorities to address health disparities of Nunavummiut. This project is a group effort and the partners are partners Nunavut Tunngavik Inc.; Qikiqtani Inuit Association; and University of Toronto. We worked together to improve and validate the health and nutrition-related content of the game; to formalize the game with the development of a manual in English and Inuktitut for the game's operation; the fine-tuning of a special wheel and posters; and the index cards with questions and answers in Inuktitut. We worked with a Nunavut-based graphic design company to produce the pilot games; pilot the game in Iqaluit and Arviat, Nunavut in Fall 2011; and evaluate the game and the process followed by the partners. The evaluation format oral evaluations through sharing circles and group dialogue with teachers and student par�ticipants, as well as the use of pedometers to monitor physical activity. The project results will be celebrated and shared with communities and partners via com�munity radio; website; meeting of the partner organizations and dissemination through local networks among the partner organizations; through the school and parent organizations in Nunavut; with government partners in health promotion through information- sharing through out website, discussions, meetings, and presentations. P ROJECT O BJECTIVES 3 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre 1. To improve the ability of Inuit children to make healthy choices and carry health knowledge forward with them into adolescence and adulthood 2. To improve health literacy in Inuktitut 3. To engage children in a fun, engaging health promotion activity 4. To promote and evaluate a local intervention developed by young, motivated Inuit youth workers in Nunavut. 5. To hire and train local youth (30 or less years in age) to lead and implement the project I MPLEMENTATION Three separate pilots of the Atii! Game were conducted in November 2011 (Table 1). Schools were notified 6 weeks prior to pilots and pilots were incorporated into existing curriculum goals around healthy lifestyles. One day prior to each pilot, the research team visited the schools, brought game materials, met with principals and staff and selected a location within the school for the game activities. On the day of the pilot, the research team assembled the game and conducted the pilot with classroom teachers participating as assistant facilitators. Verbal assent was elicited from each child prior to placement of accelerometers. Anonymity of children was preserved; the only identifying information collected was the age of each child, which was provided by teachers (age of child is needed to evaluate physical activity data from accelerometry). Table 1. Selected information on Atii! pilots Location Date Facility No. of child participants Age range (years) Duration (min�utes) Arviat NU 16 Nov 2011- am Levi Angmak Elementary School 8 9-11 50 Arviat NU 16 Nov 2011 - pm Levi Angmak Elementary School 22 9-11 45 Apex NU 22 Nov 2011 - pm Nanook School 20 5-11 76 P ARTNERSHIPS Each members of the partnership team played a specific role in the project: Qaujigiartiit health Research Centre: Gwen Healey provided overall project support and administration, coordination and team leadership. An admin person from Qaujigiartiit also provided support to the project. Gwen hired and supported the project coordinator, and 4 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre provided intervention research and evaluation knowledge to the design and implementation of the intervention. Qikiqtani Inuit Association: Becky Kilabuk designed the game and worked with Gwen Healey (QHRC) and Tracey Galloway (UofT) to improve the content of the game with a greater focus on northern foods, country foods, Inuit games and activities, and Inuktitut language. Becky led the 3 pilots of the game in 2 schools in Nunavut and was the creative mind behind the visual design of the materials as well as the content. University of Toronto: Tracey Galloway supported Becky Kilabuk in the implementation of the pilots, collected notes, took photographs, and monitored the use of pedometers before and after the game. Tracey analysed the final evaluation data for the game use and developed the academic poster presented at the International Polar Year conference in Montreal in April 2012. Nunavut Tunngavik Inc.: Sharon Edmunds-Potvin provided support-in-principle for the pro�ject and guidance when needed. This organization will take the findings of the project and potentially move research and policy forward within their organization. Overall, the partnership team was very strong and all members made excellent and positive contributions. This team will pursue the Phase 2 call for proposals from the Public Health Agency of Canada to continue this project and expand it into other schools in Nunavut and communities in Canada. E VALUATION i. Quantitative assessment of children’s knowledge The game facilitator (Kilabuk) conducted pre- and post-game surveys to assess both general knowledge and the level of enthusiasm among children for game subject matter. Surveys consisted of five questions asked of participants who were seated consuming pre- and post�game snacks. Questions were asked using an energetic, upbeat style that reflected the facili�tator’s approach to conducting the game. The questions required yes/no, show-of-hands and shout-out responses. An observer (Galloway) measured the prevalence of correct and incor�rect answers. The pre- and post-tests included identical questions, to evaluate changes in knowledge level and enthusiasm among participants. Table 2 summarizes the results of pre�and post-game surveys: Table 2. Responses to pre- and post-test surveys Question Pilot and survey Group response 5 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre Do children need to eat fruit and vegetables every day? (Yes) Follow-up: How many servings of fruit and vegetables do chil�dren need to eat every day to stay healthy? (5-10) Arviat am pre-test Responses were generally hesitant. Children re�sponded “yes” to the first question and gave a range of hesitant responses to the follow-up (1-3 servings). Do children need to eat fruit and vegetables every day? (Yes) Follow-up: How many servings of fruit and vegetables do chil�dren need to eat every day to stay healthy? (5-10) Arviat am post-test Responses were enthusiastic. Children quickly re�sponded “yes” and “5-10” servings. Do children need to eat fruit and vegetables every day? (Yes) Follow-up: How many servings of fruit and vegetables do chil�dren need to eat every day to stay healthy? (5-10) Arviat pm pre-test Responses brisk and enthusiastic. Answered first ques�tion correctly. Responses to follow-up ranged from 1- 5 servings. Do children need to eat fruit and vegetables every day? (Yes) Follow-up: How many servings of fruit and vegetables do chil�dren need to eat every day to stay healthy? (5-10) Arviat pm post-test Responses brisk, correct. Do children need to eat fruit and vegetables every day? (Yes) Follow-up: How many servings of fruit and vegetables do chil�dren need to eat every day to stay healthy? (5-10) Apex pre-test All said “yes” but only a few made guesses as to the follow-up, ranged from 1-3. A single child responded “5-10”. Do children need to eat fruit and vegetables every day? (Yes) Follow-up: How many servings of fruit and vegetables do chil�dren need to eat every day to stay healthy? (5-10) Apex post-test Response quick, universal, accurate. Name three Inuk foods that are good for you. Arviat am pre-test Two children easily named 3 Inuk foods. Arviat am post-test All children called out the names of Inuk foods, 5 different foods in total. Arviat pm pre-test Four children were quick to name three Inuk foods. Arviat pm post-test All children named three Inuk foods. Apex pre-test Many children quickly named three Inuk foods. Apex post-test All responded quickly, accurately. Which drink is more healthy, milk or pop? Arviat am pre-test Responses were correct (water) but quiet. Arviat am post-test Responses were brisk and correct. Arviat pm pre-test All identified water as the healthier drink choice. Arviat pm post-test All selected water. Apex pre-test All children quickly named water. Each was holding a full personal water pouch provided by the school. Apex post-test Response quick, correct. Do you know the Inuktitut word for (insert three locally available foods, for example caribou meat, dried caribou, fish)? Arviat am pre-test Five children easily provided the Inuktitut words for locally-available foods. Do you know the Inuktitut word for (insert three locally available foods, for example caribou meat, dried caribou, fish)? Arviat am post-test All children called out the words. Do you know the Inuktitut word for (insert three locally available foods, for example caribou meat, dried caribou, fish)? Arviat pm pre-test Half of children could provide the Inuktitut words. Do you know the Inuktitut word for (insert three locally available foods, for example caribou meat, dried caribou, fish)? Arviat pm post-test All children contributed Inuktitut words. Do you know the Inuktitut word for (insert three locally available foods, for example caribou meat, dried caribou, fish)? Apex pre-test Three children provide Inuktitut words. Do you know the Inuktitut word for (insert three locally available foods, for example caribou meat, dried caribou, fish)? Apex post-test Half of children provided Inuktitut words. Name three things that children can do to stay healthy (make healthy food and beverage choices, eat country/Inuk foods, be physically active, get adequate sleep). Arviat am pre-test Three children contributed the responses: exercise, keep moving, stay busy. Name three things that children can do to stay healthy (make healthy food and beverage choices, eat country/Inuk foods, be physically active, get adequate sleep). Arviat am post-test Children responded: be physically active and eat healthy foods. Name three things that children can do to stay healthy (make healthy food and beverage choices, eat country/Inuk foods, be physically active, get adequate sleep). Arviat pm pre-test Three children contributed the following: run, jog, exercise. Name three things that children can do to stay healthy (make healthy food and beverage choices, eat country/Inuk foods, be physically active, get adequate sleep). Arviat pm post-test The majority of children identified both physical ac�tivity and healthy eating as contributors. Name three things that children can do to stay healthy (make healthy food and beverage choices, eat country/Inuk foods, be physically active, get adequate sleep). Apex pre-test While majority of respondents identified “exercise, run”, one child mentioned “eat healthy”. Name three things that children can do to stay healthy (make healthy food and beverage choices, eat country/Inuk foods, be physically active, get adequate sleep). Apex post-test All responded but with both physical activity and healthy eating. Comparison of the results of pre- and post-testing yields the following key findings: 6 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre • Many more children provided responses to survey questions after the game, compared to before the game. • Responses to post-test surveys were provided in a more brisk fashion than in pre-test surveys. • Accuracy of response improved after game play. • We believe this demonstrates that Atii! game play increases children’s level of enthusi�asm on the subjects of nutrition, physical activity, Inuit cultural knowledge and health. ii. Quantitative assessment of children’s physical energy expenditure during the game In recent studies, accelerometry has proven an effective tool for measuring sedentary and physically active behaviours in children (Yıldırım et al. 2011). During the pre-test focus group, children were fitted with Actigraph accelerometers programmed at 1-second epochs (Trost et al. 2005) which were worn throughout the game session and removed at the post�game focus group. With the assistance of the classroom teacher, the age and sex of children were recorded by the observer (Galloway) and results (Figure 1) were compared to age- and sex-appropriate cutoffs to determine thresholds of PA (Freedson et al. 2005; Mattocks et al. 2007). Figure 1. Physical activity results from accelerometry 7 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre • Overall, despite differences in the duration of the game, the Atii! intervention resulted in a substantial amount of light and moderate physical activity for participants. This is difficult to achieve in a large group setting and attests to the creativity and energy of the game’s facilitator (Kilabuk). • The three pilots provided the opportunity to test the effects of various approaches to the game on physical activity. We varied several key components of the game’s organi�zation in the different pilots and tested the outcome on accelerometry results. For ex�ample, we played music throughout the afternoon pilot in Arviat, which may have re�sulted in a higher energy level among participants. We observed a lower amount of sedentary activity and a higher amount of moderate and vigorous physical activity among participants of the Arviat pm pilot compared to the am pilot. • Two substantial changes were implemented between the Arviat and Apex pilots: at Apex, we located the game in the school’s gymnasium and we did not use chairs or benches, meaning children had to rise from a seated position on the floor to take part 8 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre in the various activities. We believe the larger space and lack of conventional seating resulted in significantly lower level of sedentary activity as even seated participants made adjustments in posture and positioning that constituted physical activity. At Apex we also observed significantly higher levels of light, moderate and vigorous physical activity and even measurable activity classified as very vigorous. • As a result, we believe that space and seating are key components of promoting chil�dren’s physical activity during the Atii! intervention. iii. Qualitative assessment of children’s game experience A trained observer (Galloway) made comprehensive notes on the implementation of each pilot. Field notes were transcribed and analyzed for observations and concepts that offer explanatory insight into the experience of participating in the game. • Children enjoyed participating in the Atii1 intervention. Children smiled, laughed and cheered through the various components of the game. • Considerable interest had been generated prior to the pilots by announcements and classroom discussions. Children anticipated participating in a “health game” (their words). The game set-up is colourful and vibrant and incorporates many cultural sym�bols and motifs. The presence of game equipment (hula hoops, balloons, pylons, etc.) engaged children’s attention from the outset. • Teachers and community workers also enjoyed participating in the game. Local assis�tance was especially helpful in negotiating issues of accent, dialect and regional food availability that arose during activities requiring Inuktitut vocabulary. • The game reinforced cultural ideas about community participation. Where possible (Apex pilot) the facilitator selected teams with as broad an age range as possible. Chil�dren cheered each other on. Older children assisted younger children or gave each other hints where helpful. • The “competitive” nature of the game made team play fun but was largely negated by a generous scorekeeping system that rewarded all participants. In this way, all partici�pants enjoyed game play and no undue pressure was exerted on children to perform. • There were numerous opportunities for group activity, which increased both the physical activity and knowledge components of the game. 9 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centre In terms of children’s overall health knowledge, the following information was obtained: • Children’s general knowledge of the relationship between diet, physical activity and health is very good. • There are gaps in knowledge about particular areas of Canada’s Food Guide. These could be addressed by adding to the game information on serving size and recom�mended numbers of servings. • Children’s health knowledge is strongest in the area of physical activity. Children are aware that healthy bodies are produced through regular physical activity. • The link between diet and health is less well established. Very rarely did children iden�tify any aspect of “diet” or “food” as a means for producing health. • Adequate sleep or rest was not identified as a means for producing health. • There is an opportunity to improve children’s knowledge of the role of traditional Inuit foods in producing health. Despite excellent knowledge and vocabulary on this subject, children did not identify country food as a source of health. • Knowledge of Inuktitut vocabulary varies among Nunavut communities. • There was good general knowledge of the need to drink water and stay well hydrated. R EFERENCES Freedson P, Pober D, Janz KF. 2005. Calibration of accelerometer output for children. Med Sci Sports Exerc 37(11 Suppl):S523-30. Mattocks C, Leary S, Ness A, Deere K, Saunders J, Tilling K, Kirkby J, Blair SN, Riddoch C. 2007. Calibration of an accelerometer during free-living activities in children.Int J Pediatr Obes 2(4):218-26. Trost SG, McIver KL, Pate RR. 2005. Conducting accelerometer-based activity assessments in field�based research. Med Sci Sports Exerc 37(11 Suppl):S531-43. Yıldırım M, Verloigne M, de Bourdeaudhuij I, Androutsos O, Manios Y, Felso R, Kovács É, Doesseg�ger A, Bringolf-Isler B, te Velde SJ, Brug J, Chinapaw MJ. 2011. Study protocol of physical activity and sedentary behaviour measurement among schoolchildren by accelerometry: Cross-sectional sur�vey as part of the ENERGY-project. BMC Public Health 11:182-8. 10 Atii Gameshow Evaluation Report January 2012 Qaujigiartiit Health Research Centrefood-security
Reviewer Health Research Ethics Checklist

The purpose of this checklist is to provide a guide for the reviewer as to the kinds of ethical issues you should think about when reviewing a proposal for health research in …

EnglishᐃᓄᒃᑎᑐᑦQaujigiartiit Health Research Centre Nunavut 1 HEALTH RESEARCH ETHICS CHECKLIST COMMUNITY ENGAGEMENT c Has there been any consultation with the community before the submission of the proposal? If so, what kind and with whom? c Have letters of support been included? c Are there community partners (individuals, organizations, advisory groups, etc.)) involved in the project? c Are community members involved in collecting information or guiding the project? c How will community members be acknowledged for their contributions? Will it be in the form of publication credits, remuneration (payment), or some other way? Is this adequate/fair? COMMUNITY RESEARCH AGREEMENT c Has a community research agreement been proposed to determine the responsibilities of community partners and researchers in the project? If so, who will represent the community to sign it? RESEARCH METHODS c Are research data management methods appropriate? Things to think about • length of time • sensitive methodology • ensuring confidentiality • security and storage of files and data • data access issues once the study is complete RISKS AND BENEFITS Qaujigiartiit Health Research Centre Nunavut 2 c Are there risks associated with this project? If so, are they clear? Do they affect a person or the community (or both or neither)? c Are there benefits associated with this project? If so, are they clear? ADVERTISEMENTS AND RECRUITMENT c Are there advertisements to recruit participants or advertise the study? Are they appropriate? c Are they bribing people to participate? CONFIDENTIALITY c Are the confidentiality protections appropriate? For example, what steps have they taken to make sure confidentiality will be maintained, and given the small populations of northern communities, are they adequate for the North? c How do they propose to handle negative or sensitive results? Is this adequate/fair for the community? PARTICIPANT WITHDRAWAL c Are there appropriate mechanisms for participants to withdraw from the study? FINANCIAL OR OTHER COMPENSATION: c Is there compensation to participants? c Is it appropriate to their time and effort? c Is it coercive (does it influence them to participate when normally they wouldn’t)? c Do they propose dollar amounts of compensation to participants? If so, is this acceptable? c What is the funding source? c Will the funding source want rights over data or publication? Qaujigiartiit Health Research Centre Nunavut 3 CONSENT FORMS c Are they consistent with protocol? c Is there a draft consent form submitted? c Is the language (language and reading level) appropriate for participant population? c Does it include a waiver of legal rights? c Is the method of obtaining consent appropriate? Will it explained properly (i.e. by a person or through a video?) SHARING KNOWLEDGE c Is there a clear explanation of how the research results will be shared with the community? c Is it in a form that community members will understand? CONFLICT OF INTEREST c Are there any conflicts of interest (including with funders or with participants)? c Have they been appropriately managed? SCIENTIFIC REVIEW c Are the Hypothesis/research questions appropriate for the region? c Are the recruitment/sampling strategies appropriate? c Are the study numbers justified? c Has there been a scientific review and/or ethical review by the proponent’s university, organization, or any other northern body? Qaujigiartiit Health Research Centre Nunavut 4 ANY OTHER REVIEWER COMMENTS Date & signature of primary reviewerethics
WHAT IS RESEARCH?!Taha Tabish

An educational document on how research happens and the components of research broken …

EnglishᐃᓄᒃᑎᑐᑦWHAT IS RESEARCH?! RESEARCH 101: Taha Tabish Qaujigiartiit Health Research Centre National Inuit Youth Summit 2015 August 20, 2015 QAUJIGIARTIIT HEALTH RESEARCH CENTRE • Founded in 2006 by Executive Director, Gwen Healey • “Our goal is to enable health research to be conducted locally, by northerners, and with communities in a supportive, safe, culturally-sensitive and ethical environment, as well as promote the inclusion of both Inuit Qaujimajatuqangit and Western sciences in addressing health concerns, creating healthy environments, and improving the health of Nunavummiut” • www.qhrc.ca WHO AM I? • Taha Tabish, Primary Health Care Research Coordinator • Born in Karachi, Pakistan; grew up in Toronto • Done biological research in labs and program research with people in communities • Notoriously terrible in photographs WHO DOES RESEARCH? WHO DOES RESEARCH? WHO DOES RESEARCH? WHAT IS RESEARCH?! • Research is about asking questions, and finding ways to answer those questions • We all have knowledge, and research allows us to tap into that knowledge • Research should not be “about us, without us”, but “by us, with us, and for us” ETHICS • Research SHOULD: • Be beneficial • Be respectful • Be confidential • Minimize harm • Ensure INFORMED CONSENT • Ethical Considerations: • Who benefits? • Who owns the data/ research? • Who is allowed access to the data/research? • How is the research/data being represented? RESEARCH METHODS • Quantitative Research • Qualitative Research • Mixed Methods Research “What is the average size of a Nunavut household?” “How do people understand and relate to the concept of ‘household’?” DATA COLLECTION ANALYSIS • Quantitative: • Counts, proportions, statistics, trends (over time and space) • Qualitative: • Transcribe, code, identify themes, determine relationships CONCLUSIONS/INFERENCES • How the data is interpreted impacts the conclusions that are drawn • It is important to understand the research methodology before making your own judgments about the conclusions that another researcher may infer • Conclusions that are made in absence of other knowledge (i.e. richer source of data, cultural knowledge, etc.) may be incomplete or incorrect, and need to be represented as so SHARING FINDINGS RINSE, REPEAT • Research is iterative - i.e. questions that you answer may lead to other questions that come from it! • Lessons learned, and feedback incorporated • Sometimes, your whole process or approach may need to be changed. Be responsive and adaptable. • Most importantly: have fun! ACTIVITY In small groups, develop your own research question/study. Some things to consider: • Research Partners • Ethical considerations • Methods (Qualitative/Quantitative/Mixed) • Data sources • Analysis • Sharing findings Qujannamiik! Quannaqqutin! Thank you! www.QHRC.caclimate-change-and-environment
Exploring Health-Related Indicators of Climate Change in NunavutGwen Healey

A report on how climate change was found to endanger health in six key …

Englishᐃᓄᒃᑎᑐᑦ Exploring Health-Related Indicators of Climate Change in Nunavut Qaujigiartiit Health Research Centre February 2015 Photo Credit: Gwen Healey. High tide flooding of breakwater in Iqaluit in 2012. This report was prepared as part of a larger project entitled “A mixed method study to explore human health indicators and youth perspectives on climate change and adaptation in Nunavut.” Prepared by: Gwen Healey, M.Sc., PhD Executive and Scientific Director Qaujigiartiit Health Research Centre Iqaluit, NU Gwen.healey@qhrc.ca www.qhrc.ca This project was funded by the Health Canada Climate Change and Health Adaptation in Canada’s North funding program in 2014-15. The content of this report does not necessarily reflect the views of Health Canada. The citation for this report is as follows: “Healey, G.K. (2015) Exploring human health-related indicators of climate change in Nunavut. Iqaluit, NU: Qaujigiartiit Health Research Centre.” March 2015 Table of Contents Background 4 Objectives of Indicators Project 4 Literature Review 5 What is an Indicator? 5 Environmental Health Indicators 5 Morbidity and Mortality Indicators 6 Population Vulnerability Indicators 6 Mitigation, Adaptation and Policy Indicators 7 Stakeholder-identified Indicators for Nunavut 8 Workshop 8 Indicator List 8 Where do we go from here? 13 Appendix A – Complete Indicator List 14 Appendix B – Participant List 17 Background In a report published by the Lancet Commission on Climate Change, climate change was found to endanger health in six key ways: changing patterns of disease and mortality, extreme weather events, food insecurity, water scarcity, heat waves, and threats to built structures including housing and public infrastructure (Chan, 2008; Costello, 2009). The Arctic Climate Impact Assessment (Assessment, 2004a, 2004b) suggests that future climate change will be experienced earlier and more acutely in polar regions (Assessment, 2004b). Indigenous peoples of the North are affected by climate change and future changes in climate are likely to continue to pose serious challenges (Assessment, 2004b). For Inuit communities, sea ice travel is critical for accessing wildlife resources and traveling between communities during winter months. Uncharacteristic weather patterns, storm events, and ice conditions are increasingly undermining the safety of travel and hunting or fishing activities (Assessment, 2004b; J. Ford et al., in press; Furgal & Seguin, 2006; G.J. Laidler, 2006; G.J Laidler et al., 2009). The increased risks to safety, as well as longer traveling distances, are challenging the harvesting of country foods and may be decreasing the consumption capacity of some members of the community (Communities of Arctic Bay, Nickels, Furgal, Buell, & Moquin, 2005; J. D. Ford, 2009; Furgal & Seguin, 2006). Northern community members have shared concerns that climate change, and the resulting change in the environment and communities, further compounds existing health issues, including mental health and wellness, nutritional deficiencies, rates of respiratory illness, livelihood and economic stability, safety, and the spread of disease (Furgal & Seguin, 2006). Authorities need to be able to assess, anticipate, and monitor human health vulnerability to climate change, in order to plan for, or implement action to avoid these eventualities. Indicators provide a tool to assess, monitor, and quantify human health vulnerability, to aid in the design and targeting of interventions, and measure the effectiveness of climate change adaptation and mitigation activities. This project was undertaken to help identify a series of Nunavut-specific health-related indicators of climate change, which can be tracked over time to assist with the monitoring of the impacts of climate change in our communities. Objectives of Indicators Project The overall objective of this project was to investigate human health indicators of climate change on a global scale with a particular focus on the indicators relevant to the Circumpolar region and Nunavut communities. We conducted a literature review, developed an initial list of indicators, and worked with stakeholders at the community, regional, and territorial levels in Nunavut to identify a subset of indicators, which are specific to Nunavut and the perspectives of Nunavummiut. This group exercise was conducted through a 1-day workshop in Iqaluit, NU. Specific actions included: To produce a literature review of human health indicators of climate change with a particular focus on indicators specific to the Circumpolar World and Nunavut To Identify gaps in the indicator basket To identify data sources for the indicators To achieve a collaborative agreement on the indicators through a workshop process, which can be used by communities and regional and territorial agencies in their planning and monitoring currently and in the future A research summary of the project Collaborative dissemination plan developed by the partners Literature Review What is an Indicator? A health indicator is a single measure that is reported on regularly and that provides relevant and actionable information about population health and/or health system performance and characteristics. An indicator can provide comparable information, as well as track progress and performance over time. Health indicators support provinces/territories, regional health authorities and facilities as they monitor the health of their populations and track how well their local health systems function.They help in monitoring key performance dimensions described in the Health System Performance Measurement Framework, which provides a common approach for managing health system performance across the country. Environmental Health Indicators Environmental health indicators are itegral to the measurement and monitoring of the impacts of climate change on human health and inform the development of interventions (Hambling, 2011). Several environmental health indicators have been proposed in the literature, including: greenhouse gas emissions/air quality (English et al, 2009); temperature/humidity (English et al, 2009); pollen (English et al, 2009); wildfires (English et al, 2009); drought (English et al, 2009); harmful algae blooms[ Harmful Algae Blooms (HABs), can produce nerve and liver toxins. They have been reported as occurring longer in duration and of greater intensity due to increased temperatures due to climate change and nutrient runoff. Human exposure is of concern through both drinking water contamination and recreational exposure. Human exposure to HABs can cause eye and skin irritation, vomiting and stomach cramps, diarrhea, fever, headache, pains in muscles and joints, and weakness. Chronic exposure in drinking water supplies is suspected to have links with liver damage and cancer. Potential indicators include shellfish poisoning and blue-green algae and red tide outbreaks. ] (English et al, 2009); permafrost (northward shift in distribution) (Ford & Smit, 2004); sea ice (thickness and areal extent) (Ford & Smit, 2004; Laidler et al 2006); river hydrology (reduced water levels recorded in Baker Lake (Fox, 2002); slopes - coastal erosion, landslide frequency (Ford & Smit, 2004); and the health of terrestrial and marine ecosystems[ E.G. Range extension of some fish species and killer whales; northward movement of tree line; changes in timing of caribou migration, polar bear migration; species die-offs related to extreme weather events/disease] (Ford & Smit, 2004). Morbidity and Mortality Indicators Mobidity is the term used to refer to the state of disease in a population and usually specifically relates to the incidence of illness. Mortality is the term used for the number of people who died in a population, specifically the incidence of death in that population. Morbidity and mortality related indicators of climate change, are the indicators which highlight the cause of illness or death in a population due to climate change related factors. In the literature, such indicators have been identified to be: morbidity and mortality from extreme heat (Chan, 2008); extreme weather event injuries and mortality (Chan, 2008); environmental infectious disease[ Malaria and dengue fever are among the most important vector-borne diseases in the tropics and subtropics; Lyme disease is the most common vector-borne disease in the USA and Europe. Encephalitis is also becoming a public health concern. Health risks due to climatic changes will differ between countries that have developed health infrastructures and those that do not. Human settlement patterns in the different regions will influence disease trends. While 70% of the population in South America is urbanized, the proportion in sub-Saharan Africa is less than 45%. Climatic anomalies associated with the El Niño–Southern Oscillation phenomenon and resulting in drought and floods are expected to increase in frequency and intensity. They have been linked to outbreaks of malaria in Africa, Asia and South America. Climate change has far-reaching consequences and touches on all life-support systems. It is therefore a factor that should be placed high among those that affect human health and survival (Githeko, 2000) ] (e.g. West Nile virus, Lyme disease, others) (Chan, 2008); and respiratory and allergic disease and mortality related to air quality and pollens (Chan, 2008). Population Vulnerability Indicators Population vulnerability indicators for Nunavut comprise the largest segment of the literature on climate change-related impacts on the health of Nunavummiut. A changing climate is closely linked to the health of Inuit in Nunavut. The need for a greater focus on indigenous conceptualizations of and approaches to health, enhanced surveillance, and an evaluation of policy support opportunities have been highlighted as key gaps in current climate change initiatives (J. Ford, 2012).The Inuit worldview sees a relationship between our environment and our health and wellness (Egan, 1998; Healey et al., 2011; Watt-Cloutier, 2004). Inuit have had a respectful relationship with the land for millennia and all communities in Nunavut maintain that relationship today by continuing harvesting practices, camping and living on the land, and by leading and engaging with the formal processes that have been created by Governments and Inuit organizations to promote collaborative environmental stewardship. The environment and the country foods that come from the land, lakes, rivers and sea, remain central to the way of life, cultural identity, and health of northern people (Duhaime, Chabot, Frechette, Robichaud, & S., 2004; Egan, 1998; Van Oostdam et al., 2005; Watt-Cloutier, 2004). Hunting lies at the core of Inuit culture, teaching such key values as courage, patience, tenacity, and boldness under pressure - qualities that are required for both the modern and traditional world in which Inuit live (QHRC, 2012; Watt-Cloutier, 2004). Previous research has shown that climate change affects not only the ability to harvest or participate in traditional activities, but compromises the very essence of the Inuit worldview that holds the relationship between wellness and environment as an integral part of our way of life (Communities of Arctic Bay et al., 2005; Egan, 1998; Furgal & Seguin, 2006; Healey et al., 2011; Watt-Cloutier, 2004). By dramatically changing the environment, the Inuit way of life is compromised. Recent research has shown that northern communities feel the mental health and wellness impacts of this challenge very deeply (Cunsolo Willox et al., 2013; Egan, 1998; Fritze, 2008; Ostapchuk, in press). In the analysis of population vulnerability to climate change, it is important to recognize that specific populations will be vulnerable to different climate-sensitive outcomes. For example, those with preexisting asthma and chronic obstructive pulmonary disease will be particularly vulnerable to temperature-related effects of O3. Children have also been identified as especially susceptible to many of the effects of climate change, such as flooding, heat, and air pollution. Vulnerability can be assessed by not only documenting baseline exposures, but also by taking into account population sensitivities, the capacity to adapt, and how individuals and society respond to climate threats. Vulnerable populations are persons who are independent on a daily basis, but during and after an emergency may require assistance to meet their basic needs. This includes, but is not limited to, persons with preexisting chronic diseases, individuals with disabilities (physical or mental), the elderly (Horton, 2010), low-income populations (English et al., 2009), and children (English et al., 2009). Any change in their daily routine may become a stressor. Population vulnerability indicators are important for public health and emergency response officials to target susceptible communities for prevention and intervention activities (Dr Maria Neira, 2014; Hambling, 2011). Additional vulnerability indicators, which have been identified in the literature, include: heat vulnerability/drought (Chan, 2008; English et al., 2009); flooding (compromises safety of structures/homes/buildings and increases vulnerability to water-borne illness/mould) (English et al., 2009); sea-level rise (Assessment, 2004a; English et al., 2009); erosion of shoreline (compromises safety of structures/homes/buildings) (English et al., 2009; J. D. Ford & Smit, 2004); access to harvesting and species availability (increases vulnerability to food insecurity) (J. D. Ford & Smit, 2004); stress/depression (Cunsolo Willox et al., 2012; Cunsolo Willox et al., 2013; J. D. Ford & Smit, 2004); safety (increased weather unpredictability and variability, changing wind directions, unpredictable ice conditions (J. D. Ford & Smit, 2004); species availability (J. D. Ford & Smit, 2004); culture loss (J. D. Ford & Smit, 2004; Healey et al., 2011; Watt-Cloutier, 2004)) Mitigation, Adaptation and Policy Indicators Limited attention has been paid to indicators of public health adaptation to climate change until recently (Dr Maria Neira, 2014; J. Ford et al., in press; Hambling, 2011). Adaptation indicators are needed to measure the status of public health efforts to avoid, prepare for, and effectively respond to the risks of climate change(Hambling, 2011). Data on adaptation indicators are sparse (English et al., 2009). Proposed indicators include community access to cooling centers during heat waves (and transportation to the centers) (English et al., 2009); heat wave early warning systems (English et al., 2009; Hambling, 2011); municipal heat island mitigation plans; surveillance systems per state that collect data on the human health effects of climate change (English et al., 2009); and a public health workforce trained in climate change research, surveillance, or adaptation (English et al., 2009). A city or region may also set up an adaptation climate change task force that includes a representative from the health sector. Stakeholder-identified Indicators for Nunavut Workshop In a workshop held on January 26, 2015, stakeholders from the Government of Nunavut Climate Change Section, the Nunavut Research Institute, Nunavut Tunngavik Inc., Qaujigiartiit Health Research Centre, and 3 youth participants from Hall Beach, Arctic Bay and Pond Inlet met to discuss the indicator list in Appendix A. An overview of the literature was provided to participants, as well as a review of the definition and use of indicators. The indicators on the list were placed on the walls of the room, and each participant was given 10 stickers to place on the 10 indicators they felt were the most important. After this process, the group discussed all of the indicators that were given stickers, starting with the most and finishing with the least. The indicators that did not receive any stickers were removed from the list. Participants noted that this was a very difficult process because many of the indicators were connected or overlapped. There was a significant amount of discussion about direct and indirect measures; proxy measures[ A proxy measure is an indicator, which indirectly measures the phenomenon in question. For example, the chemical composition of ice core samples is used as a proxy measure for atmospheric composition and temperature over time – without the direct measures of air quality and temperature.]; timeliness of measures; and accuracy of data sources. Participants also discussed the possibility of combining indicators into indices. This discussion is common in epidemiology and is an important part of identifying workable indicators. All participants agreed that this set of 20 indicators would be very useful for community, regional, territorial and national-level planning, intervention development, and monitoring. Indicator List In order of importance, the indicators that were identified by the workshop participants are as follows: 1.Food Security Vulnerability Participants noted that this was connected to other indicators, and included access to country food, harvesting, and store-bought food. The cost of fuel to hunt or jet fuel to transport store-bought foods was discussed as increasing vulnerability. Weather-related food shortages were also discussed. 2.Culture Loss Vulnerability Participants felt it was important to recognize that culture and wellness are linked and that is this is very important in Nunavut - possibly more than anywhere else. Being on the land is part of a way of life for most Nunavummiut: the land unifies families and strengthens relationships between people. It plays a role in connecting the older and younger generations and the knowledge each holds. 3. No. of cities/municipalities participating in climate change initiatives Participants felt it was important to monitor how and why initiatives were taking place. Participants noted that if a community does not have initiatives, it would be important to explore barriers (resources, awareness, etc.). Having this data would create an opportunity to share program/plans/initiatives across communities and could be an indicator that cities are thinking of sustainable solutions and/or preparedness. 4. Permafrost (distribution/shift) Participants felt it was an important indicator related to structural stability of buildings and infrastructure, access to the land, and connects to the food system (e.g. lakes drying up as a result of permafrost melt in the Yukon). 5. Mental Health - rates of depression/anxiety related to climate change Participants felt that the fact that climate change and mental health are linked in the eyes of our communities is strong evidence of the connection. Participants also discussed the link between mental health and being able to do physical work, such as paid employment or childcare. 6. No. of health surveillance systems related to climate change Participants felt that this was an important indicator for preparedness - if we are regularly and systematically collecting data, then we will be better equipped to take action. 7. Sea Ice thickness and extent Participants felt that this directly linked to food security, culture loss, safety, and injury mortality/morbidity. Participants noted that sea ice location and the amount of time that the ice is present and traversable were also important indicators in addition to thickness and extent. Impacts on the health of the marine ecosystem were discussed such as water temperature, microorganisms and impact on the food chain. Participants discussed sea ice as an important indicator those studying coastal infrastructure - longer ice-free periods exposes coastal infrastructure to more wind and erosion. Participants also discussed sea ice as an important indicator for economic development, e.g. less support for ice-based fisheries, opening the Northwest Passage for the shipping season, resource harvesting/development, and tourism. 8. No. of injuries/mortality related to extreme weather events Participants noted an increase in frequency of extreme weather events and thought this indicator was important for measuring the health-related impacts of these events, as well as for monitoring adaptive and mitigating interventions of climate change. Relates to economic losses (i.e. Coral Harbour hunters who lost $100,000 worth of hunting equipment in a recent incident), as well as preparedness and search and rescue challenges (such as dependence on volunteers - which also puts them at risk) Participants also discussed what they called the ‘cascading effects’ of extreme weather and provided a specific example from Chesterfield Inlet, where the community experienced a 4-day white out. The plane couldn’t land to deliver a part required to fix the one water truck in the community. The truck wasn't able to service the health centre so it had to close, which meant that no one could access emergency health care. 9. No. of organizations/institutions/departments participating in climate change initiatives Participants felt that this was an important indicator for emergency preparedness and search and rescue and, therefore, mitigation and adaptation initiatives. It would be an important indicator of upstream monitoring of preparedness and planning and could inform the allocation of resources and policy development on a territorial level, not just the community-level, which is where the action is most likely to take place (e.g. SAR). 10.No. of heat wave early warning systems Participants noted that this is an important mitigation and adaptation indicator as many buildings in Nunavut, for example, are not designed for hot weather ventilation (e.g. some buildings don’t have windows that open). Increasing heat waves would provide evidence for a change in building practices and other initiatives. 11.Human cases of environmental infectious disease (e.g. lyme disease, West Nile virus, avian cholera) Participants felt this indicator was important to detect and confirm if an environmental exposure is affecting health Also underscored the need for a health surveillance system, which would increase our ability to monitor pathogens and exposures over time. 12.Health of Terrestrial and Marine Ecosystems Participants discussed changes in migration patterns and biodiversity and how those changes will affect people. Connects to human health, environmental infectious disease, as well as environmental contaminants and levels of potentially harmful substances in wildlife, fish, birds and plants. Arctic marine ecosystem is really undergoing a lot of change - new emerging fish species are becoming a main part of the diet for seals, e.g. caplin. 13.No. of injuries/mortality from sea ice instability For the same reasons as the sea ice extent/distribution indicator. 14.Vulnerability of elderly, living alone, poverty, children, infants, and individuals with disabilities Participants noted that the feeling of alienation or isolation was important to highlight as a challenge. Vulnerable people are less likely to have the resources to adapt to the effects of climate change on an individual level. 15.No. of Public health work force available/trained in climate change research/surveillance/adaptation Participants noted this would be a good measure of Nunavut’s capacity to address health-related climate change challenges. This related to planning and preparedness as well. Planning and preparedness - if we don’t have the people to implement the plans, then mitigation/adaptation initiatives are stalled. 16.Indicators of water security Participants discussed the availability and quantity of potable water; consumption patterns, and new pathogens/bacteria in potable water. Noted that most Nunavut communities have only one source of drinking water (no secondary source). Availability of potable water is also impacted by the climate change-related changes to river hydrology (e.g. Baker Lake). Waste management indicators are also important for water security. Population growth and climate change increase vulnerability, e.g. waste water is discharged into the marine environment (sometimes filtered through tundra) as communities have limited resources to meet national guidelines. This raises concerns about wildlife and contaminants leeching. Where permafrost is melting, material leeches into potable water supplies. 17.Use of renewable energies Participants felt this indicator is a good indicator of mitigation, helps generate awareness, and is already measured. 18.Air Quality - Respiratory/allergic disease and mortality related to air pollution/pollens Participants discussed the impact of road dust in the summer months and the need for air quality testing both indoors and outdoors. 19.Harmful Algae Blooms (HABs)/shellfish poisonings Participants noted that HABs are starting to show up in the western Arctic, and that they are now noticing 2 blooms, where there only used to be 1. They feel this can be attributed to warming waters and resulting increase in nutrient availability for the algae. This indicator is also important for the health of marine ecosystems because microbial-level changes are where we will see the most immediate changes in the short-term and thus require monitoring. 20.Number of education initiatives to fill the knowledge gap between older and younger generations Youth participants noted the need for the monitoring of education initiatives, which bridge generational perspectives and knowledge about climate change and health. For example, participants discussed how a search and rescue event near Coral Harbour was the result of a dispute between older and younger hunters and their perceptions of safety on the sea ice. It is an important indicator of adaptation and mitigation Table 1: Stakeholder-identified health-related indicators of climate change for Nunavut Indicator Data Source Environmental Health Indicators Increase in heat alerts/warnings Environment Canada, Government of Canada HABs: human shellfish poisonings, HAB Outbreak monitoring in freshwater and ocean waters. Shellfish poisonings are often underreported. Permafrost (distribution, melt, shift) Nunavut Permafrost Databank (to be finalized in 2016) Canada-Nunavut Geoscience Office Dept. of Environment, Government of Nunavut Sea Ice (thickness, areal extent, location, duration) Canadian Ice Service (Environment Canada) Water Security (including river hydrology, availability and quantity of potable water, consumption patterns, presence of pathogens) Environmental Health Section, Dept. of Health, Gov. of Nunavut Hydrometric Service, Environment Canada, Government of Canada Nunavut Water Board Aboriginal Affairs and Northern Development, Government of Canada Study-based data collection Health of terrestrial and marine eco-systems Nunavut General Monitoring Plan (AANDC), Government of Canada Nunavut Wildlife Management Board Nunavut Impact Review Board Nunavut Water Board Dept. of Fisheries and Oceans, Government of Canada Fisheries and Sealing Division, Dept. of Environment, Government of Nunavut Canadian Wildlife Service Study-based data collection Long-term monitoring research projects (e.g. Polar Data Catalogue administered by ArcticNet) Morbidity and Mortality Indicators No. of injuries/mortality from extreme weather events StatsCanada CIHI Environment Canada No. of injuries/mortality from sea ice instability Search and Rescue, Community and Government Services, Government of Nunavut Human cases of environmental infectious disease/positive test results in reservoirs/sentinels/vectors Public and environmental health surveillance data Air quality - Respiratory/allergic disease and mortality related to increased air pollution and pollens Admin data - Incidence/prevalence rates of respiratory/allergic disease Modeling Mental Health – reports of depression, anxiety due to climate change-related Study-based? Vulnerability Indicators Elderly living alone, poverty status, children, infants and individuals with disabilities Census Food Security Vulnerability (elderly, those in poverty, infants, and disabled) Nunavut Food Security Coalition data sources Culture loss vulnerability (due to access to harvesting grounds compromised; erosion of shoreline compromises safety of structures/homes/buildings; stress/depression; safety; species availability Nunavut Climate Change Section Data Repository F/T collaborative hazard mapping project Canada-Nunavut Geoscience Office Study-based data collection, cross-sectional datasets Mitigation Indicators Use of renewable energy Energy Secretariat, Government of Nunavut Dept. of Economic Development and Transportation, Government of Nunavut Canadian High Arctic Research Station (mandate to work on renewable energy research) Adaptation Indicators No. of health surveillance systems related to climate change None currently exist. Public health work force available/trained in climate change research/surveillance/adaptation Study data-based data collection No. of community-based education initiatives to raise awareness about climate change and bridge the knowledge gap between older and younger generations Study data-based data collection Policy Indicators No. of cities/municipalities participating in climate change initiatives (i.e. sustainable community development plans, climate change adaptation plans, etc.) Nunavut Climate Change Section Data Repository (online) Climate Change and Health Adaptation Program, Health Canada, Government of Canada No. of Nunavut organizational/institutional /departmental agencies participating in climate change initiatives (i.e. ) Nunavut Climate Change Section Data Repository (online) Climate Change and Health Adaptation Program, Health Canada, Government of Canada Where do we go from here? Each of the participants in the workshop valued the opportunity to participate in this exercise and indicated that they had learned something new through the process. This report will be shared widely with stakeholders. As a collective, we must continue to identify areas for collaboration and advancement of climate change research, mitigation, and adaptation initiatives in Nunavut. Mitigation of the health effects of climate change will require input from all sectors of government and civil society, collaboration between many academic disciplines, and new ways of international cooperation (Costello, 2009). Involvement of local communities in monitoring, discussing, advocating, and assisting with the process of adaptation is crucial (Costello, 2009; Furgal & Seguin, 2006; Healey et al., 2011). An integrated and multidisciplinary approach to reduce the adverse health effects of climate change first by taking action on the events linking climate change to disease and, second, implementing public health systems to deal with adverse outcomes (Costello, 2009). Appendix A – Complete Indicator List Indicator Literature Data Source Environmental Health Indicators GHGEs (English et al., 2009) Environment Canada? O3 estimates due to climate change (English et al., 2009) Environment Canada? Maximum and minimum temperatures, heat index (English et al., 2009) Environment Canada? Increase in heat alerts/warnings (English et al., 2009) Environment Canada? Pollen counts, ragweed presence (Global Biodiversity Information Facility 2009) - Limited number of pollen-monitoring stations – not monitored by Environment Canada Frequency, severity, distribution, and duration of wildfires (English et al., 2009) Droughts (English et al., 2009) Need to analyze precipitation data – Environment Canada? HABs: human shellfish poisonings, HAB (English et al., 2009) Outbreak monitoring in freshwater and ocean waters. Shellfish poisonings are often underreported Permafrost (distribution, melt, shift) (J. Ford & Pearce, 2012; Young, 2012) Sea Ice (reduced thickness, areal extent) (J. Ford et al., in press; G.J. Laidler, 2006; G.J Laidler et al., 2009) River hydrology (Fox, 2002) Slopes (coastal erosion, landslide frequency) (J. D. Ford & Smit, 2004) Terrestrial and marine eco-systems (J. D. Ford & Smit, 2004) Morbidity and Mortality Indicators Excess mortality due to extreme heat (English et al., 2009) (Chan, 2008) StatsCan/CIHI Excess morbidity due to extreme heat (English et al., 2009) (Chan, 2008) StatsCan/CIHI No. of injuries/mortality from extreme weather events (Chan, 2008) Admin data No. of injuries/mortality from sea ice instability (J. D. Ford & Smit, 2004; G.J Laidler et al., 2009) SnR data Human cases of environmental infectious disease/positive test results in reservoirs/sentinels/vectors (Chan, 2008) Public health surveillance data Respiratory/allergic disease and mortality related to increased air pollution and pollens (Chan, 2008) Admin data - Incidence/prevalence rates of respiratory/allergic disease Modeling Mental Health – reports of depression, anxiety due to climate change-related (Cunsolo Willox et al., 2012; Cunsolo Willox et al., 2013) Study-based? Vulnerability Indicators Elderly living alone, poverty status, children, infants and individuals with disabilities (English et al., 2009) Census Food Security Vulnerability (elderly, those in poverty, infants, and disabled) (J. D. Ford, 2009) Nunavut Food Security Coalition data sources Flooding vulnerability (elderly, those in poverty, infants, and disabled living in 100- and 500-year flood zones) (English et al., 2009) Flood Plain mapping – AANDC Sea level rise vulnerability (population by community within 5 km of coast with “very high” vulnerability to sea level rise) (English et al., 2009) All communities in Nunavut Sea-level rise mapping – AADNC? Culture loss vulnerability (due to access to harvesting grounds compromised; erosion of shoreline compromises safety of structures/homes/buildings; stress/depression; safety; species availability (J. D. Ford & Smit, 2004) Mitigation Indicators Energy Efficiencies (English et al., 2009) Use of renewable energy (English et al., 2009) Number of Vehicle Miles traveled (English et al., 2009) Adaptation Indicators Access to cooling centres (English et al., 2009) No. of heat wave early warning systems (English et al., 2009) No. of health surveillance systems related to climate change (English et al., 2009) Public health work force available/trained in climate change research/surveillance/adaptation (English et al., 2009) Policy Indicators No. of cities/municipalities covered by Kyoto protocol (English et al., 2009) No. of cities/municipalities participating in climate change initiatives (i.e. sustainable community development plans, climate change adaptation plans, etc.) (English et al., 2009) No. of Nunavut organizational/institutional /departmental agencies participating in climate change initiatives (i.e. ) (English et al., 2009) Appendix B – Participant List Participant Title Sara Holzman Climate Change Program Specialist, Dept. of Environment, Government of Nunavut Zoe Martos Climate Change Outreach Specialist, Dept. of Environment, Government of Nunavut Colleen Healey Climate Change Program Manager, Dept. of Environment, Government of Nunavut Romani Makkik Research Advisor, Nunavut Tunngavik Inc. Ceporah Mearns Youth Research Coordinator, Qaujigiartiit Health Research Centre Taha Tabish Primary Care Research Coordinator, Qaujigiartiit Health Research Centre Gwen Healey Executive and Scientific Director, Qaujigiartiit Health Research Centre Judy Kunnuk Youth Participant, Pond Inlet Adrienne Mike-Qaunaq Youth Participant, Arctic Bay Nina Kuppaq Regrets: Angie Mullen Territorial Epidemiologist, Dept. of Health, Government of Nunavut Michelle LeBlanc-Harvard Environmental Health Specialist, Dept. of Health, Government of Nunavut Maureen Baikie Chief Medical Officer of Health, Dept. of Health, Government of Nunavut References Assessment, A. C. I. (2004a). Impacts of a warming Arctic. Summary report of the Arctic Climate Impact Assessment. : Cambridge University Press: Cambridge, UK. . Assessment, A. C. I. (2004b). Key Finding 8 – Indigenous Communities. Arctic Climate Impact Assessment. . Cambridge, UK.: Cambridge University Press. Chan, M. (2008). [How Climate Change Endangers Human Health. ]. Communities of Arctic Bay, K. a. R. B., Nickels, S., Furgal, C., Buell, M., & Moquin, H. (2005). Unikkaaqatigiit – Putting the Human Face on Climate Change: Perspectives from Nunavut. . Ottawa, ON: Inuit Tapiriit Kanatami & Nasivvik Centre for Inuit Health and Changing Environments at Université Laval & the Ajunnginiq Centre at the National Aboriginal Health Organization. Costello, A. (2009). Managing the health effects of climate change. The Lancet, 373 (9676), 1693-1733. Cunsolo Willox, A., Harper, S., Ford, J., Landman, K., Edge, V., & Rigolet, I. C. G. (2012). “From this place and of this place:” Climate change, sense of place, and health in Nunatsiavut, Canada. Social Science & Medicine, 75, 538-547. Cunsolo Willox, A., Harper, S., Ford, J. D., Edge, V., Landman, K., Houle, K., . . . Wolfrey, C. (2013). Climate Change and Mental Health: An Exploratory Case Study from Rigolet, Nunatsiavut, Labrador. Climatic Change, 121(2), 255-270. Dr Maria Neira, W. D., Department of Public Health, Environmental and Social Determinants of Health (PHE). (2014, September 19 2014). Climate change: An opportunity for public health. Retrieved Septemerb 23, 2014 Duhaime, G., Chabot, M., Frechette, P., Robichaud, V., & S., P. (2004). The Impact of dietary changes among the Inuit of Nunavik (Canada): A socioeconomic assessment of possible public health recommendations dealing with food contamination. . Risk Analysis, 24, 1007-1018. Egan, C. (1998). Points of view: Inuit women's perceptions of pollution. International Journal of Circumpolar Health, 57, 550-554. English, P., Sinclair, A., Ross, Z., Anderson, H., Boothe, V., Davis, C., . . . Simms, K. (2009). Environmental Health Indicators of Climate Change for the United States: Findings from the State Environmental Health Indicator Collaborative. Environmental Health Perspectives, 117(11), 1673-1681. Ford, J. (2012). Indigenous Health and Climate Change. American Journal of Public Health, 102(7), 1260-1266. Ford, J., Cunsolo Willox, A., Chatwood, S., Edge, V., Furgal, C., Harper, S., . . . Pearce, T. (in press). Adapting to the Health Effects of Climate Change for Inuit. American Journal of Public Health. Ford, J., & Pearce, T. (2012). Climate Change vulnerability and adaptation research focusing on the Inuit subsistence sector in Canada: Directions for future research. The Canadian Geographer, 56(2), 275-287. doi: DOI: 10.1111/j.1541-0064.2012.00418.x Ford, J. D. (2009). Vulnerability of Inuit food systems to food insecurity as a consequence of climate change: a case study from Igloolik, Nunavut. . Regional Environmental Change, 9, 83–100 Ford, J. D., & Smit, B. (2004). A Framework for Assessing Vulnerability of Communities in the Canadian Arctic to Risks Associated with Climate Change. . Arctic., 57(4), 389-400. Fox, S. (2002). These are things that are really happening: Inuit perspectives on the evidence and impacts of climate change in Nunavut. . In I. Krupnik & D. Jolly (Eds.), The earth is faster now: Indigenous observations of Arctic environmental change (pp. 12-53). Fairbanks, Alaska: Arctic Research Consortium of the United States. Fritze, J., Blashki, G., Burke, S., Wiseman, J. (2008). Hope, despair and transformation: Climate change and the promotion of mental health and wellbeing. International Journal of Mental Health Systems, 2(13). Furgal, C., & Seguin, J. (2006). Climate Change, Health and Vulnerability in Canadian Northern Aboriginal Communities. Environmental Health Perspectives, 114(12), 1964-1970. Githeko, A., Lindsay, S., Confalonieri, U., Patz, J. (2000). Climate change and vector-borne diseases: a regional analysis. Bulletin of the World Health Organization, 78(9), 1136-1147. Hambling, T., Weinstein, P., Slaney, D. (2011). A review of frameworks for developing environmental health indicators for climate change and health. International journal of environmental research and public health, 8(7), 2854-2875. Healey, G., Magner, K., Ritter, R., Kamookak, R., Aningmiuq, A., Issaluk, B., . . . Moffit, P. (2011). Community perspectives on the impact of climate change on health in Nunavut, Canada. Arctic, 64(1), 89-97. Horton, G., Hanna, L., Kelly, B. . (2010). Drought, drying and climate change: Emerging health issues for ageing Australians in rural areas. Australasian Journal on Ageing, 29(1), 2-7. Laidler, G. J. (2006). Inuit and scientific perspectives on the relationship between sea ice and climate change : The ideal complement? . Climatic Change, 78(407-444). Laidler, G. J., Ford, J. D., Gough, W. A., Ikummaq, T., Gagnon, A. S., Kowal, S., . . . Irngaut, C. (2009). Travelling and hunting in a changing Arctic: assessing Inuit vulnerability to sea ice change in Igloolik, Nunavut. . Climatic Change, 94(363-397). Ostapchuk, J., Harpers, S., Cunsolo Willox, A., Edge, V., and the Rigolet Inuit Community Government. (in press). Climate Change Impacts on Inuit Health: Community Perceptions from Elders and Seniors in Rigolet, Nunatsiavut, Canada Journal of Aboriginal Health. QHRC, Q. H. R. C. (2012). Inunnguiniq Parenting Program. Paper presented at the Nunavut-Greenland Circumpolar Conference on Education, Iqaluit, NU. Van Oostdam, J., Donaldson, S. G., Feeley, M., D., A., Ayotte, P., Bondy, G., . . . Kalhok, S. (2005). Human health implications of environmental contaminants in Arctic Canada: A Review. . Science of the Total Environment,, 352, 165-246. Watt-Cloutier, S. (2004). Climate Change and Human Rights. Human Rights Dialogue: “Environmental Rights”, 2(11). Young, K., Marchildon, G. (Eds). (2012). A Comparative Review of Circumpolar Health Systems. Circumpolar Health Supplements, 9.climate-change-and-environment
Climate Change And Health Community Photovoice Research ProjectKate Magner, Gwen Healey

A research report on the effects on health by the climate change in the …

EnglishᐃᓄᒃᑎᑐᑦResearch Report CLIMATE CHANGE AND HEALTH COMMUNITY PHOTOVOICE RE�SEARCH PROJECT Kate Magner Summer Student • Qaujigiartiit/Arctic Health Research Network - Nunavut Gwen Healey, M.Sc. Executive Director • Qaujigiartiit/Arctic Health Research Network - Nunavut Table of Contents Introduction 2 Climate Change and Health Community-led Research Exploring the Impacts of Climate Change on Health in Nunavut Methods 3 Study Design Photovoice Analysis Findings 4 The Climate Change and Health Model Reflection and Changing Knowledge Systems “We need to think about the past, reflect on our experiences and look forward to the future” The Impacts of Climate Change on Health The Transition from Past Climates to Future Climates Necessary Adaptation The Call to Action Action Plan 8 Individual Community Territorial National Discussion 9 Conclusion 10 References 11 INTRODUCTION Climate Change and Health Climate change is a prominent topic of concern in the north, and the impacts on health are not yet fully understood. In a recent report published by the Lancet Commission on Cli�mate Change, climate change was found to endanger health in six key ways. These were changing patterns of disease and mortality, extreme weather events, food insecurity, water scarcity, heat waves, and threats to built structures including housing and public infrastruc�ture (Costello 2009). While the health effects of climate change are global in scope, they bear particular rele�vance in the north. Indeed, northern communities hold a close relationship with the land. The environment and the country foods that come from the land, lakes, rivers and sea re�main central to the way of life, cultural identity, and health of northern people (Van Oost�dam 2005). For Inuit communities, sea ice travel is critical for accessing wildlife resources and traveling between communities during winter months. Problematically, uncharacteris�tic weather patterns, storm events, and ice conditions are increasingly undermining the safety of travel and hunting or fishing activities (Furgal 2006). The increased risks to safety, as well as longer traveling distances, are challenging the procurement of country foods and decreasing the consumption capacity of some members of the community (Furgal 2006). As well as posing threats to livelihood and food security in the north, warming tempera�tures are leading to an increase in the number and species of biting flies and insects, pos�ing the threat of increased vector borne disease. Furthermore, permafrost melting is at�tributable to a warmer climate and will have serious implications for the structural integ�rity of northern houses and buildings (Furgal 2006). In addition to these emerging public health considerations, northern community members have shared the concern that climate change may further compound existing health issues including mental health and wellness, nutritional deficiencies, rates of respiratory illness, livelihood and economic stability, safety, and the spread of disease. www.nunavut.arctichealth.ca 2 Community-led Research Research which strives to understand the ways in which climate change affects the health of northern communities, must elicit meaningful community involvement in the research process. Moreover, community participation and social mobilization are essential for iden�tifying the factors that enhance or inhibit local adaptive capabilities in the face of climate change. In May 2009, Qaujigiartiit/AHRN-NU facilitated a community based research methods workshop for Nunavummiut community members. This workshop was developed after 3 years of consultations with community members on local health priorities (Healey, 2006). It was generated in response to community requests for a forum in which to gain technical knowledge and hands-on research experience. The workshop was partnered with the climate change and health research project in order to provide an experiential learning opportunity to community participants, thereby building confidence and capacity so that they may lead their own health research projects and par�ticipate meaningfully in projects that come to their communities. Exploring the Impacts of Climate Change on Health in Nunavut This project employed the photovoice technique in order to explore the impacts of climate change on health in Nunavut, from the perspectives of community members. This project provided participants with the opportunity to not only apply the skills learned during the workshop, but also contribute to a growing body of knowledge about the effects on climate change on the health of northerners. METHODS Study Design This was an exploratory qualitative study using the photovoice research method. 10 com�munity participants from across Nunavut, took part in the data collection and analysis phases of the study. Photovoice Photovoice (originally termed photo novella) has been referred to as a concept, an ap�proach, an educational tool, a participatory action research method, a participatory action tool, a participatory health promotion strategy, and a process (Wang & Burris, 1994, 1997; www.nunavut.arctichealth.ca 3 Wang, Yi, Tao, & Carovano, 1998). Rooted in the tenets of participation, empowerment, accessibility and self-documentation, photovoice is a technique by which to elicit commu�nity perspectives and capture everyday life experiences, through photography (Moffitt, 2004). Each of the community participants was given a camera, and asked to take photographs of what they understood to be the most important effects of climate change on health in the north. On completing this task, participants returned their cameras, and the photographs were printed. The photographs were then used as a mechanism to elicit individual per�spectives and experiences, and to engage participants in a group discussion about the ef�fects of climate change on health. Analysis In participatory analysis, emphasis is placed on process, and participants are made central to this process. In the present study, participants were asked to describe the rationale be�hind their photographs, and to share the stories, perspectives and experiences represented in these images. This process of analysis was facilitated by Pertice Moffitt, who used ques�tions to prompt the participants, such as: ‘what do you see here’; ‘how does this relate to our lives’; ‘is this a problem or strength’; ‘what can we do about this?’ These discussions involved individual story telling, as well as group dialog, and were all recorded. Participants were subsequently asked to find themes across the images, and to physically group the photographs into these themes. Participants were then asked to develop an ac�tion plan, through prompted, group brainstorming, in order to address some of the most salient issues emerging from these themes. FINDINGS Five themes emerged from analysis of the photovoice process. The themes included: the impacts of climate change on health; the transition from past climates to future climates; the necessary adaptation to the changing climate in the north; the call to action; and, re- flection on the past and changing knowledge systems. www.nunavut.arctichealth.ca 4 The Climate Change and Health Model The climate change and health model is a schematic representation of the themes that emerged through the photovoice process. Here, the placement of the themes around and within a circle, signifies interaction and overlap between ideas and messages. The theme of reflection and changing knowledge systems was identified as central to the relationship between climate change and health. Extending from this central concept, emerged the 4 subsequent themes of impacts, transition, adaptation and action. Reflection and Changing Knowledge Systems “We need to think about the past, reflect on our experiences and look forward to the future” Participants identified the theme of reflection and changing knowledge systems as central to the relationship between climate change and health. Participants saw the capacity to reflect on the past and preserve traditional knowledge systems as www.nunavut.arctichealth.ca 5 essential to coping with the effects of climate change on health. Additionally, the impor�tance of new knowledge about the changing environment and its implications on the land and in the community, was recognized, and participants saw the incorporation of new in�formation into traditional knowledge systems as essential to the management of the health effects of climate change. The Impacts of Climate Change on Health “We’ll being seeing more of this... more machines for sale. We won’t be able to use them any more when it warms up” The impacts of climate change on health was a theme that figured prominently in the participants’ group discussions and was identified as the most visible and tangible effect of climate change on health. Climate change was thought to impact health in six key ways. These included, the contamination of food, the contamination of water, changes in weather patterns, melting permafrost, isolation due to restricted mobility, and the loss of a way of life and livelihood. One participant reflected that the hunt for country food will be shaped profoundly by climate change. Communities will have to travel farther, in more dangerous conditions, and using different modes of transportation, in order to ensure food security and the maintenance of a traditional diet. The Transition from Past Climates to Future Climates “I feel vulnerable to the changes that may come. The snow is melting, the ice is melting. It will be different” The participants reported that the transition from cold to hot was a particularly salient theme for the North, where history, health and well being are so intimately associated with colder temperatures and climatic conditions such as snow and ice. Here, notions of change and transformation were discussed, and with these ideas emerged expressions of vulnerability. Participants discussed the sense of loss they feel is associated with climate change in the north. For many, this transition meant a loss of livelihood, a loss www.nunavut.arctichealth.ca 6 of tradition, and a loss of preferred activities such as snowmobiling, hunting, and camping. Necessary Adaptation “I took this picture because it shows we can recy�cle things. The old oil drum is being re-used to help hold up signs. There are many more ways we can recycle if we think about it” Building upon the conclusion that transition is nearly inevitable, the participants highlighted the importance of adaptation for health and well-being, in light of climate change. Participants proposed a variety of strategies to cope with climate change and reverse its ill effects. These included improving personal choices, promoting sustainability, discouraging waste, cleaning up our communities, and advocat�ing for hope and survival in the face of adversity. The Call to Action “In the north, it is often like we are stuck be�tween a rock and a hard place” One participant shared a picture of a sewage truck and told the story of a community that was forced to dump its sewage into the sea when the local river eroded during the spring melt, washed out the bridge and obstructed the arrival of the sewage-removal truck into the community. The contamination of sea-waters with sewage was a serious concern to com�munity members. This story was told by the participant to illustrate her feelings of being “stuck between a rock and a hard place”, since communities in the north often have few alternatives and thus little capacity to live more sustainably. Participants further indicated that geographic and environmental conditions in the north necessitate resource and energy intensive prac�tices, such as sea-lift shipment, air cargo and air-travel, and hinder environmentally friendly practices such as recycling. www.nunavut.arctichealth.ca 7 The ostensible paucity of environmentally favourable alternatives for communities in the north was deemed, by participants, to be a call to action. It was from this position that the group developed its action plan. “This bike is stuck in the snow. Our children will be stuck in the future, too. They are stuck with what we leave for them. If we do noth�ing, they will be stuck with our mess.” ACTION PLAN As evidenced by our findings, the perceived effects of climate change on health are varied and multifaceted. Accordingly, responsive action to these effects must transpire at multiple socio-ecological levels ranging from individual choices to community, municipal, provin�cial and federal strategies. The multi-lateral approach assumed in the participant’s action plan, reflects the multidimensional nature of the issue as well as the varied opportunities for adaptation, in the north. Individual Participants understood the action role of the individual as two-pronged. First, it was sug�gested that information and education are essential to ensuring that individuals are knowl�edgeable about the effects of climate change in the north, and that they are able to partici�pate in meaningful, informed decision making around these issues. Secondly, it was thought that individuals ought to be responsible for reducing consumption and living sus�tainably. Community At the community level, it was believed that planning and consultation were essential to ensuring successful management of the effects of climate change on health. Engaging communities in political action was deemed imperative. Additionally it was thought that mechanisms of redistribution, or community sharing, ought to be strengthened to ensure more equitable access to country foods. www.nunavut.arctichealth.ca 8 Territorial Participants highlighted the need for investment in waste management services, to ensure that recycling and compost programs have the capacity to operate throughout the territory. Further investment was deemed necessary in territorial search and rescue programs, given the increasingly unpredictable weather patterns and sea-ice traveling conditions. Corre�spondingly, engaging policy makers was seen to be essential to the promotion of environ�mentally friendly practices in Nunavut. National Participants believed that knowledge sharing, consciousness-raising and communication about the effects of climate change in the north ought to be strengthened. The conse�quences of unsustainable activities in the south, to climatic conditions in the north ought to be highlighted nation-wide, using more effective and more innovative strategies of com�munication. What is more, participants believed that national policy makers ought to en�force corporate accountability and ban the dangerous chemicals that contaminate country foods in the north. Finally it was thought that investment should be made, at a national level, into alternative energy sources and innovative, environmental practices. DISCUSSION Northern communities have figured prominently in recent research on climate change. However, little is known about the health effects of climate change in the north. What is more, community perspectives regarding these effects are largely absent from the literature. The findings in this study document the experience of a small group of community partici�pants in Nunavut. The 5 thematic areas identified by the participants in this study echo, for the most part, a larger body of evidence on climate change and health. Importantly, how�ever, the particular photographs, stories and messages that emerged through this research process reflect a unique, community perspective, rendering these findings particularly rele�vant to the north and significant for compelling community action around the issue of cli�mate change. Participants in this study conceptualized health and climate change broadly, but identified the theme of reflection and changing knowledge systems, as central to the relationship be�tween the two concepts. By engaging in a process of ongoing reflection, and by continu�ally incorporating new knowledge and experiences into traditional knowledge systems, it www.nunavut.arctichealth.ca 9 was believed that communities may be better able to adapt and to cope with the chal�lenges to health posed by climate change. It was in light of these ideas, that the 4 addi�tional themes emerged, and that the action plan was formulated. The results of this study, and in particular, the action plan formulated by the participants, suggest that community members can and should play an active role in identifying the health effects of climate change, and in developing appropriate responses to these effects. This study further highlights the importance of participatory research and the merits of the photovoice technique in eliciting community perspectives and promoting social action. It has been contended elsewhere that building social capacity, thereby empowering commu�nities to gain a sense of control, is essential to managing the health effects of climate change (Costello 2009). Our findings support this notion and suggest that an investment in community is an essential strategy for mitigating the ill effects of climate change on health. CONCLUSION This study contributes to the literature on perceived health effects of climate change in northern communities. While the health impacts of climate change are not yet fully under�stood, this study identifies a number of community priorities surrounding this issue. Fur�ther research and community consultation is needed to better understand the health impli�cations of climate change in the north, and to reduce health disparities in northern com�munities. As evidenced by this study, community engagement and participatory research is necessary to elicit community perspectives and to promote community action. Given the health threats posed by climate change, further work should be done to bolster community in�volvement around these issues and to actualize change at multiple socio-ecological levels. It is by strengthening capacity that northern communities will be able to cope with, and reverse, the effects of climate change on health in the north. www.nunavut.arctichealth.ca 10 REFERENCES Chan, M. (2008) How Climate Change Endangers Human Health. Statement by Dr Marga�ret Chan, Director-General of the World Health Organization, on World Health Day April 7, 2008. Costello, A., et al. (2009) Managing the health effects of climate change. The Lancet, 373 (9676): 1693-1733 Furgal, C.,& Seguin, J. (2006) Climate Change, Health and Vulnerability in Canadian Northern Aboriginal Communities. Environmental Health Perspectives, 114 (12): 1964- 1970. Healey, G.K. (2006). Community-identified Health Priorities for Nunavut. Iqaluit, NU: Qaujigiartiit/Arctic Health Research Network – Nunavut. Healey, G.K., Butler Walker, J., & Heron-Herbert, S. (2008). Health Research Ethics in Canada’s Northern Territories: A report. Iqaluit, NU: Qaujigiartiit Arctic Health Research Network Nunavut. Moffitt, P. & Vollman, A.R. (2004). Photovoice: Picturing the Health of Aboriginal Women in a Remote Northern Community. Canadian Journal of Nursing Research, 36(4): 189–201 Van Oostdam, J., et al. (2005) Human health implications of environmental contaminants in Arctic Canada: A Review. Science of the Total Environment, 352(352): 165-246. Wang, C., & Burris, M.A. (1994). Empowerment through photo novella: Portraits of partici�pation. Health Education Quarterly, 21(2): 171–186. Wang, C., & Burris, M.A. (1997). Photovoice: Concept, methodology, and use for participa�tory needs assessment. Health Education and Behavior, 24(3): 369–387. Wang,C.C.,Yi,W.K.,Tao,Z.W.,& Carovano,K. (1998). Photovoice as a participatory health promotion strategy. Health Promotion International,13(1), 75–86. www.nunavut.arctichealth.ca 11climate-change-and-environment
Inunnguiniq Parenting Program for NunavummiutLily Amagoalik

Describes the Inunnguiniq program origins and basic …

EnglishᐃᓄᒃᑎᑐᑦInunnguiniq Parenting Program for Nunavummiut Qaujigiartiit Health Research Centre Iqaluit, NU Qaujigiartiit is an independent, non-profit community research centre in Nunavut. We are Nunavummiut working to improve health in our communities through research, evidence, and action. The Inunnguiniq Parenting Program is the result of 5 years of research and consultation with many organizations and communities. Qaujigiartiit has piloted, and evaluated this evidence-based, culturally relevant parenting program over 4 years. The materials will be available in Nunavut for free. We have developed the Inunnguiniq program in response to requests from Nunavummiut for a culturally�relevant parenting program that focuses on our unique needs. There are 6 Modules in the program that focus on: 1) Living a Good Life; 2) Relationship Building; 3) Inunnguiniq- Teaching to the Heart; 4) Pilimmaksarniq; 5) Communication; 6) Healthy Family Nutrition. Much of the information in the program comes from the Nunavut Dept. of Education’s Elders Advisory Group and we are grateful to the elders who shared their words and the Dept. of Education for allowing us to print sections of their collections. Qaujigiartiit has worked with many partners to fulfill this need, including the Nunavut Dept. of Health, Nunavut Dept. of Education, Nunavut Tunngavik Inc., Public Health Agency of Canada, Health Canada, community wellness centres, and community organizations. What does the Inunnguiniq Program look like? The basic structure of the Inunnguiniq Parenting Program is : • Facilitator pairs offer the program together in English, Inuktitut and/or Inuinnaqtun. • The format is a strengths-based, group discussion design. Each session begins with a central topic that is discussed through a range of activities over 2-3 hours. • The target audience is parents/care-givers/foster parents/extended family. Anyone who cares for children full- or part-time. This is NOT a program for just ‘high-risk’ parents, but ALL individuals who care for children. Group size should be approximately 8-10 people. • Inunnguiniq is not a counseling program. We encourage those who want counseling to contact their local health centre. • The program consists of 6 modules taught over 18 sessions (offered 1-3 times/week depending on facilitator comfort/availability) • Each session is to include an elder if possible. In some cases, dvds of elders speaking or telling stories are incorporated into sessions where elders are not available or are not comfortable speaking on a topic. • Each program is to incorporate land components in a minimum of 1 session, but can expand to more. The entire program can be offered on the land if people wish. • The parenting program must provide childcare at each session to support parents who wish to attend. • Each session must incorporate a food component (a snack break). The snack must be nutritious and should be country food when availability allows. Recipe ideas are included in the curriculum. For more information contact Lily Amagoalik, Family Health Research Coordinator lily.amagoalik@qhrc.ca, 867-975-2523child-and-youth
CHILD AND YOUTH MENTAL HEALTH AND WELLNESS Intervention, Research and Community Advocacy Project in NunavutTeri Lindsay, Gwen K. Healey

Exploring the perspectives of frontline mental health workers in …

Englishᐃᓄᒃᑎᑐᑦ2012 EXPLORING THE PERSPECTIVES OF FRONTLINE MENTAL HEALTH WORKERS IN NUNAVUT CHILD AND YOUTH MENTAL HEALTH AND WELLNESS Intervention, Research and Community Advocacy Project in Nunavut This report was prepared by: Teri Lindsay Teri Lindsay Consulting Whitehorse, YT and edited by: Gwen K. Healey Executive and Scientific Director Qaujigiartiit Health Research Centre Iqaluit, NU gwen.healey@qhrc.ca October 2012 This report can be referenced in the following way: “Lindsay, T. and Healey, G.K. (2012). Exploring the Mental Health of Mental Health Frontline Workers in Nunavut. Qaujigiartiit Health Research Centre, Iqaluit, NU. Table of Contents SUMMARY ...........................................................................................................2 INTRODUCTION ..................................................................................................2 SCOPE .................................................................................................................3 Target Group ................................................................................................................. 3 Definitions...................................................................................................................... 3 METHODS ...........................................................................................................3 Interviews ....................................................................................................................... 3 Review of Literature .................................................................................................. 3 DESCRIPTIVE FINDINGS .....................................................................................4 Challenges..................................................................................................................... 4 Communication within Division or Department ........................................................... 4 Role Clarity.................................................................................................................... 4 Confidentiality............................................................................................................... 4 Support for “Non-acute” Children ............................................................................... 4 Need for Support and Relief......................................................................................... 5 Lack of Continuity or Permanency................................................................................ 5 Successes ........................................................................................................................ 5 Providing Support to children who are outside of the school system......................... 5 BEST PRACTICES .................................................................................................6 Early Intervention ...................................................................................................... 6 Holistic Service Coordination................................................................................ 6 Establishing and Maintaining Interagency Information Sharing............7 Empowerment, skill-development for children, youth, and families......7 Culturally Safe Relational Practice .....................................................................7 Professional Development.......................................................................................7 Clinical Supervision.....................................................................................................7 REFERENCES ......................................................................................................8 1 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS EXPLORING THE PERSPECTIVES OF FRONTLINE MENTAL HEALTH WORKERS IN NUNAVUT SUMMARY The Qaujigiartiit Health Research Centre Child and Youth Mental Health Intervention, Research and Community Advocacy Project in Nunavut are in year two of the project. “Child and Youth Mental Health 2011” was conducted during the period of June 2011 to December 2011. In January 2010, the Qaujigiartiit Health Research Centre undertook a Child and Youth Mental Health Services Needs Assessment. This report is available at www.qhrc.ca. In the preparation of this report, it was determined that the perspectives of frontline mental health workers were needed to complete a more complete picture of the current delivery of mental health services to children and youth in Nunavut. In June 2011, the Honourable Peter Ma, Deputy Minister of Nunavut Health and Social Services, announced the partnering of the Department of Health and Social Services with Qaujigiartiit Health Research Centre to implement part of the Child and Youth Mental Health and Wellness Research project that is related to access to services in Nunavut. The Deputy Minister encouraged Mental Health Workers, Social Workers, and Wellness Workers (and like positions) to participate in the research and survey on positive mental health indicators. The report provides perspectives of frontline mental health workers who are engaged with children and youth who agreed to participate in the research project. INTRODUCTION The purpose of this report is to communicate the results of the data collected for the Child and Youth Mental Health Intervention, Research and Community Advocacy Project in Nunavut at the Qaujigiartiit Health Research Centre. The specific goals of this project have been to: 1) Interview key informants from a sub-selection of the survey respondent tool and provide a narrative summary of experiences of frontline workers; and 2) Explore best practices for frontline workers in this and other jurisdictions. 2 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS INTERVENTION, RESEARCH AND COMMUNITY ADVOCACY PROJECT IN NUNAVUT SCOPE This report document review, sub-selection of service provider interviews, and a search of the grey literature. Target Group Government and non-government service providers who offer mental health services to children and youth up to nineteen (19) years of age both male and female. Data collection and deliverables are based on the Dept. of Health and Social Services’ division on services among four regions and their communities: Kitikmeot; Kivalliq; Iqaluit; and Qikiqtaaluk. Definitions Mental Illness Defined in a diagnostic context as a “disorder”. i.e. Attention-Deficit/Hyperactivity Disorder (ADHD); Personality Disorder; Psychotic Disorders such as Schizophrenia; Post Traumatic Stress Disorder; etc. Mental Health and Wellness have been used interchangeably and can be defined as: A holistic approach to “well-being” - in an ecological (interrelated) context - emotional, spiritual, cultural, physical, self, and community. Mental Health is also used to describe reactive counseling services and interventions not necessarily reflective of diagnosed disorders. Wellness generally refers to proactive interventions to maintain “well-being”. Mental illness may be compounded by mental health issues (suicide ideation, depression, etc.) along with concurrent problems of substance misuse (alcohol, marijuana, solvent abuse, etc.). METHODS The method for data collection included the following elements: Interviews 10 telephone interviews with frontline mental health workers in Nunavut who consented to participate. Review of Literature A review of related policy documents, strategic plans, and scholarly and grey literature. 3 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS EXPLORING THE PERSPECTIVES OF FRONTLINE MENTAL HEALTH WORKERS IN NUNAVUT DESCRIPTIVE FINDINGS Challenges Communication within Division or Department Interviews revealed frontline workers found interdepartmental communication and department program silos as obstacles in their practice. Participants felt information, such as the Nunavut Suicide Prevention Strategy and accompanying action plan, had not been communicated or was inefficiently disseminated by superiors. Information sharing between different departments and/or programs appeared to be a consistent source of frustration for participants in this research project. Role Clarity Frontline workers felt there was confusion over the responsibility for service provision. For example, social workers are involved with children and youth for the purposes of child protection and are given clear direction from their superiors to not provide mental health services. However, mental health workers reported that they felt they did not have the expertise to work with children and youth and felt it was the responsibility of the social worker to work with this population. Confidentiality Community social services, child protection and interagency or interdepartmental family violence programs require particular attention with regards to confidentiality. It was felt that the parameters purpose of confidentiality need to be defined to facilitate or enhance services for children moving from one program to another. Several respondents indicated they would like to see a mechanism to share information between services and departments. They expressed frustration with specific situations, for example, the development of case plans. When developing case plans, multiple programs or departments may be involved with any given child’s case plan. However, limited information is shared between agencies about a child’s access to other programs across departments. Respondents felt that the government departments of Education, Social Services, Mental Health, and Justice are working in isolation of one another and information sharing is limited because of the perceived need to protect confidentiality outside of one’s department. Developing unified interdepartmental protocols for the collection, use and disclosure of case information could assist in interagency collaboration between organizations and promote solution-focused strength-based case management for the benefit of children. Support for “Non-acute” Children Respondents indicated support for assessing, diagnosing and treating acute mental health problems is available through the array of out-of-territory treatment programs, specialist counselors, and other resources. However, they highlighted that they experience challenges addressing non-acute issues, offering programming, and accessing funding 4 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS INTERVENTION, RESEARCH AND COMMUNITY ADVOCACY PROJECT IN NUNAVUT that could contribute to prevention and promote protective factors. If a child/youth is not in protective care or in the care of the Director of Child and Family Services, one respondent said “it can be crazy-making and a waste of time trying to figure out who is going to pay [for support services]” if a child needs to be sent out of territory for support. Further comments included frontline worker feeling the system “is failing miserably”, and the needs of children are not being met. Need for Support and Relief Respondents felt they are trying to respond to the needs of children and youth but are facing serious barriers and limitations to what they can provide given the wide range of issues children and youth are facing in Nunavut communities. It was felt among the respondents that mental health and wellness needs or children and youth are not being met because frontline workers are often handling more cases than they should because of staff shortages. This leads to ‘burnout’ among frontline workers and high rates of turnover. It also leaves little opportunity to engage in preventive activities or professional development. Additionally, frontline workers reported that they are engaged in this work because of their love for children. Because of this, the severity of the cases they see in their work can affect them personally. They reported a perception that there is little support for addressing their own mental health needs when they are working with emotionally difficult cases. Lack of Continuity or Permanency Respondents perceived lack of continuity/ permanency to have a profoundly negative impact on children and youth including depression, behaviour problems, and relationship difficulties. Frontline workers felt that resources, stability, and permanency planning are very challenging in their work. Resources can come and go with funding. Some children are moved back to their family home without adequate follow up or support, which they feel often results in the child returning to protective care or remaining in a high risk and potentially dangerous environment. Permanency planning or case management is made difficult by the constant turnover in staff and lack of information shared among service providers. Successes Providing Support to children who are outside of the school system Many children and youth who require an intervention or support are not in the school system either as a result of their age or non-attendance. Some respondents to the telephone interview questions did indicate mental health workers who work with the youth in the community are helpful. 5 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS EXPLORING THE PERSPECTIVES OF FRONTLINE MENTAL HEALTH WORKERS IN NUNAVUT BEST PRACTICES A best practice is a technique, activity or methodology that research has proven to produce outstanding results that may be modified and adapted. Based on literature reviews and respondent input, adaptions of the suggestions below may improve services and provide greater support to service providers in Nunavut. Inunnguiniq – the shared responsibility within the group or the notion that “it takes a village to raise a child” (Tagalik, 2010) is a cultural principle that could be a guiding framework for services geared for children and youth. It is common practice in the child and youth care field to work with children from an ‘ecological perspective’ - an approach that examines how a child interrelates with their environment. The Inuit worldview sees the individual as part of an interconnected space bringing together people, land, and spirit. These approaches are aligned. Interventions for children and youth with mental health and wellness needs are more likely to be effective if they are encompassing of the whole self, are holistic, and incorporate Inuit worldviews and philosophies. The best practices identified below are interrelated and are reflective of a holistic approach that will be required to promote and address mental health and wellness among children and youth. Early Intervention Early intervention with children, youth and their families can decrease or eliminate the manifestations of some mental disorders (World Health Organization, 2005). Supporting early childhood programs that focus on home visitation and community-based programming can provide support for parents and assist in identifying families that may benefit from additional supports. Holistic Service Coordination The coordination of services across the spectrum needs to be a foundational treatment approach. A model that recognizes the Spiritual (connectedness); Physical (shelter, food, exercise); Emotional (acceptance, understanding, recognition, limits,); and Intellectual (concepts, thoughts) needs of children and families in Nunavut was highlighted by many service providers in this research, and supported by the literature. Service coordination can also be improved by recognizing that children cannot be treated in isolation. Children are part of a family and a community, and a service model that is reflective of this, such as the Wraparound Initiative (Bruns et al, 2004) would be beneficial for Nunavut families. Support, education, programing, and treatment need to reflect the interconnectedness of the child’s world. 6 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS INTERVENTION, RESEARCH AND COMMUNITY ADVOCACY PROJECT IN NUNAVUT Establishing and Maintaining Interagency Information Sharing Interagency collaboration to define the parameters for information sharing is needed. A shared information system, policies, or guidelines could assist with multiagency overlap and service delivery, and reduce redundancy. Multidisciplinary collaboration and information sharing are crucial elements in maintaining fluidity and seamless transitions between services. Empowerment, skill-development for children, youth, and families When children are treated with respect and provided with opportunities to build skills, they develop agency over their lives. This is a critical indicator in mental health and wellness. Opportunities to engage children and youth in opportunities to build social skills; develop positive peer relationships; explore self�reflection and self-control; develop problem solving skills; and emotional awareness can complement the goals of other services and programs children might be accessing. Parents also require support and opportunities to build skills that foster healthy child development, communication, and agency. Culturally Safe Relational Practice Services that are culturally-relevant and respectful ensure that children, youth and families feel understood, and valued and respected for who they are. There is a need to recognize define and explore ‘cultural safety’ moving beyond simple ‘cultural awareness’ and analyze power imbalances, foundational principles, colonization and colonial relationships. Professional Development Staff identified the need to be granted more access to professional development opportunities to ensure they have the expertise to deliver programs on a range of topics, but highlighted Inuit Qaujimajatuqngit (IQ). Training opportunities that are open to others in the community and non-government sector could assist with capacity building throughout communities. Clinical Supervision Clinical supervision can be more than an administrative task. It can be a shared opportunity for front line workers and their supervisors to develop and maintain productive, goal-orientated relationship, the purpose of which is to enhance and evaluate service delivery. Individual learning plans for frontline staff that outline goals and objectives (short and/or long term) may assist in the evaluation of staff learning and direction. Learning plans can be responsive to an individual skill set, areas for development, with a focus on organizational values, mission and vision. 7 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS EXPLORING THE PERSPECTIVES OF FRONTLINE MENTAL HEALTH WORKERS IN NUNAVUT REFERENCES Brown, I. (2003, Spring). Mental Health and Wellness in Aboriginal Communities. Retrieved August 2011, from National Indian & Inuit Community Health Representatives Organization - In Touch: http://www.niichro. com/2004/pdf/INtouch/in-touch-vol-26.pdf Bruns, E.J., Walker, J.S., Adams, J., Miles, P., Osher, T.W., Rast, J., VanDenBerg, J.D. & National Wraparound Initiative Advisory Group (_004). Ten principles of the wraparound process. Portland, OR: National Wraparound Initiative, Research and Training Center on Family Support and Children’s Mental Health, Portland State University. Cunningham, A., & Baker, L. (2007). Little Eyes, Little Ears. How Violence Against a Mother Shapes Children as they Grow. London, Ontario, Canada: The Centre of Child and Families in the Justice System. Fraser, S. (2011). Children, Youth and Family Programs and Services in Nunavut. Ottawa: Office of the Auditor General of Canada. Government of Nunavut; Nunavut Tunngavik Inc.; Embrace Life Council: Royal Canadian Mounted Police. (2011). Nunavut Suicide Prevention Strategy Action Plan. Hebert, P. C., & MacDonald, N. M. (2009). Health care for foster kids: Fix the system, save a child. Canadian Medical Association Journal, vol 181. Mental Health Commission of Canada. (2009, November). Toward Recovery and Well Being A Framework for A Mental Health Strategy For Canada. Retrieved December 2011, from Mental Health Commission of Canada: http:// www.mentalhealthcommission.ca/English/ Pages/Reports.aspx Nauert PhD, R. (2009, May 22). Mental Health After Child Abuse. Retrieved January 21, 2012, from Psych Central: http://psychcentral.com/ news/2009/05/22/mental-health-after-child�abuse/6043.html Tagalik, S. (2009-2010). Inunnguiniq: Caring For Children The Inuit Way. Retrieved December 3, 2011, from National Collaborating Centre for Aboriginal Health: http://www.nccah-ccnsa.ca/ docs/fact%20sheets/child%20and%20youth/ Inuit%20caring%20EN%20web.pdf World Health Organization. (2005). Child and Adolescent Mental Health Policies and Plans. Retrieved November 2011, from Mental Health Policy and Service Guidance Package: http:// www.who.int/mental_health/policy/Childado_ mh_module.pd 8 CHILD AND YOUTH MENTAL HEALTH AND WELLNESS INTERVENTION, RESEARCH AND COMMUNITY ADVOCACY PROJECT IN NUNAVUTchild-and-youth
Child and Youth Mental Health Intervention, Research and Community Advocacy Project in NunavutTeri Lindsay, Gwen K. Healey

An article about the purpose of the project to develop, implement, and evaluate, child and youth mental health and wellness interventions in Nunavut that focus on northern and community-based ways of understanding and knowing about healthy children and …

EnglishᐃᓄᒃᑎᑐᑦChild and Youth Mental Health Intervention, Research and Community Advocacy Project in Nunavut Child and Youth Mental Health Services in Nunavut Needs Assessment Qaujigiartiit Health Research Centre 2010 2 Prepared for and edited by: Gwen K. Healey Executive Director Qaujigiartiit Health Research Centre (AHRN-NU) P.O. Box 11372 Iqaluit, Nunavut X0A 0H0 gwen.healey@arctichealth.ca Prepared by: Teri Lindsay Teri Lindsay Consulting 5B Iron Horse Drive Whitehorse, Yukon Y1A 6T4 T: (867) 456-4511 F : (867) 456-4511 C : (867) 334-2145 terilindsay@whtvcable.com Please Reference this paper using the following: “Qaujigiartiit Health Research Centre (2010). Needs Assessment of Child and Youth mental Health Services in Nunavut. Iqaluit, NU: Qaujigiartiit Health Research Centre” Funding for this review was made possible by the Public Health Agency of Canada’s Innovation Strategy. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 2 3 Table of Contents 1. INTRODUCTION ..................................................................................................................5 2. SCOPE ......................................................................................................................................5 3. METHODOLOGY .................................................................................................................6 4. FINDINGS ..............................................................................................................................7 Nunavut Programs and Services ...................................................................................................7 Health and Social Services ............................................................................................................9 Mental Health and Wellness ........................................................................................................11 Justice 13 Education ....................................................................................................................................14 Non-Government Organizations .................................................................................................16 Federal Initiatives ........................................................................................................................17 Other Initiatives ..........................................................................................................................18 Programs in Other Juristictions ...................................................................................................19 5. SOCIAL DETERMINANTS ................................................................................................22 Overcrowded Housing .................................................................................................................22 Food Security ..............................................................................................................................22 Education ....................................................................................................................................23 Maternal Disadvantage ................................................................................................................24 Residential School and Other Trauma ........................................................................................25 6. PROGRAM SERVICE GAPS .............................................................................................25 7. BEST PRACTICES ..............................................................................................................28 Appendix A --- Nunavut Programs and Services Database ......................................................33 Appendix B --- Out of Territory Programs and Services Database .........................................38 Appendix C --- Regional Program Questionnaire .....................................................................41 Appendix D --- Hamlet Program Questionnaires ......................................................................41 Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 3 4 SUMMARY The “Child and Youth Mental Health Services in Nunavut Needs Assessment 2010” was conducted during the period of February 2010 to June 2010. It is one component of a 4- component program of research, intervention and community advocacy around child and youth mental health and wellness in Nunavut developed and implemented by Qaujigiartiit Health Research Centre. This is the initial phase of what is hoped will be a multi-year program in child and youth mental health and wellness research and interventions. Due to resources available at this time, the assessment is limited to an environmental scan, questionnaires, and a literature review. Assessing the impact of programs and services available across Nunavut would involve lengthy interviews and focus groups with agencies, clients, and communities, which is, at this time, prohibitively expensive. Furthermore, the project is in the first stage of a multi-year work plan and the results of this initial work will be evaluated by the the advisory group for this project and next steps will be decided upon by the group. The support received from the participation of the various agencies and departments across Nunavut was greatly appreciated. Telephone questionnaires were implemented with various programs and services. The information collected at the community level was important in developing the findings and identifying gaps, needs and tends. In order to verify the quality of the data collected, the draft report was sent to various stakeholders and mental health services in August 2010 for comment. No comments were provided. Therefore this report is reflective of the information we were able to gather during this initial review phase of the project, and it is our hope that the information will continue to grow over time. The analysis of agency program questionnaires and a literature review of material from territorial organizations supported the finding that although Nunavut continues to grow and develop as a territory there is room for improved program service delivery. Child and youth mental health program and service delivery are generated through both the Government of Nunavut (GN) and municipal levels. Children and youth affected by mental illness and issues interrelate with several government and non government organizations such as: Health and Social Services; Justice; Education; hamlet programs; as well as territorial initiatives. There are a number of key determinants that influence mental health such as: housing; income; education; community resources; social interactions; the individual; as well as the implications of related factors with child protection; youth criminal justice; and education (Mussell, Cardiff, & White, 2004). The risk factors and the protective factors of the individual and their community play a pivotal role in achieving the maximum positive outcome of support for the individual (Waddell, 2002). Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 4 5 1. INTRODUCTION Teri Lindsay of Teri Lindsay Consulting is pleased to submit this report for the “Needs Assessment of Child and Youth Mental Health Services in Nunavut”, component three of the Child and Youth Mental Health and Wellness Intervention, Research and Community Advocacy Project in Nunavut. The purpose of this report is to communicate the results of the environmental scan of child and youth mental health programs and services in Nunavut; resources utilized outside of the territory; and other jurisdictional best practices and program solutions that may be modified for Nunavut. The specific objectives met by the assessment include: o Determine scope of the needs assessment (limited to services, programs, organizations, etc.) and highlighted issues (child protective custody, suicide prevention, social services, counselling etc.) with territorial advisory committee; and o Conduct environmental scan of child and youth mental health services available in Nunavut and those that are provided to Nunavummiut outside of territory. Create a database of information; and o Collect baseline data of the use of services: descriptive statistics, articles, media stories, etc., to highlight gaps in services; and o Conduct environmental scan of child and youth mental health programs available in Nunavut and those that are provided to Nunavummiut outside of the territory. Create database of information; and o Synthesize information highlighting available supports and services; identified gaps in service provision; best practices for meeting needs in other jurisdictions that might be useful in Nunavut. 2. SCOPE The action plan for the Needs Assessment of Child and Youth Mental Health Programs and Services in Nunavut is based on two phases, providing a scaffolding approach to gathering accurate data. The preliminary phase involved gathering regional data bases, internet searches, and contacting programs via telephone to develop a territorial profile of child and youth mental health/wellness programs and services in each of the 25 communities in Nunavut. The second phase involved interpreting the information gathered; examining practice patterns; exploring demographics; behavioural and risk factors; analysing identified patterns, trends, and gaps; and identifying needs. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 5 6 Definitions for the purposes of this paper: Mental Illness: Defined in a diagnostic context as a “disorder”. i.e. Attention-Deficit/ Hyperactivity Disorder (ADHD); Personality Disorder; Psychotic Disorders such as Schizophrenia; Post Traumatic Stress Disorder; etc.. It should be noted mental illness can be compounded by mental health issues (suicide ideation, depression, etc) along with concurrent problems of substance misuse (alcohol, marijuana, solvent abuse, etc). Mental Health and Wellness have been used interchangeably and can be defined as: A holistic approach to “well being” - in an ecological (interrelated) context - emotional, spiritual, cultural, physical, self, and community. Mental Health also describes reactive counselling services and interventions not necessarily reflective of diagnosed disorders. Wellness generally refers to proactive interventions to maintain “well being”. Target Group: children and youth are defined as male and female – children aged three (3) to twelve (12) years of age; and youth aged thirteen (13) to nineteen (19) years of age. Data collection and deliverables are based on Nunavut’s three regions: Kitikmeot; Kivalliq; and Qikiqtaaluk. 3. METHODOLOGY Methodology for data collection includes the following elements: Background Research - Internet research related to the experience of Inuit child and youth mental health programs in Nunavut; other Canadian and selected international jurisdictions child and youth mental health programs; and identified best practice approaches. Stakeholder Questionnaires – GN regional program managers and selected frontline staff; non-government organizations (NGO’s); and territorial organizations/committee chairs were contacted to complete verbal questionnaires. The guidelines assisted in gathering data for in territorial services; out of territorial programming; and program database collection. The guidelines are attached (appendix A and B). Questionnaires were completed by 32 stakeholders during the process and are summarized in Table 1 below: TABLE 1 - QUESTIONNAIRES Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 6 7 Number Questionnaire Requests Questionnaire Declined or Not Available TOTAL Questionnaires GN Education 4 1 3 GN Justice 1 0 1 GN Mental Health and Wellness 20 11 9 GN Social Services 16 5 11 Non-Government Organizations 10 4 6 Territorial Organizations/Committees 3 1 2 TOTALS 55 23 32 4. FINDINGS Nunavut Programs and Services The Kitikmeot, Kivalliq, and Qikiqtaaluk regions reflect similar programs with diverse service delivery. For example the GN provides Health and Social Services; Justice; and Education programs to each community, however the delivery of services is dependent on the size of the community; the number of positions actually filled; and the expertise of the individual filling the position. Although some Hamlet programs receive funding from the GN they are in large dependent on proposal driven programs and services. The recent federal decision not to provide funds through the Aboriginal Healing Foundation beginning April 1, 2010 has dramatically impacted service delivery at the grassroots level for 13 communities across Nunavut. The communities had provided services not only to residential school survivors but intergenerational survivors including children and youth dealing with mental health issues impacted by residential school syndrome. Hamlet programs are now scrambling to submit new proposals. Health Canada has committed $199 million dollars to mental health and emotional support services for survivors and their families which will go towards government run programs. According to the Nunavut Bureau of Statistics, in 2009, approximately 42% of Nunavut’s population was nineteen years of age and younger (Statistics, 2009). It was unanimously noted that treatment or diagnostic territorial programs specifically for children and youth with mental illness and/or issues simply do not exist in Nunavut. Other than first episodic assessment and crisis intervention there are no identified child and youth mental health territorial services. Mental health assessments are determined through health services such as nurses, doctors, psych nurses, mental health consultants, psychiatrists, or Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 7 8 out of territorial agencies. Psychiatrists are the only professionals who can prescribe medications other than doctors, however doctors do not have specialized training in mental health. Crisis interventions occur at a multi-service levels including: social workers, nurses, teachers, RCMP, and mental health professionals. The lack of program delivery and specific child and youth service implementation may contribute to children and youth being underserved, undiagnosed, and/or placed in southern jurisdictions treatment facilities. Nunavut Child and Youth Population Estimates – July 2009 TABLE 2: KITIKMEOT REGION Communities Total Population Total Child and Youth Population Age 0-4 Age 5-9 Age 10-14 Age 15-19 Cambridge Bay 1,601 612 158 155 163 136 Gjoa Haven 1,121 535 136 141 136 122 Kitikmeot unorganized 24 4 1 2 1 0 Kugaaruk 725 366 95 97 90 84 Kugluktuk 1,396 546 139 130 131 146 Taloyoak 857 404 103 121 89 91 (Statistics, 2009) TABLE 3: KIVALLIQ REGION Communities Total Population Total Child and Youth Population Age 0-4 Age 5-9 Age 10-14 Age 15-19 Arviat 2,254 1,109 313 303 265 228 Baker Lake 1,906 856 217 197 231 211 Chesterfield Inlet 366 148 38 41 43 26 Coral Harbour 838 422 121 114 93 94 Kivalliq unorganized 0 0 0 0 0 0 Rankin Inlet 2,651 1,122 279 299 281 263 Repulse Bay 844 420 132 118 77 93 Sanikiluaq 794 369 86 90 114 79 Whale Cove 388 192 61 52 41 38 (Statistics, 2009) TABLE 4: QIKIQTAALUK REGION Communities Total Population Total Child and Youth Population Age 0-4 Age 5-9 Age 10-14 Age 15-19 Arctic Bay 728 335 84 78 71 102 Cape Dorset 1,366 590 152 122 157 159 Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 8 9 Clyde River 895 395 103 103 100 89 Grise Fjord 150 68 10 22 19 17 Hall Beach 702 336 86 83 93 74 Igloolik 1,639 816 247 204 184 181 Iqaluit 6,832 2,133 541 500 545 547 Kimmirut 444 187 48 45 44 50 Pangnirtung 1,443 631 162 156 166 147 Pond Inlet 1,424 647 172 152 156 167 Qikiqtaaluk unorganized 6 0 0 0 0 0 Qikiqtarjuaq 521 193 41 46 51 55 Resolute 250 107 19 35 24 29 (Statistics, 2009) Health and Social Services The GN is responsible for delivery of health and social services programs through the Department of Health and Social Services. Programs include but are not limited to child protection; mental health; and wellness. Child Protection – Is a legislated program that falls under the Director of Child and Family Services and is implemented by community social service workers. Social workers identify high risk children and their families; investigate child protection concerns; and provide services to reduce risk to children. Children and youth are categorized by age from birth up to and including 18 years. Social workers typically only interact with children/youth and their families in the context of child protection. Nunavut MLA’s have indicated their desire to work on new child and family service law during their term to better meet the needs of Nunavummiut. The current legislation was carried over from the Northwest Territories after Nunavut became its own territory in 1999. TABLE 5: NUNAVUT CHILDREN IN CARE - MARCH 2009 Legal Status Number of Children Voluntary Support Agreement 119 Plan of Care Agreement 87 Support Services 32 Temporary Wards 13 Permanent Wards 61 Between legal status or court Pending 63 Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 9 10 Total 375 (Services, 2009) The Director of Child and Family Services Annual Report of 2008-2009 indicates that a typical social services day across Nunavut involves services being provided to approximately 375 children (See Table 5). The services provided can include several types of agreements to reduce risk for children and youth. Court-ordered protective services, such as temporary and permanent wards, place children with foster families. Specific data reflecting mental illness and issues in correlation to child protection is not available. In this case, the services provided suggests there is likely an impact on child mental health among the children taken into protective custody, as all children taken into custody are witnessing violence; experiencing post traumatic stress; physical, emotional, sexual abuse; and/or neglect. Agreements and/or Orders are utilized to provide service to families. Services can include: residential treatment; counselling services; community supports; and foster homes: • Voluntary Support Agreements - are an agreement between the Government of Nunavut and the parents of the child(ren) who require support. Support can include but are not limited to: counselling; in-home support; respite care; services to improve the family’s financial situation; services for improving the family’s housing; drug or alcohol treatment; mediation disputes; services to assist the family to deal with the illness of a child or family member; or other services agreed on my the Director. Either party can terminate the agreement. • Plan of Care - is a plan of service for a child who has been deemed in need of protection and has been identified in section 7(3) of the Child and Family Services Act. In this situation the parent concurs with the social worker that the child is in need of protection and the parent agrees to work with social services to reduce the risk to the child. The plan of care process is outside of the judicial system and the agreement can last for no longer than two consecutive years. • Temporary Wards - are children who have been deemed in need of protection that the Court has placed in the custody of the Director of Child and Family Services for no longer that a consecutive two years. • Permanent Wards - are also children the Court has placed in the custody of the Director until the child has attained the age of sixteen (in some cases extended to and including the age of 18) Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 10 11 • Support Services Agreements - is a voluntary agreement between the Government of Nunavut and a youth aged 16 to 19 who cannot reside at home for reasons that would put the youth in need of protection. At times due to lack of resources or specfic training, children and/or youth need to be placed out of the territory for specialzied treatment or services such as behavioural treatment facilities; solvent abuse programs; group homes, medically fragile care homes, and special needs foster homes. In March 2009, 45 children were in out-of-territory placements (see Table 6). TABLE 6: OUT OF TERRITORIAL PLACEMENTS - MARCH 2009 Placement Number of Children Foster Care 2 Medical Care 1 Therapeutic Group Homes (residential treatment services for children and youth with emotional/behavioural problems and/or disturbances) 29 Alternative Care/Medical Homes 8 Specialized Foster Care 5 Total 45 (Services, 2009) Mental Health and Wellness The Department of Health and Social Services currently operates a Mental Health and Wellness Unit. The Unit is responsible for culturally approriate continuum of mental health and addictions services across Nunavut. It is designed to integrate community, territorial, and federal mental health initatives. The premise of the intergration is to work on collaborative planning in each of the communities to implement a multidisciplinary Community Wellness Strategy for Nunavut. The Community Wellness Strategy examines the determinants of health in a multi-layered or interconnected approach taking into consideration the community, resources, leadership, Elders, issues, community strengths, and government and non-government organizations. The unit is in the early stages of development. The current structure of mental health and wellness services includes health care providers such as mental health nurses, wellness counsellors, mental health consultants, mental health and addictions workers, (Services, 2009) and child and youth outreach Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 11 12 workers. However, it should be noted not all communities have the same positions. For example, smaller communities may have contract mental health nurses or contracted consultants that are in the community on a short term basis. Most communities do not have child and youth outreach workers and their roles and responsibilities vary in each region. Community health nurses (CHNs) often provide mental health services in the absence of other professionals, including conducting suicide risk assessments. Service delivery for children and youth may also be dependant upon individual expertise and the comfort level of the professional with the topic at hand. With the exception of first episode diagnostic intervention, children and youth are referred to social services. Social workers are not trained to make diagnostic assessments so they work collaboratively with other professionals in the community and/or resource people outside of the community to detmerine the best plan of care of the child/youth. Nunavut’s Mental Health and Wellness Unit and community wellness strategy have yet to be evaluated (at the time of this report). An intergrated systems approach to already existing services could streghten services and build capacity for individual communities to address and guide their unique needs for mental health and wellness. Finding current statistical data related to child and youth mental health issues and illness proved challenging. Efforts made to retrieve data from the GN were unsuccessful during the short duration of this needs assessment. In 2008, Nunavut’s chief coroner, stated there were 24 suicides in Nunavut (CBC News, 2008). Examining the data retrospectively to the year 2000, there were roughly 26 to 29 suicides per year, with one tragic year reporting 37 suicides (CBC News, 2008). From April 1, 1999 to August 29, 2005 there were a total of 177 suicides in Nunavut. In a report from Taravat Ostovar McGill Group for Suicide Studies “Suicide among Aboriginal Population of Canada: Social and Spiritual Determinants” the group identified 59 deaths by suicide in Nunavut under the age of 20 for the period of 1999 -2004 (Table 7) (McGill Group for Suicide Studies, McGill University, 2007). TABLE 7: NUNAVUT CHILD AND YOUTH DEATHS BY SUICIDE 1999 -2004 Sex Age 10 - 14 Age 15 - 19 Total Male 2 49 51 Female 3 5 8 Total 5 44 59 The McGill Group showed the highest age cohort for completed suicides in Nunavut between 1999 and 2004 were youth aged 15 to 19. The group further reported that Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 12 13 factors related to suicide events included psychiatric illness co-morbidity; family history; life stressors; substance use/abuse; depression; personality disorder/traits; past suicidal behaviours; relationship difficulties; problem-solving and coping skills; and access to services, social support and networking (McGill Group for Suicide Studies, McGill University, 2007; Law & Hutton, 2007). One professional surveyed during this project shared their perception that youth are presenting increasingly with drug-induced psychosis, which occurs while the individual is either under the influence of a drug or during withdrawal from a drug after the individual stops using. Research shows that half of all life time cases of mental illness begins by age 14 (National Institute of Mental Health, 2009). “There are a number of other studies that support the hypothesis that adverse childhood experiences have a strong impact in mental health during a person’s adolescent and young adult years…” (Hicks, 2007). Mental health professionals in Nunavut who responded to requests for information for this paper reported that they are seeing an increasing number of youth displaying signs of post traumatic stress disorder (PTSD). Children/youth who have undergone major changes in their life, experienced trauma, and/or witnessed or experienced abuse may display signs of PTSD. It was further stated by individuals contacted across the territory that the service needs of children and youth with mental health issues are not currently being met in Nunavut. Justice Research suggests incarcerated youth show a higher prevalence of mental illness than the general population (Canadian Institute for Health Information (CIHI), 2008). Some risk factors associated with criminal activity include low self esteem; hyperactivity; aggression; victimization; negative parenting styles; lack of school involvement; schizophrenia; and substance related disorders (CIHI, 2008). The Nunavut Department of Justice manages corrections and community justice programs for Nunavut youth aged 12 through 17 who become involved with the justice system through the Youth Criminal Justice Act. Youth are referred to Community Justice Committees for pre-charge and court diversion summary offences. There are no programs within the services provided by the Dept. of Justice that specifically address youth mental illness or mental health issues. However the Nunavut Family Abuse Intervention Act has provision to address violence between an applicant and a respondent 14 years of age and older, whether charges are impending or not (see Act for definitions and interpretations). Although recommendations from the Act can include traditional Inuit counselling and/or other specified counselling it should be noted the limitation on priority Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 13 14 for orders is subject to and varied by any subsequent order made under the Child and Family Services Act, Children’s Law Act, or Divorce Act. Youth may participate in some mental health related programs once incarcerated. Education The Department of Education includes the Early Childhood Development Division and for delivering education from kindergarten through grade 12. Each school in Nunavut has a School Community Counsellor position. School Community Counsellor’s liaise between the school, community, and the home, as well as, providing supportive counselling services for students. Some schools in Nunavut also have Guidance Counsellor's who provide further counselling services as well as education and career planning. It is planned that in the fall of 2010, Elders will be incorporated more prominently into Nunavut schools for teacher and student support, which may, at times, include supportive counselling services in conjunction with the School Community Counsellor and/or Guidance Counsellor. Schools also administer Individual Student Learning Plans, on a case-by-case basis. The teacher may gather a team of individuals to design and implement the plan (parent, social worker, nurse, support systems etc.). Individual Student Learning Plans are individualized to meet the needs of students who require additional attention, such as students with exceptional skills or learning challenges. Challenged students can include students dealing with mental health problems and diagnoses or issues such as attention deficit hyper activity disorder; conduct disorder; oppositional defiant disorder; etc.. Nunavut schools do not provide in-depth mental health counselling should specific issues arise they will refer to Mental Health and/or Social Services. In 2004 the graduation rate dipped to 23.3% rebounding to 29.2% in 20051 (See Table 9). With another slight dip in 2006 to 28.5% following a steady increase of 29.6 in 2007; 32% in 2008, with a projected estimate of 39.3% in 2009 (numbers are estimates based on population data). Official Statistics Canada Graduation Rates for 2009/2010 have not been released yet – numbers are estimates based on population data from the Bureau of Statistics website (Government of Nunavut Department of Education, 2010). TABLE 8: HIGH SCHOOL GRADUATION RATE FOR NUNAVUT TRENDS 2001-2009 Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 14 1 Graduation rates are calculated by dividing the number of graduates by the average of the 17 and 18 year old population for that particular academic year, obtained from Statistics Canada (CANSIM table 051-0001, population estimates based on 2006 Census counts adjusted for census net under coverage). 15 Academic Year Average of 17 & 18 Year Olds in Nunavut Number of Graduates 2000/01 513 117 2001/02 537 137 2002/03 564 141 2003/04 574.5 134 2004/05 610 178 2005/06 650 185 2006/07 668.5 198 2007/08 663 211 2008/09 628.5 247 The Department of Education also implements the Income Support program; it is defined as a program of “last resort” to assist individuals and families (Government of Nunavut - Department of Education, 2009). An individual must be eighteen years of age or older to be eligible to apply for the program as well as participate in “Productive Choices”: a plan that includes wellness activities in alcohol and drug counselling, mental health counselling, and family support. FIGURE 1: NUNAVUT INCOME SUPPORT RECIPIENTS AND CASES MARCH 2001 TO MARCH 2006 TABLE 9: NUNAVUT INCOME SUPPORT RECIPIENTS AND CASES 2001 2002 2003 2004 2005* 2006* 0 2,250 4,500 6,750 9,000 2001 2002 2003 2004 2005 2006 Recipients Cases Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 15 16 Recipients 8,100 8,100 7,100 8,600 13,380 13,562 Cases 3,000 3,000 2,800 3,200 3,447 3,577 • Nunavut is still operating without an electronic case management information system, and is therefore unable to provide detailed profile data. • The number of recipients is the total recipients estimated during the year. In 2005 and 2006, due to reporting changes, recipients are reported for the year rather than a monthly average (Canada H. R., modified 2009). Food security is also a very real issue in Nunavut which impacts the mental health and development of children and youth. The amount of recipients receiving support from 2004 to 2006 shows a steady increase in services. The number of two parent and single parent families and children were not identified. Furthermore the reason for the dramatic increase in recipient numbers verses cases for 2005 and 2006 has not been explained. Non-Government Organizations Non-Government Organizations (NGO’s) offer an array of programs and services reflective of their community needs. Although some NGO’s receive core government funding, the majority of their program delivery is dependent upon project based funding. The success of receiving program funding is indicative of individual expertise in project and proposal development and management. Project-based funding is time limited and projects come and go without any certainty of reimplementation. This situation is most clearly represented by the recent discontinuation of funding to the Aboriginal Healing Foundation (AHF), which has affected 13 community organizations across Nunavut. Many of these organizations relied on AHF funds for core programming including Elder and youth camps, youth counsellors, support for the homeless, and other youth projects. Although service delivery is currently impeded by a lack of funding, organizations have been scrambling to secure alternative sources of other funding in order to continue their programs. The current government mental health and wellness strategy will see the Nunavut Government work in close partnership with non-government organizations. However the GN financial support structure for specific NGO programs and service delivery has not yet been shared. Depending on funding opportunities available, community-based organizations deliver an array of programs and services to children and youth: Youth and Elder Camps; group counselling; recreation; self esteem projects; peer support groups; breakfast and supper clubs; and community education. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 16 17 Both the Ilisaqsivik Society in Clyde River and Kugluktuk Wellness Centre are outstanding examples of community organizations providing programs and services for children and youth at the community level. Both agencies are strong in proposal driven projects and utilize funds available from multitude of initiatives including but not limited to Crime Prevention; Health Canada – First Nations and Inuit Health Branch; GN project funding; Embrace Life Council; community partnerships; as well Kugluktuk Wellness Centre receives funding from BHP mines. Specific child and youth projects and supports vary on funding initiatives. Ilisaqsivik has been strong in continuing their hip hop program, a project reflective of self esteem, suicide awareness, and peer support. Kugluktuk Wellness Centre partners with the women’s shelter and provides programs to child and youth who have witnessed abuse. Federal Initiatives Health Canada’s First Nations and Inuit Health Branch funds health programs and services for Inuit children and youth by partnering with in-territory bodies to develop contribution agreements. Programs include but are not limited to Aboriginal Head Start Programs; Brighter Futures Programs; Healthy Communities; the National Youth Suicide Prevention Strategy (NYSPS) and National Native Alcohol and Drug Abuse Program (NNADAP) including the National Youth Solvent Abuse Program (NYSAP). Communities have the flexibility to determine program components to provide community based programs, services and/or activities. Funds are typically used by non government and government organizations. Again acquiring funding for program delivery is dependent on the knowledge of funding availability, the expertise of proposal driven projects, and reporting requirements. The historical knowledge of funding for NGO’s is pertinent to the ability to deliver programs. Not all communities benefit from the programs identified below, and no single organization provides the full range of programs. Aboriginal Head Start Program provide early childhood and preschool intervention that supports development of the physical, intellectual, social, spiritual, and emotional well-being of Inuit (and First Nation’s) children from birth to 6 years of age. There are currently 7 head start programs across Nunavut: Coral Harbour, Gjoa Haven, Kugluktuk, Arctic Bay, Taloyoak, and Igloolik. Brighter Futures improves the quality of and access to culturally appropriate, holistic and community directed mental health and child development. Programs reflect health promotion through learning related activities; recreation and wellness activities; breakfast Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 17 18 programs; school based and after school programs; cultural activities; parenting programs; and increase knowledge and awareness. It seems most if not all communities utilize these dollars either through school programs or community wellness projects. Healthy Communities designed to assist communities and government in developing community based approaches to mental health crisis management. Activities include assessments, counselling services, referrals for treatment, and after care. National Youth Suicide Prevention Strategy is administered by the Embrace Life Council in Nunavut and has been used for project-specific initiatives in Nunavut, including camps, photography workshops and more. National Native Alcohol and Drug Abuse Program provides funding for community based alcohol and drug prevention, intervention, aftercare and follow up services. Services available to youth include school programs; cultural and spiritual events; recreation; support circles; crisis intervention; and outreach services. National Youth Solvent Abuse Program is a national residential in-patient treatment program that compliments community level activities. NYSAP is a network of ten youth solvent addictions centres across the country that provides culturally appropriate treatment, specialized treatment and recovery programs for both Inuit and First Nations youth with chronic solvent abuse problems. Nunavut Social Services utilizes two of the centres: Charles J Andrew Youth Treatment Centre (Sheshatshiu, Labrador) and Young Spirit Winds Treatment Program (Hobbema, Alberta). Other Initiatives Isaksimagit Inuusirmi Katujjiqatigiit- Embrace Life Council partners directly and indirectly with communities and the territorial government to coordinate cultural relevant information, training, and awareness of mental health issues and wellness. Children receive services and education through Embrace Life initiatives; family counselling for intergenerational impacts of residential school; and other individual community initiatives supported by Embrace Life. Youth participate in services provided to children as well as project specific activities to raise awareness of mental health issues such as the Inuusivut Project. The Inuusivut Project was a national initiative in conjunction with the National Inuit Youth Council to increase capacity to promote mental health through the use of multimedia techniques. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 18 19 Qaujigiartiit Health Research Centre (AHRN-NU) enables local health research reflective of both traditional knowledge and western sciences in addressing health concerns of communities in Nunavut. Promotion of youth mental health project based initiatives includes: Youth Exploring Identity In Relation To Suicide, a participatory video; Youth Mental Health and Wellness Knowledge Sharing Project; this Child and Youth Mental Health and Wellness Research, Intervention and Community Advocacy Program in Nunavut project. The latter encompasses the development and implementation of culturally-appropriate, locally developed and supported interventions such as youth health and empowerment camps, and parenting support programs that incorporate Inuit Qaujimajatuqangit and northern ways of knowing, as well as this needs assessment and primary research with youth. Nunavut Tunngavik Inc., Social and Cultural Development Department works primarily on policy and advocacy in areas of housing, education, language, health, justice, elders, youth, and social and cultural related research. From time to time initiatives may be implemented specifically for youth. Currently NTI, the Government of Nunavut, and Embrace Life are working in partnership on a territory-wide suicide prevention strategy. Programs in Other Jurisdictions An internet search was conducted to look for Inuit and Aboriginal Child and Youth Mental Health programs offered in other Canadian jurisdictions, and to a lesser extent those offered internationally. As expected, no comprehensive Inuit child and youth mental health programs were found elsewhere. There were some First Nation programs that addressed supportive early mental health services through home visitation programs. In addition there were some aboriginal/non-aboriginal programs that were noteworthy as they operated in a vast geographic area, similar to Nunavut’s, and explored the challenges to child and youth mental health service delivery that Nunavut also faces. Below is a summary of the findings from the internet search: Australia - Australia’s National Youth Mental Health Foundation, “Headspace” provides mental health and wellbeing support, information and services to youth aged 12 to 25 and their families across Australia. Established in 2006 and funded by the Commonwealth of Australia the primary focus is youth mental health and wellbeing. Headspace provides a continuum of youth friendly services including: mental health and counselling; education and employment; and alcohol and drug services. Headspace has an impressive website www.headspace.org.au which links youth and family members to centres and services across the country: provides links for twenty four hour help; fact sheets on depression, anxiety, drugs and alcohol, eating disorders, self harm, and psychosis; individual stories; Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 19 20 links to experts; research; photos; videos; online forums; downloads; conferences and event updates. It is an innovative website that promotes inclusion of youth from large cities to rural communities with limited services. There is an opportunity for youth to become involved with Headspace through an online youth consultation forum; youth participation programs; as well as discussions and debates on Facebook and Twitter. Reports indicate “high levels of success” with Headspace. The program provides a platform for early intervention and communication with youth to discuss mental health issues and concerns, a pro social tactic to diminish or prevent personal crisis. Labrador - The Charles J. Andrew Youth Treatment Centre is a residential youth solvent treatment centre in Sheshatshiu, Labrador. The Centre provides Innu, Inuit and First Nations youth aged 11 to 17 holistic treatments designed to nurture and promote cultural values and healing practices. The holistic treatment model is based on concepts of values and beliefs of traditional spiritual and cultural activities throughout all program components. It is part of the National Youth Solvent Abuse Program funded in part by Health Canada – First Nation Health and Inuit Branch. They assist youth and their families to regain self confidence through treatment. The program is influenced by traditional aboriginal values, beliefs and practices. Spirituality and a reconnection to the land are key components in nurturing self confidence. It is a twelve bed facility that operates on a 16 week treatment cycle and offers the following treatment programs: individual and group therapy; traditional therapy; family counselling; academic studies; recreation; wilderness program; virtues program; pre and post treatment; and outreach program. In 2005/06 the Centre offered a grief recovery outreach program in Pond Inlet where 90 students attended. Ontario – Thames Valley - mindyourmind.ca is a nonprofit mental health program of Family Service Thames Valley providing information, resources and interactive coping tools for youth at risk of stress, mental health disorders, suicide and self harming behaviours. Their resources are designed to reduce stigma associated with mental illness and increase access to professional and peer community support. It is an interactive website responding to the needs of youth between the ages of 16 to 24 for crisis management and support. The site which was designed by youth for youth can be translated in fifty different languages; provides links for individuals needing immediate help; provides tools for individuals who think their friend needs help; facts and symptoms; personal expression through stories, art , poetry, photos, videos; music; toolbox of information for coping, self management and stress busters; books; and web links etc. Their mission is “to inspire youth to reach out and get help for themselves or give help to their friends who are facing mental health challenges. To eliminate barriers to seeking help including the elimination of stigma often associated with mental health Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 20 21 problems.” Mindyourmind.ca was chosen as one of the top 5 best innovative applications of Information Communication Technology in Health Care as well as various other awards. Their website can be access on line through any search engine at mindyourmind.ca. Ontario – Knaw Chi Ge Win - The Knaw Chi Ge Win (New Beginnings) team provides a community based Aboriginal mental health care model that has led to various improvements in mental health care services. First Nations in Manitoulin District in northern Ontario has made significant strides in building community capacity for services delivery. Knaw Chi Ge Win is a collaborative, culturally safe service that integrates clinical approaches with traditional Aboriginal healing. They have integrated community based mental health services system by successfully pooling resources, sharing information, education, and developing collaborative programs for service delivery. Collaborative practices include prevention program development, client support services, daily management of clients with serious mental illness, shared intakes, case coordination, and access to traditional healers and medicine. The case manager (mental health nurse) monitors client medication as well as client conditions on a weekly to monthly basis. The case manger collaborates with visiting specialists, works with community paraprofessionals, traditional healers and other service providers. This collaborative approach builds on, ongoing capacity for traditional healing. Although traditional healing has been practiced for thousands of years, integrating traditional healing into a clinical settings the health board decided to develop guidelines. Part of the protocol includes screening healers for their expertise, community recognition as a healer, and the expectation of following a culturally based code of conduct. Yukon - Most provinces and territories have an intensive home visitation program for high risk families prenatally to children six years of age. Although the Government of Nunavut has looked at home visitation programs in the past, there are no such similar programs available in Nunavut at this time. In the Yukon, Kwanlin Dun First Nation (KDFN) adapted a Healthy Families Program that was initially designed in Hawaii. The premise of the program promoted personal strengths and effective parenting, and was a tool to promote child health and wellness. Much of the program needed to be adapted to the Kwanlin Dun community and the First Nation culture. The program provided support to parents living in poverty; those dealing with mental health issues; alcohol and drug issues; those involved in the justice system; teen parents, and/or child protection involvement. KDFN’s program sunset and federal dollars where diverted to a Yukon Territorial Government program. KDFN continued to support a volunteer home visitation program providing support to high risk parents to promote healthy outcomes for children. The program involved a case management style and individual planning for families on: Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 21 22 traditional parenting; land based family camps; child protection liaison; justice liaison; health promotion; Head Start programs for youth aged 18 months to school age; school liaison; and intergenerational family activities. 5. SOCIAL DETERMINANTS There is a vast array of research on childhood experiences and their impact on mental health. Researchers have documented the profound implications of child abuse (physical, sexual, emotional, and/or neglect); children who witness family violence; poor parenting skills; and familiar substance abuse can affect a child’s mental and emotional health (Hicks, 2007). Social determinants such as overcrowded housing; food insecurity; low levels of education; maternal disadvantage; and individual, collective, and historical trauma also contribute to the shaping of children and youth. People with mental illness often live in chronic poverty, and chronic poverty can be a significant risk factor for poor physical and mental health (Association, 2007). The Government of Nunavut’s Report Card: Qanukkanniq confirms Nunavut has chronic problems of poverty. Overcrowded Housing A paper published by Pauktuutit - Inuit Women of Canada states the housing crisis exacerbates social issues in Nunavut including family violence, substance abuse, and child sexual abuse. All of which can be linked to the impacts affecting child and youth mental health. In 2009 it was reported that 700 housing units are required per year to keep up with the population growth of Nunavut (Duggal, 2009). In collaboration with the Nunavut Bureau of Statistics and Statistics Canada, the Nunavut Housing Corporation is currently conducting a Nunavut Housing Needs Survey. The survey will identify housing needs for Nunavummiut (including such issues as overcrowding) and assist in prioritizing decisions for the Housing Corp’s program delivery. The percentage of children and youth affected by overcrowded housing is not clearly identified in current statistical data. However research reflects overcrowded homes affect food security, regular routines for children and youth, sleep disturbances, and increased injury (Pauktuutit Inuit Women of Canada, 2007). Food Security Nunavummiut in several communities report children often go hungry to school (Group, 2009). The International Polar Year Inuit Health Survey 2007 -2008, Qanuippitali? an adult survey for individuals eighteen and older also included a cross sectional survey of Inuit children in sixteen of the twenty five communities in Nunavut. The survey reports Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 22 23 70% of preschoolers reside in homes where food is rated as insecure (Egeland, 2010). Of 1,038 households, 7 in 10 reported a shortage of food and 4 in 10 reported a “severe” lack of food over the course of one year (Egeland, 2010). According to this data, the percentage of Nunavummiut who experience lack of food during the year is seven times higher than the national average. The extreme expense of healthy food in the north often results in the replacement of nutritious choices by less expensive and less nutritious foods. Studies indicate nutrition plays a significant role in mental health and illness (Vieira, 2008). In addition, research suggests access to affordable food plays a larger role in food choices than health education. The federal government recently revealed a $60-million per year food subsidy program to replace the current Food Mail program that will begin in April 2011 (Ryder, 2010). The subsidy is aimed at reducing the cost of nutritious food for consumers through the local grocery stores and a health promotion program to provide health education about healthy food choices and preparation. Education The Government of Nunavut report “Qanukkanniq: What We Heard” states that people across Nunavut are concerned about the education standards in the Territory. They report that they feel the standards are set too low and there is a common perception among those who participated in the Qanukkanniq survey that children are not receiving a quality education in Nunavut. It is further felt that basic education requirements for post secondary education are not being met. Although the graduation rates have increased slightly in recent years (32% for 2008), MLA Johnny Ningeongan was reported as saying that Nunavut high school graduates are finding they have to upgrade their skills for an additional year to meet post secondary requirements in the south (News, 2009). Research also suggests the early onset of mental health problems increases the risk of poor education attainment (Patient Health International, 2009). Further challenges of school success include attendance; ability to fill teaching and support staff positions; parental and family involvement; cultural appropriateness; as well as the important role schools play with children and youth not only providing an education but an environment that promotes inclusion and acceptance. In the report “Qanukkanniq: What We Heard”, Nunavummiut shared concerns from Nunavummiut about high truancy rates that are increasingly becoming common among younger children; the need for parent supports; and strengthening partnerships between the Department of Education and parents working together to support education. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 23 24 Maternal Disadvantage Compared to the rest of Canada, Inuit families are younger and larger. Pauktuutit reports Inuit women who have children at an early age tend to have larger families than other aboriginal or non aboriginal groups (Pauktuutit Inuit Women of Canada, 2007). Births are a cause for celebration in Nunavut, and the gift of a child is like no other. If however, the pregnancy is unplanned or the result of violence or pressure, the situation is very serious. Pauktuutit highlights that teen pregnancy is a very real concern in Nunavut (Archibald, 2004). Teens tend to have fewer resources than older parents and therefore their children have the potential to face greater challenges attributed to social determinants that impact mental health such as poverty, overcrowded housing, food insecurity, low parenting skill, etc. Unplanned teenage pregnancy perpetuates a cycle of family stressors and may contribute to mental health issues both among the teen parents, their families and the child. A teen mother is less likely to complete school and more likely to receive social assistance (Luong, 2008). Low maternal age, large families, single parent families, and unplanned pregnancies increase risk for child maltreatment (Ordolis, 2007). FIGURE 2: NUNAVUT TEEN PREGNANCY BY AGE GROUP 2003 TO 2004 In 2003 to 2004 statistics indicated 15 year olds were having babies at the same rate as 19 year olds (Figure 2). In total, there were 233 teen pregnancies in Nunavut; 113 were 18 and 19 year olds, 116 were 15 to 17 years of age, and 4 were under the age of 15. 0 75 150 225 300 155to5195years 155to5175years 185to5195years Under5155years Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 24 25 Nunavut is reported as having the highest teen pregnancy rate in Canada (Canada S. , modified 2009). Residential School and Other Trauma Many Inuit were sent to residential schools which have had documented impacts on family bonding, self esteem, cultural knowledge, and language loss (Kirmayer et al, 2007). Former residential school students missed learning about Inuit skills and traditions through observation, a key component of Inuit culture. Additionally, many were forbidden to speak Inuktitut or Inuinnaqtun and as a result loss their connection to their first language. As residential school attendees became parents, many were dealing with the trauma of the experience of being separated from their families; their language; and their cultural history. Many residential school attendees also experienced physical, sexual and/or emotional abuse while in the care of the school system. The intergenerational effects of these events on the children and grandchildren of the residential school attendees continue today. Both the immediate and intergenerational effects of these experiences among Canada’s Indigenous peoples have been linked to physical and sexual abuse, low coping skills, suicide, anxiety, depression, drug and alcohol abuse, and teen pregnancy as well as other post traumatic stressors such as rage, anger, and feelings of inferiority, and parenting issues such as emotional coldness, rigidity, neglect, poor communication and abandonment (Kirmayer et al, 2007, pp. 72). Additional family-related trauma; the community grief experienced when multiple suicides occur; violence and murders experienced within families; and individuals who experienced or witnessed violence and/or sexual abuse may suffer from post traumatic stress disorder which in turn can affect the way they interrelate with children and community (Kirmayer et al, 2007). 6. PROGRAM SERVICE GAPS The following areas were identified as program and/or service gaps, using the information gathered from the territorial environmental scan, media research, program questionnaires, and analysis of other data: 1. In-Territorial Child and Youth Mental Health Programs There are no specific child and/or youth mental health programs found in Nunavut. Children and/or youth dealing with mental health issues or illness are often moved between mental health and social service programs, or referred out of the territory. One hundred percent of the 32 respondents in the environmental questionnaire of programs and services sent out for the purposes of this report felt the mental health needs of Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 25 26 children and youth in Nunavut are not being met. It was suggested that programs for children and youth should reflect levels of development instead of grouping services for the entire child and youth population. For example, it was suggested that there should be different programs for preschool (ages 3 to 5); school aged (6 to 12); and teen (13 to 19) programs. 2. Proactive Early Childhood Programs Programs are needed in early childhood for children who are at risk of developing mental health issues and/or illness. Research supports child mental health and developmental outcomes depend largely on the extent of the capabilities of families to provide a safe and nurturing environment. In addition to family functioning, Nunavut faces significant challenges in addressing social determinants that affect the mental health and wellbeing of children. A home visitation program is one way of providing support to parents who are experiencing challenges. This mirrors a finding in the recent Qaujigiartiit report on parenting support programs for parents in Nunavut. These programs are delivered by paraprofessionals with expertise in parenting, cultural considerations, and links to other programs and resources in the community that minimize the risk factors to the family. For example, the worker can show a young mother how to engage with her child through traditional teachings; social rules; and traditional discipline as well as encouraging referral to Head Start; preschool programs; recreation and wellness activities. In addition to services for the child the worker can encourage the family to utilize other additional resources to increase family functioning i.e. social assistance, community freezer; counselling; alcohol and drug referral etc. 3. Specifically Trained Child and Youth Care Positions Those in positions dedicated to children and youth (mental health workers, social workers, and child and youth outreach workers) require rigorous and specific training in child and adolescent development, child psychology, parent-child relationships, and parenting. Alternatively, hiring and/or consulting with a child and youth care practitioner could offer a unique alternative to working with children/youth and their families. Practitioners are focused on child and youth growth and development; concerned with the child/youth totality of function; developmental perspective; operate on the day to day functioning of the child/youth; develops therapeutic relationships with child/youth, families, informal and formal helpers; intervention and solution focused treatment plans indicative of the child/youth’s environment, family, and community. 4. Post Treatment/Aftercare Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 26 27 Psychiatric hospital stays are brief interventions to stabilize children and adolescents. Once it is thought that the individual is no longer a danger to themselves or others the individual is discharged and generally return back to their home community. This is in part based on the premise of assessable and effective aftercare services. In addition, youth receiving long term treatment in residential facilities are returned to the community with an aftercare plan. Ideally aftercare should build on the treatment components with a concrete plan to maintain and develop skills to improve the outcome for the child/youth. Although aftercare was not evaluated, the evidence suggests limited or no resources to follow a plan. Health staff can ensure prescriptions are filled and follow up medical appointments are made, however the delivery of an effective aftercare plan to work with the child/youth and their families entails compliancy, resources, and expertise in child and youth case management. Social workers do not have the resources or the expertise to implement aftercare plans. 5. Child Psychologist A child psychologist works specifically with children and adolescents. There is no contracted child psychologist working in Nunavut, although in rare instances one may be contracted through social services to conduct parenting assessments for child protection matters. Child psychologists provide expertise in normative and abnormal child development and parenting. All professionals working with children and youth would benefit from access to a child psychologist, as this would assist in developing appropriate case planning. 6. Interagency Collaboration Interagency meetings are rare with no one agency having been identified, at the time of this report, as taking a lead role in organizing meetings. High case loads; crisis intervention; high rates of staff turnover; and diverse visionary goals can diminish the consistency of interagency committee meetings. The benefits of coordinated interagency meetings include addressing current community needs; trends in service delivery; and gaps in service delivery due to vacant positions and/or present community need. Properly implemented meetings identifying common goals would improve health, education, wellness, and social services program delivery outcomes. 7. Community Awareness and Education Increased community awareness about the importance of protecting and nurturing child and youth mental health, and fostering recognition of mental health problems is needed. Support is also needed to encourage parents/caregivers to recognize mental health challenges and seek treatment and services. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 27 28 8. Consistent Core Funding Many services and programs currently provided to children and youth are reliant upon a project-based funding model. They are often proposal-driven, time-limited projects. Funds are insecure and continuity of program services is not reliable. Core funding would secure planning and longevity of child programs. Core funding also secures committed staff and provides opportunity to build on project successes. Proposals could “top up” programs however, core funding would ensure program availability and longevity in Nunavut communities. 9. Nunavut Youth Treatment Facility There are currently no residential treatment services for high risk youth in Nunavut. Nunavut relies on programs outside of the territory for intensive treatment for substance abuse, emotional disturbances, and severe mental illness. Evaluating a youth in the context of their environment and culture is central to assessment. Nunavut needs resources reflective of Inuit values and principles, as well as treatment modalities reflective of social ecological perspectives within interconnected systems such as family, extended family, community, school, peers, modern and traditional resources, culture, etc. 10. Education for Caregivers Caregivers are under enormous stress parenting a child/youth with mental illness. Support for caregivers is essential, as well as education on behavior management techniques and what to expect from the illness. Educating caregivers will increase their coping skills and strategies for parenting a child/youth with mental illness. 7. BEST PRACTICES A best practice is a technique, activity or methodology that through experience and research has been proven to produce outstanding results that may be modified and adapted. 1. Community-Based Approach A community-based approach includes incorporating expertise in identifying community needs; protective and risk factors; strengths and assets; cultural knowledge, values, and traditions; and community history and structure (what have we been through, what has or hasn’t worked). In addition, a community-based approach strengthens community pride and capacity to address and direct healing. Community involvement is essential in the development of effective services for youth, including full youth participation. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 28 29 2. Holistic Approach A holistic approach includes exploring all the elements of the individual including their community. Individuals are part of a community. Healing and wellness must take into account emotional, spiritual, physical, and mental well-being in the environment and community where the child or youth lives. Individuals interrelate with their environment in their own way based on their experiences. Risk and protective factors need to be incorporated into the steps of healing for the individual within a model that builds upon the strengths of their community and culture. Family members play a very integral role in the child/youth’s life and therefore must also be included in the plan when appropriate. 3. Culturally Appropriate Information and Services Ensure that information and services are culturally appropriate for both children/youth and parents; provide relevant mental health information for the different stages of child development in an understandable and culturally appropriate manner; and consult with Elders to develop culturally appropriate intake/initial assessments, compatible with Inuit values and believes. 4. Cultural Community Based Orientation A large amount of care is provided by agency nurses from outside of Nunavut who come for both short- and longer-term contracts. Professionals coming into communities should require a mandatory orientation to Inuit culture as well as the North. This would assist health professionals in the provision of treatment that is culturally sensitive; respectful of northern ways of knowing and understanding health; and inform solutions for focused after care plans. 5. Continuum of Services/ Multiple Interventions There is growing evidence of the effectiveness of integrated mental health services delivered in settings such as schools, justice, child welfare, and early childhood programs such as Head Start. A continuum of wellness activities such as on the land activities; sewing; drum making; preschool programs etc.; treatments such as support circles, healing groups, individual counselling, family conferencing, and residential treatment; and a well thought-out after care plan that has been culturally designed in conjunction with the treatment provider. 6. Identified Case Manager While a continuum of services is beneficial to the individual seeking help, one agency or worker needs to take the responsibility to ensure the implementation of the plan. Often Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 29 30 services are received from various providers without active coordination of service. Ineffective case management may lead to: diverse case directionality, fragmented service, lack of purposeful direction, and/or repeat in services, giving inconsistent messages to the client and family. It is imperative that one case manager is identified to ensure all needs of the child/youth and their family is being met. 7. Traditional Service Model Collaborative, culturally appropriate services that integrate clinical approaches with traditional healing models have proven affective in other remote Indigenous communities. 8. Recreation and Kinship Programs Purposeful recreation helps improve self esteem; instills a sense of belonging; builds social networks; enhances skills; and can provide teachings about alternatives for healthy living. Intergenerational programs promote healthy families and communities. 9. Broadband Development Connecting remote communities together through the internet allows for coordinated multi-jurisdictional initiatives to address widespread child and youth mental health issues. Significant investment has been made to provide internet access in all Nunavut communities. Capitalizing on these tremendous infrastructure boosts for Nunavut would be the next step. 10. Stakeholder Collaboration and Coordination Networking between agencies increases resources for clients; avoids repeat of services; identifies needs for service delivery; provides diverse expertise to scaffold and generate ideas for common goals; and ensures all of the child/youth’s service providers are active in implementing a focused plan. 11. Job Shadowing/Mentoring/Interim Positions Working with child and youth mental health issues is very complex. Mentoring and capacity building is the key to success in many workplaces. There should be an opportunity to build capacity at the local level through the continuum of front line child and youth service providers. Creating job shadowing/mentoring/intern positions to increase skill set with paraprofessionals and professionals. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 30 31 REFERENCES Association, C. M. (2007, November). Poverty and Mental Illness. Retrieved June 08, 2010, from Canadian Mental Health Association, Ontario: http://www.ontario.cmha.ca/backgrounders.asp. Bell, J. (2010, February 05). NunatsiaqOnline 2010-02-05: NEWS: Nunavut premier: no more poverty by 2030. Retrieved May 03, 2010, from NunatsiaqOnline: http://nunatsiaqonline.ca/stories/article/87567. Bobet, E. (2010, April). Towards the Development of a Nunavut Suicide Prevention Strategy. Retrieved May 21, 2010, from Nunavut Tunngavik Inc.: http://www.tunngavik.com/wp-content/uploads/2010. Canada, H. R. (modified 2009, December 17). Social Assistance Statistical Report: 2006. Retrieved May 18, 2010, from Human Resources and Skills Development Canada: www.hrsdc.gc.ca/eng/ publications_resources/social_policy/fpt/page16.shtml. Canada, S. (modified 2009, April 15). Teen pregnancy, by outcome of pregnancy and age group, count and rate per 1,00 women, Canada, provinces and territories, 2003 to 2004. Retrieved May 03, 2010, from Statistics Canada: http://www.statcan.gc.ca/pub/82-221-x/2008001/tmap-tcarte/dt-td/co4tpx-eng.htm. CBCNews. (2008, January 17). High suicide rate persists in Nunavut: coroner. Retrieved May 23, 2010, from CBCnews: http://www.cbc.ca/canada/north/story/2008/01/17 Duggal, S. (2009, March 6). Federal cash for Northern housing crunch. Retrieved May 16, 2010, from Capital News Online. Education, N. D. (2010, May 27). Department of Education Graduation Rate Trends in Nunavut 2001-2009. Iqaluit. Egeland, G.M. (2010,). CMAJ Research. Retrieved May 03, 2010, from Food insecurity among Inuit preschoolers: Nunavut Inuit Child Health Survey, 2007-2008: http://www.cmaj.ca/cgi/content/full/ 182/3/243. Ethnic Disparities in Mental Heath and Educational Attainment: Comparing Migrant and Native Children. (2007). Retrieved May 2010, from International Journal of Social Psychiatry: http://isp.sagepub.com/cgi/ content/abstract/53/6/5. George, J. (2009, July 19). NunatsiaqOnline 2009-07-19: Study: seven in 10 Nunavut families go hungry. Retrieved April 26, 2010, from Nunatsiaq Online: http://www.nunatsiaqonline.ca/stories/article/study. Gionet, L. (2006). Inuit in Canada: Selected fingings of the 2006 Census. Retrieved may 2010, from Statistics Canada: http://www.statcan.gc.ca/pub/11-008x/2008002/art. Group, N. S. (2009, October 1). Qanukkanniq? - The GN Report Card Project. Retrieved May 03, 2010, from Government of Nunavut: http://www.gov.nu.ca/reportcard/analysis%20and%20recommendations.pdf. Hicks, J. (n.d.). The Social Determinants of Elevated Rates of Suicide Among Inuit Youth. Retrieved April 29, 2010, from http://www.jackhicks.com/e107_files/downloads. Information, C. I. (2008, April 29). Improving the Health of Canadians 2008; Mental Health, Delinquency and Criminal Activity. Retrieved April 5, 2010, from Canadian Institute of Health Information: www.hihi.ca/cphi. Kirmayer, L.J., Brass, G.M., Holton, T., Paul, K., Simpson, C., & Tait, C. (2007) Suicide Among Aboriginal People in Canada. Prepared for The Aboriginal Healing Foundation. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 31 32 McGill Group for Suicide Studies, McGill University. (2007, November). Suicide among Aboriginal Population of Canada: Social and Spirtiual Determinants. Retrieved June 3, 2010, from http:www.bahaimedicalassociation.ca/Downloads/Taravat%20Ostovar.pdf. News, C. (2009, December 03). Many Nunavut high school grads at a disadvantage: MLA. Retrieved April 2010l, from CBC News: www.cbc.ca/canada/north/story/. Organization, W. H. (n.d.). Social Determinants Of Heath Second Edition The Solid Facts. Pauktuutit Inuit Women of Canada. (n.d.). Sivumapallianiq National Inuit Residential School Healing Strategy Journey Forward. Retrieved June 16, 2010, from http://www.pauktuuit.ca/pdf/ JourneyForward_ENG.pdf. Pauktuutit. (2007, June 20 -22). Pauktuutit Inuit Women of Canada. Retrieved April 2010, from National Aboriginal Woen's Summit - Strong Women, Strong communities. Ryder, K. (2010, May 24). Food Mail to be replaced. Nunavut News/North . Nunavut: Northern News Services. Services, D. O. (2009). 2008-2009 Annual Report of the Director of Child and Family Services. Iqaluit, Nunavut: Department of Nunavut Health and Social Services. Statistics, N. B. (2009, 07 01). www.gov.nu.ca/eia/stats/index.html. Retrieved 03 26, 2010. Vail, I. E. (2008, August). 2008 Nunavut Economic Outlook Our Future To Choose. Retrieved May 2010, from 2008 NUNavut EcoNomic outlook: http://www.tunngavik.com/documents/publications/ 2008%20Economic%. Vieira, S. E. (2008, January 21). Nutritional therapies of mental disorders. Retrieved May 26, 2010, from Nutrition Journal: http://www.nutritionj.com/content/7/1/2. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 32 33 Appendix A --- Nunavut Programs and Services Database Cambridge Bay Community Wellness Centre Contact: Marie Ingram Hamlet: Cambridge Bay Telephone: 867-983-4674 Email: MIngram@cambay.nu.ca Services: Proposal driven child and youth wellness initiatives. Programs may vary year to year. Ilisaqsivik Society Contact: Jakob Gearheard Hamlet: Clyde River, Nunavut Phone: 867-924-6565 Services: Ilisaqsivik offers mental health/wellness programs to both children and youth. Hip Hop (harm reduction and suicide prevention) is available to both children and youth. Other services for youth include on the land activities; film training – Wellness Public Service Announcements; on site addictions, family, youth, and Elder counsellors. Proposal driven programs and projects may vary from year to year. Kitikmeot Mental Health – Department of Health and Social Services Contact: Regional Manager, Mental Health Hamlet: Cambridge Bay, Nunavut Phone: 867-983-4073 Email: unavailable Services: Kitikmeot Mental Health offers limited counselling for self referred youth. Children are medically assessed and only seen by a mental health worker if the worker in the community has direct experience working with children. Generally children and youth are referred to social services, pediatrician, or a child psychologist. Kitikmeot Wellness Programs – Department of Health and Social Services Contact: Regional Manager, Wellness Program Coordinator Hamlet: Cambridge Bay, Nunavut Phone: 867-983-4154 Email: unavailable Services: Contribution agreements; Brighter Future projects; proposal driven projects (hip hop, anti bullying); collaboration and community wellness planning. Nunavut Kamatsiaqtut Help Line Phone: 867 -979-3333 or toll-free 1 800-265-3333 Hours of Operation: Every Night 7:00 p.m. – midnight Services: Supportive counselling and referral. Kivalliq Crisis Line Telephone: 867-645-3333 Hours of Operation: Monday to Friday 7:00 p.m. – 10:00 p.m. Services: Supportive counselling and referral. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 33 34 Kid’s Help Phone Telephone: 1-800-668=68968 Hours of Operation: 24 hours Services: Supportive counselling and referral. Qikiqtaaluk Mental Health – Department of Health and Social Services Contact: Regional Mental Health Manager Hamlet: Pangnirtung Telephone: 867-473-2637 Services: Qikiqtaaluk Mental Health offers limited services to both children and youth in the region. There are two Child and Youth Care Outreach Workers, with no specific programs identified for children and youth. Services include crisis intervention; first episode diagnostic intervention; alcohol and drug assessment; and out of territory referral. Iqaluit Mental Health – Department of Health and Social Services Contact: Regional Mental Health Manager Hamlet: Iqaluit Telephone: 867-975-7255 Services: Iqaluit Mental Health offers limited services to both children and youth in the region. There are no specific mental health programs for children and youth. Children are seen on a case by case basis and generally referred to social services. Youth services include crisis intervention; first episode diagnostic intervention; alcohol and drug assessment; cognitive behaviour therapy; individual counselling; psychiatric case management; and out of territory referral. Access to resident psychologist and visiting psychiatrist however not specific to children. Kalvik Youth Services Ltd. Group Home Hamlet: Cambridge Bay Telephone: 867-983-2644 Six bed group home for children/youth between the ages of 10 to 15. Parent model group home operated by live in care providers. Social Services referral. Kugluktuk Wellness Centre Contact: Bonnie Almon Hamlet: Kugluktuk Telephone: 867-982-6519 Email: kugwell@qiniq.com Therapeutic groups for children and youth who have witnessed abuse; therapeutic intervention and counselling for victims of sexual and physical abuse; drug and alcohol counselling and joint referral for residential treatment; addiction specialist provide youth programming twice a year; supper club; recreation programming; and Brighter Futures. Programs may vary year to year. Pulaarivik Kablu Friendship Centre Contact: George Dunkerley Hamlet: Rankin Inlet Telephone: 867-645-2600 Cultural and land based wellness activities. Programs and projects may vary year to year. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 34 35 Arctic Bay/Nanisivik – Health and Social Services Health Centre: 867-439-8873 Social Services: 867-439-8812 After hours: Above numbers will connect you to on call nurse and social worker. Arviat – Health and Social Services Health Centre: 867-857-3100 Social Services: 867-857-3102 After hours: Above numbers will connect you to on call nurse and social worker. Baker Lake – Health and Social Services Health Centre: 867-793-2816 Social Services: 867-793-2839 After hours: Above number will connect you to on call nurse and social worker. Cambridge Bay – Health and Social Services Health Centre: 867-983-4500 After hours: Above number will connect you to on call nurse. Social Services: 867-983-2613 After hours: 867-983-4071 Cape Dorset – Health and Social Services Health Centre: 867-897-8820 Social Services: 867-897-8803 After hours: Above number will connect you to on call nurse and social worker. Chesterfield Inlet - Health and Social Services Health Centre: 867-898-9968 Social Services: 867-898-9131 After hours: Above number will connect you to on call nurse and social worker. Clyde River - Health and Social Services Health Centre: 867-924-6377 Social Services: 867-924-6014 After hours: Above number will connect you to on call nurse and social worker. Coral Harbour - Health and Social Services Health Centre: 867-925-9916 Social Services: 867-925-8431 After hours: Above number will connect you to on call nurse and social worker. Gjoa Haven - Health and Social Services Health Centre: 867-360-7441 Social Services: 867-360-6387 After hours: Above number will connect you to on call nurse and social worker. Grise Fjord - Health and Social Services Health Centre: 867-980-9923 Social Services: 867-252-3865 After hours: Above number will connect you to on call nurse and social worker. Hall Beach -Health and Social Services Health Centre: 867-928-8827 Social Services: 867-928-8953 After hours: Above number will connect you to on call nurse and social worker. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 35 36 Igloolik - Health and Social Services Health Centre: 867-934-2100 Social Services: 867-934-2120 After hours: Above number will connect you to on call nurse and social worker. Iqaluit – Health and Social Services Qikiqtani General Hospital Telephone: 867-975-8600 Social Services Telephone: 867-975-4850 After hours: Above number will connect you to on call social worker. Kimmirut - Health and Social Services Health Centre: 867-939-2217 Social Services: 867-939-2226 After hours: Above number will connect you to on call nurse and social worker. Kugaaruk - Health and Social Services Health Centre: 867-769-6441 Social Services: 867-769-7999 After hours: Above number will connect you to on call nurse and social worker. Kugluktuk - Health and Social Services Health Centre: 867-982-4531 Social Services: 867-982-7411 After hours: Above number will connect you to on call nurse and social worker. Pangnirtung - Health and Social Services Health Centre: 867-473-8977 Social Services: 867-473-8944 After hours: Above number will connect you to on call nurse and social worker. Pond Inlet - Health and Social Services Health Centre: 867-899-7500 Social Services: 867-899-8712 After hours: Above number will connect you to on call nurse and social worker. Qikiqtarjuaq Health and Social Services Health Centre: 867-927-8916 Social Services: 867-927-8863 After hours: Above number will connect you to on call nurse and social worker. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 36 37 Rankin Inlet - Health and Social Services Health Centre: 867-645-8300 Social Services: 867-645-5064 After hours: Above number will connect you to on call nurse and social worker. Repulse Bay - Health and Social Services Health Centre: 867-462-9916 Social Services: 867-462-4020 After hours: Above number will connect you to on call nurse and social worker. Resolute Bay - Health and Social Services Health Centre: 867-252-3844 Social Services: 867-252-3865 After hours: Above number will connect you to on call nurse and social worker. Sanikiluaq - Health and Social Services Health Centre: 867-266-8965 Social Services: 867-266-8738 After hours: Above number will connect you to on call nurse and social worker. Taloyoak - Health and Social Services Health Centre: 867-561-5111 Social Services: 867-561-5625 After hours: Above number will connect you to on call nurse and social worker. Whale Cove - Health and Social Services Health Centre: 867-896-9916 Social Services: 867-896-9062 After hours: Above number will connect you to on call nurse and social worker. Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 37 38 Appendix B --- Out of Territory Programs and Services Database Centre for Addiction and Mental Health Program: Child, Youth and Family Program Services: outpatient services include: adolescent; better behaviours; gender identity; mood and anxiety disorders; psychiatric consultation; psychotic disorders; youth addiction and concurrent disorders; and youth outreach Address: 250 College Street Toronto, Ontario Telephone Number: 416-593-6110 Website: www.camh.net Charles J. Andrew Youth Treatment Centre Alcohol and solvent abuse programs for youth aged 11 to 17. Treatment includes: assessment; alcohol and drug education; case management; client orientation; crisis intervention; consultation; cultural activities; individual and group counselling; and aftercare planning. Services include land base detoxification and dual addiction. 14 week treatment cycle, block intakes. Address: P.O. Box 109 Sheshatshiu, Labrador A0P 1M0 Telephone: 709-479-8995 Website: www.cjay.org Children’s Hospital of Eastern Ontario (CHEO) The mental Health Program provides a range of inpatient and outpatient services for children and youth including prevention, early intervention, diagnostic and treatment services. CHEO mental health is in partnership with the Royal Ottawa mental Health Centre (Youth Program), psychiatric and mental health services are provided. Address: 401 Smyth Road Ottawa, Ontario K1H 8L1 Website: www.cheo.on.ca Country Haven Acres Client-centered long term residential services for youth aged 12 to 18 years who are intellectually challenged and/or dual diagnosed who are difficult to place due to problematic behaviours (emotionally disturbed/behaviourally disordered youth). Program highlights – 4 Seasons Nature Program: participants engage in multiple outdoor activities; life skills; and on site school. Address: 968 Hwy 572 Ease, R.R. #1 Emsdale, Ontario P0A 1J0 Telephone: 705-636-9875 Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 38 39 Haydon Youth Services Two therapeutic residential group homes for disturbed and disordered youth aged 12 to 18. Services include stabilization; psychological assessment; behaviour management; suicide ideation; anger management; and victims of sexual and physical abuse. Address: 220 Gibb Street Oshawa, Ontario L1J 1Y7 Telephone: 905-571-0731 Website: www.haydonyouthservices.com Royal Alexander Hospital Child and Adolescent Psychiatry Unit – provides inpatient elective psychiatric assessment; short term treatment; and psychiatric emergency admission for stabilization and assessment. Address: Units 35 & 36; 3rd Floor Children’s Pavilion 10240 Kingsway Avenue Edmonton, Alberta T5H 3V9 Telephone: 780-735-4635 Website: www.albertahealthservices.ca Royal Ottawa Health Centre Group (ROHCG) Psychiatric assessment, treatment and rehabilitation for youth with serious and complex mental illness. Address: 1145 Carling Avenue Ottawa, Ontario K1Z 7K4 Telephone: 613-722-6521 Website: www.rogch.on.ca Spirit of Our Youth Homes Provide group and semi independent living to Aboriginal youth. Services include aboriginal resource person; Elders; Aboriginal ceremonies; education; recreation; life skills; advocacy; crisis intervention; and family reunification. Address: 10534 – 106 Street, Edmonton, Alberta, T5H 2X6 Telephone: 780-474-7140 Website: www.spirityouth.ca Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 39 40 Ranch Ehrlo Society A range of assessments, treatments, education, and support services to improve the social and emotional function of children and youth. Although services are provided to children, children under twelve are encouraged to seek family setting programs. Seventy percent of the Ranch’s population is youth aged thirteen to eighteen. Services continue for youth over eighteen with severe emotional and mental challenges. Address: Box 570, Pilot Butte, Saskatchewan S0G 32O Telephone: 306-781-1800 Website: www.ehrlo.com Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 40 41 Appendix C --- Regional Program Questionnaire Child and Youth Mental Health Services Questionnaire Form 1 – Regional Programs Interview Guide # 1: Regional Programs The Qaujigiartiit Health Research Centre (AHRN-NU) is part of a tri-territorial health research network in Canada’s north. Qaujigiartiit is currently working on a Child and Youth Mental Health Intervention, Research and Community Advocacy Project in Nunavut. The purpose of this questionnaire is to ascertain child and youth mental health (CYMH) program and services delivery in Nunavut. The information you provide during this interview will be used for the purposes of this project only. In writing the report specific opinions will not be linked back to you as the source of information, in order to ensure confidentiality. Name of Department:________________________________________________ Contact Name and Designation:________________________________________ Region:___________________________________________________________ Communities Covered:_______________________________________________ _________________________________________________________________ Phone Number:_____________________________________________________ Email:____________________________________________________________ Questions: 1). Does your department offer mental health/wellness programs to children aged 3 to 12? If yes, please specify: _______________________________________________ 2). Are mental health/wellness programs offered to youth aged 13 to 19? Please specify:_____________________________________________________ 3). What programs are utilized for out of territorial referral:_________________ 4). Does your agency work with child and/or youth that have been diagnosed with mental illness? If so please describe (i.e. conduct disorder, ADHD, etc.) 5). Describe what services your department offers on a regular basis (i.e. counselling; alcohol and drug counselling; diagnostic assessments; individual education plan; food bank; clothing exchange; etc) : 6). Please list visiting mental health specialist (designation and rotation i.e. psychiatrist every six months) 7). Do you feel the needs of child and youth with mental illness or issues are being met in the territory? 8). What other, if any other programs or services do you feel would benefit children and youth dealing with mental health issues? 9). Other comments Appendix D --- Hamlet Program Questionnaires Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 41 42 Child and Youth Mental Health Services Questionnaire Form 2 – Hamlet Programs Interview Guide # 2: Hamlet Programs The Arctic Health Research Network (AHRN) – Nunavut is part of a tri-territorial health research network in Canada’s north. AHRN is currently working on a Child and Youth Mental Health Intervention, Research and Community Advocacy Project in Nunavut. The purpose of this questionnaire is to ascertain child and youth mental health (CYMH) program and services delivery in Nunavut. The information you provide during this interview will be used for the purposes of this project only. In writing the report specific opinions will not be linked back to you as the source of information, in order to ensure confidentiality. Name of Agency:________________________________________________ Contact Name and Designation:________________________________________ Hamlet/Community:_________________________________________________ Phone Number:_____________________________________________________ Email:____________________________________________________________ Questions: 1). Does your agency offer mental health/wellness programs to children aged 3 to 12? If yes, please specify: ____ 2). Are mental health/wellness programs offered to youth aged 13 to 19? Please specify:_____ 3). Do you refer to out of territorial programs, if so where: 4). Does your agency work with child and/or youth that have been diagnosed with a mental illness? If so please describe (i.e. conduct disorder, ADHD, etc.) 5). Describe what services your program offers on a regular basis (i.e. counselling; diagnostic assessments; drug and alcohol counselling; food bank; clothing exchange etc) : 6). Describe community initiatives your agency has participated in to address wellness in your community (i.e. embrace for life walk; food drive; etc.) 7). List past programs (within the last two years) your agency has provided to address CYMH issues that are no longer funded 8). Do you feel the needs of child and youth mental health issues are being met in the territory? 9). What other, if any other programs or services do you feel would benefit children and youth dealing with mental health issues? 10). Other Comments Needs Assessment For Child and Youth Mental Health Services in Nunavut Qaujigiartiit Health Research Centre July 2010 42child-and-youth
Makimautiksat Youth Camp Program Evaluation 2010-2015Ceporah Mearns, Gwen Healey

This report contains the final evaluation and analysis of the six pilots of the Makimautiksat Wellness and Empowerment camp, the evidence-based, culturally competent intervention promoting mental health and wellness among youth in …

EnglishᐃᓄᒃᑎᑐᑦDRAFT Makimautiksat Youth Camp Program Evaluation 2010-2015 Qaujigiartiit Health Research Centre FEBRUARY 2015 Makimautiksat Youth Camp: Program Evaluation 2010-2015 1 DRAFT This report was prepared by: Ceporah Mearns, BA, Youth Research Coordinator and Gwen Healey, PhD Candidate, Executive and Scientific Director Qaujigiartiit Health Research Centre 764 Fred Coman Dr. Iqaluit, NU X0A 0H0 This report provides the evaluation information for a project which was made possible with funding from the Public Health Agency of Canada. The views expressed herein do not necessarily reflect the view of the Public Health Agency of Canada. The citation for this report is: Mearns, C. and Healey, G.K. (2015) Makimautiksat Youth Camp: Program Evaluation 2010-2015. Iqaluit, NU: Qaujigairtiit Health Research Centre Makimautiksat Youth Camp: Program Evaluation 2010-2015 2 DRAFT Table of Contents Summary of Findings 4 Areas of Success 4 Future Directions 5 Introduction 6 Background 7 The Eight Ujarait/Rocks Model 7 Development of the Eight Ujarait/ Rocks Model 8 Makimautiksat Camp Structure 9 Evaluation Approach 11 General Program Comments 13 Evaluation Findings 15 Camper perspectives 15 Camper Perspectives 6-months post-camp 17 Parent Perspectives 17 Facilitator Perspectives 18 Youth Mentor Perspectives 20 Reflections from the Makimautiksat Coordinator 20 Conclusions 21 References 22 Makimautiksat Youth Camp: Program Evaluation 2010-2015 3 DRAFT Summary of Findings This document contains the final evaluation and analysis of the six pilots of the Makimautiksat Wellness and Empowerment camp; the evidence-based, culturally competent intervention promot�ing mental health and wellness among youth in Nunavut. Makimautiksat and the Eight Ujarait/ Rocks Model were developed by Qaujigiartiit Health Research Centre and will be piloted in six Nunavut communities between 2011-2013. Six communities participated in pilots of the Makimau�tiksat Youth Camp between 2010-2013, the results of which are shared here. Areas of Success • Campers claimed it as “an experience of a lifetime” and that they learned how to deal with different emotions. • The data from parents, campers and facilitators indicate that the activities in the program fos�tered physical, mental, emotional and spiritual wellness and supported a holistic perspective of wellness. The camp promoted knowledge sharing with community members and role models, thereby strengthening relationships between youth and members of the community. These relationships are important connections for youth as they move into adulthood. • Overall, the camp promoted team-building with peers, a sense of unity among the group, and connection to the community at large. • Campers reported an increase in interest in participating in community and land-based activi�ties after the camp, because it was fun, educational, they valued the land, and they valued the role of the land/water in Inuit culture. • Campers reported feeling more happy, cheerful, and energetic, an a decrease in feeling sad and feeling miserable after participation in the camp. • Campers indicated they felt better prepared to plan for their future, set goals for themselves, and understood their personal strengths • Overall, facilitators indicated that the modules were well-developed and helpful. They envi�sioned full-time facilitators delivering Makimautiksat Youth Camp programs in Nunavut com�munities and expressed a desire to see Makimautiksat run in their communities on a more regular basis. • All of the facilitators reported never having had a curriculum to follow for youth camps before, and very much valued the Makimautiksat curriculum book and planning guides. They indicat�ed they would absolutely use it again. They appreciated the way the curriculum was orga�nized, that it reflected Inuit knowledge and community relationships, and that it provided a Makimautiksat Youth Camp: Program Evaluation 2010-2015 4 DRAFT clear plan and direction for camp delivery. The curriculum guide was one of the highlights for facilitators in each community. • Parents felt that the goal to enhance the skills and knowledge of Nunavut youth to support their mental health over the life span, was achieved, and that the experience brought joy to the youth, they learned more about culture, that it was an opportunity learn new information and coping skills. • At the camp graduation ceremonies in some of the communities, parents took the micro�phone to share emotional expressions of joy and gratitude for the opportunities given to their child/ward through the camp. Parents reported seeing significant positive behaviour and atti�tude changes in the children. • Parents expressed pride for the camp program itself, that is was developed by Nunavummiut for Nunavummiut, and felt that the values and knowledge shared in the camp were indicative of this. Parents wanted to see the camp continue and expressed that continuity of the camp was extremely important to them, and that it should be offered through schools as well as in the community. • Parents indicated that their child was more helpful, happier, and aware of respecting others. They reported observing an increase in confidence in their child and that they were better prepared to deal with difficult situations. Parents stated that the camp allowed youth to make friends; relax their minds; participate in more activities; increases independence; and that the camp is a good experience for youth. Future Directions • The Makimautiksat Youth Camp should be developed into a school curriculum resource for Nunavut schools. • Continue to raise awareness about the positive benefit of this program to seek funding for its on-going delivery and to collaborate with Government of Nunavut to develop a plan for deliv�ery. • Seek core, sustainable funding for program delivery and on-going evaluation of the program in the long term. Makimautiksat Youth Camp: Program Evaluation 2010-2015 5 DRAFT Introduction Qaujigiartiit is an independent, non-profit community research centre governed by a volunteer board of directors. Qaujigiartiit Health Research Centre enables health research to be conducted locally, by Nunavummiut, and with communities in a supportive, safe, and culturally sensitive and ethical environment, as well as promote the inclusion of both Inuit Qaujimajatugangit and western sciences in improving the health of Nunavummiut. Mental health and wellness is the number one priority of the research centre. In 2010, Qaujigiartiit Health Research Centre was granted 5 years of funding for a programme of research entitled Child and Youth Mental Health and Wellness Intervention, Research and Community Advocacy in Nunavut. The purpose of this project has been to research, develop, implement, and evaluate child and youth mental health and wellness initiatives in Nunavut that focus on Northern and community�based ways of understanding and knowing about healthy children and youth. Funding for this pro�gramme of research was provided by the Public Health Agency of Canada. The development of an evidence-based youth camp program to support positive adolescent men�tal health development was one component of the Child and Youth Mental Health Intervention, Re�search and Community Advocacy Project in Nunavut. The driving force behind this program com�ponent were the significant number of requests Qaujigiartiit received from communities to engage in a project to develop a culturally-responsive model for supporting Nunavut youth land camps. Qaujigiartiit worked with many partners to fulfill this need, including: the Nunavut Dept. of Health, Nunavut Tunngavik Inc., Public Health Agency of Canada, Arviat Community Wellness Centre, the Cambridge Bay Community Wellness Centre, and other community organizations. The result of a series of literature review partner discussions, and community consultations, was the development of the Eight Ujarait/Rocks Model for Youth Wellness Camps in Nunavut, and re�sulting the Makimautiksat Youth Camp program and curriculum guide. Makimautiksat is an evi�dence-based, culturally relevant, youth intervention camp developed to promote mental health and wellness among children and youth in Nunavut in response to the needs of communities. It was developed by Nunavummiut for Nunavut youth. The Eight Ujarait/Rocks Model was developed us�ing the input from community members, service providers and informed by grey and academic lit�erature. The camps were conducted during the summer and delivered in collaboration with enthusiastic facilitators from the organizations listed in Table 2. Makimautiksat Youth Camp: Program Evaluation 2010-2015 6 DRAFT TABLE 2: Partner Organizations for Makimautiksat Camp Pilots By Community Background The Eight Ujarait/Rocks Model The Eight Ujarait/Rocks Model, is the evidence-based model upon which the Makimautiksat Youth Camp curriculum was based. The model was developed from a series of literature reviews and community consultations in 2010 and 2011. The model includes the following modules 1. Strengthening Coping Skills; 2. Inuuqatigiitiarniq (being respectful of others): Building Healthy & Harmonious Relation�ships; 3. Timiga (my body): Nurturing Awareness of the Body, Movement & Nutrition; 4. Sananiq: Crafting and Exploring Creativity; 5. Nunalivut (our community): Fostering Personal & Community Wellness; 6. Encouraging Self Discovery & Future Planning; 7. Understanding Informed Choices and Peer Pressure; 8. Avatittinik Kamatsiarniq Celebrating the Land: Connecting Knowledge and Skills on the land. The Eight Ujarait/Rocks Model was developed to provide a foundation for the Makimautiksat Cur�riculum and to bring Inuit knowledge and western knowledge together to address mental health and wellness for youth. The model takes the shape of a qammaq ring - anchor points for the edges of a skin tent. C OMMUNITY P ARTNERS Cambridge Bay Kitikmeot Inuit Association Arviat Hamlet of Arviat and the Arviat Wellness Centre Iqaluit Nunavut Tunngavik Inc. and Nunavut Dept. of Health and Social Services Pangnirtung Making Connections/Hamlet of Pangnirtung Coral Harbour Kaajuuq Youth Centre Makimautiksat Youth Camp: Program Evaluation 2010-2015 7 DRAFT FIGURE 1: The Eight Ujarait/Rocks Model Development of the Eight Ujarait/ Rocks Model In 2007, the Board of Directors of the Qaujigiartiit Health Research Centre, in Iqaluit, NU identified child and youth mental health and wellness as a priority issue to champion at our Centre. In 2010, Qaujigiartiit received funding from the Public Health Agency of Canada to implement our Child and Youth Mental Health and Wellness Research, Intervention and Community Advocacy Project in Nunavut. Qaujigiartiit developed the Eight Ujarait/Rocks Model based on community consultation, extensive literature reviews, and input from child and youth service providers through�out the territory in 2009 and 2010. In the summer of 2011, Qaujigiartiit piloted the "made in Nunavut by Nunavummiut" Makimautiksat Youth Wellness and Empowerment camp in Cambridge Bay with the Kitikmeot Inuit Association and in Arviat with the Arviat Wellness Centre. In 2012, Qaujigiartiit partnered with Nunavut Tunngavik Incorporated and the Government of Nunavut to pilot Makimautiksat in Iqaluit and with Making Connections for Youth in Pangnirtung. In 2013, Makimautiksat was delivered in Coral Harbour with the Kaajuuq youth centre and returned to Pangnirtung for a 2nd offering with Making Connections. Makimautiksat Youth Camp: Program Evaluation 2010-2015 8 Strengthen Coping Skills Self-discovery and Future Planning Sananiq Nunalivut Our Community Crafting and Cre�ativity Timiga My Body Inuuqatigiittiarniq Healthy Relationships Informed Choices and Peer Pressure Avatittinik Kamatsiarniq Cel�ebrating the land DRAFT What is unique about this youth wellness intervention is that it has incorporated the voices and re�quests of Nunavummiut into the following core components: 1. Culturally competent and relevant learning modules including Inuit specific traditional activities and promotion of Inuit Qaujimajatuqangit (Inuit knowledge); 2. Activities which foster physical, mental, emotional and spiritual wellness (holistic per�spective of wellness); 3. Activities and knowledge sharing, which promote team-building, a sense of unity and connection to the broader community; and 4. Provision of country food whenever possible. Each community that piloted Makimautiksat was able to deliver the material and activities based on the needs and strengths of its participants, facilitators and community speakers. Makimautiksat Camp Structure The basic structure of the Makimautiksat Youth Wellness and Empowerment Camp was as follows: • Facilitator pairs have the option to offer the program in English, Inuktitut or Inuinnaqtun (or a combination of languages), in the language the facilitator feels most comfortable using; • Activities focus on strengths-based group activities. Topics and themes are addressed through group discussions and hands-on learning activities; • Target audience is youth ages 9-12; • Makimautiksat is a youth-focused intervention to address promote positive mental health and wellness that was created by Nunavummiut for Nunavummiut; • The curriculum consists of eight learning modules which are based on the Eight Ujarait/ Rocks Model. • The eight modules are delivered over 8 to 10 days, including two to three day on-the-land component. • Each module promotes community engagement by engaging community members as guests to share knowledge and/or participate in activities related to the topic of the day. • The land component is a two to 3 day excursion to a location chosen by the facilitators and outfitter. For the land component, campers participaed in activities such as catching, clean�ing, and preparing dry fish, setting up a camp, camp safety, learning about wildlife, the land, and our relationship with our environment. Makimautiksat Youth Camp: Program Evaluation 2010-2015 9 DRAFT • Another important component of the camp is providing daily meals, healthy snacks, and pro�viding country food. Resources provided to each Makimautiksat pilot site: • Copies of the curriculum manual • Necessary supplies, which include art supplies, extra camping gear, a SPOT emergency response transmitter, posters, and first aid kit. • Facilitators were provided with a training planning guide for planning and delivery of the Makimautiksat Camp. • All campers were provided with camp t-shirts, water bottles, and folders for taking home materials they created or wanted to keep. Makimautiksat Youth Camp: Program Evaluation 2010-2015 10 DRAFT Evaluation Approach This intervention research project was designed and implement�ed in partnership with community wellness or youth centres in each of the pilot communities, as well as territorial partners at the Government of Nunavut and Nunavut Tunngavik Inc. The re�searchers were from Nunavut and familiar with community and territorial research protocols. Pilot sites were selected through an invitation process, which was initiated in 2010. Qaujigiartiit Health Research Centre invited community wellness and youth centres to participate in the pilot of the program. Many of the centres who participated in the earli�er consultations for the development of the Eight Ujarait Model also self-identified for participation in the pilots. A site visit was conducted at each community before final selection as a pilot site. Requirements for participation in the pilot included a mini�mum of 2 community members identified to be trained as facilita�tors; a supportive community organization with which to partner (i.e. the municipality, the youth centre, the wellness centre, etc.); logistical arrangements (i.e. space); and a licensed outfitter for the land component. A licensed outfitter was required for insur�ance purposes. TABLE 1: Facilitators, Youth Mentors, and Participants By Community The purpose of the evaluation was to explore the camp model as a successful delivery method for the transfer of information about particular health issues such as wellness, self-esteem, confidence, creativity, future planning; contributing to the development of positive Inuit identity; and whether F ACILITATORS Y OUTH M ENTORS P ARTICIPANTS Cambridge Bay, June 2010 3 2 10 Arviat, August 2010 2 1 7 Iqaluit, June 2012 2 4 8 Pangnirtung, July 2012 2 2 8 Pangnirtung, July 2013 3 n/a 8 Coral Harbour, August 2013 3 n/a 7 TOTAL 15 9 48 Makimautiksat Youth Camp: Program Evaluation 2010-2015 11 Camper helps prepare lunch for her fellow campers DRAFT campers enjoyed participating in this type of program. In addition, the evaluation examined whether instructors felt confident with the material; enjoyed participating; and observed positive changes in the youth over the course of the intervention. The research framework focused on Inuit ways of knowing, specifically following the Piliriqatigiinniq Partnership Community Health Research Model (Healey and Tagak Sr. 2014). The model highlights five Inuit concepts, which informed the research approach: Piliriqatigiinniq (the concept of working together for the common good); Pittiarniq (the concept of being good or kind); Inuuqatigiinniq (the concept of being respectful of others); Unikkaaqatigiinniq (the philosophy of story-telling and/or the power and meaning of story); and Iqqaumaqatigiinniq (the concept that ideas or thoughts may come into ‘one’). As such, the evaluation was collaborative with the constant engagement of the community pilot sites and their teams; the evaluation process was respectful of people, partners, and perspectives; the data analysis process placed a high value on storytelling and the stories of the campers, facilitators and parents; and the analysis focused on the immersion and crysalization of themes. An evaluation questionnaire tool was developed from a combination of sources, which included: • Keyes Mental Health Continuum Short Form Questionnaire (Keyes 2002) • SHAPES Mental Fitness Module (Propel Centre 2007) • Qanuippitali Inuit Health Survey (Galloway and Saudny 2012) • Additional short answer program-specific questions The questionnaire tool was developed in partnership with community partners. The tool was used collect data in each community via: • Pre- and post- camp evaluation forms for campers • 6 month post-evaluation focus groups for campers • Pre- and post-camp evaluation forms for parents • Post-camp evaluations for facilitators • Daily debriefing meetings with the facilitators The surveys were orally administered in English or Inuktitut by the facilitators in each community. The focus groups were also lead by the camp facilitators in each pilot community. Qualitative data were collected through unstructured, informal discussions with facilitators and parents. The Maki�mautiksat Coordinators (Noah and Mearns) also noted observations over the course of the Maki�mautiksat pilots, which were included in the analysis of the data. Data were analysed through a process of ‘immersion and crystallization’ (Borkan 1999) which, from the perspective of the researcher, is a process that is analogous to the Inuit concept of Iqqau�maqatigiiniq, “all knowing coming into one”. Through a process of listening to interviews, reading and re-reading transcripts and stories, themes crystalized in the data. A rigourous, respectful, and mindful process was followed for the data analysis, which included: the comparison of findings to the known literature on the topic (Morse, Barrett et al. 2002); an iterative data collection and analy�Makimautiksat Youth Camp: Program Evaluation 2010-2015 12 DRAFT sis process (Strauss and Corbin 1990); and respecting the story-telling nature of our culture and the data therein (Wilson 2008, Healey and Tagak Sr. 2014). General Program Com�ments Camper Recruitment The recruitment of participants varied by community and was led by the facilitator pair in each location. Facilitators dis�tributed information and put out a call for campers among their networks and within their communities. They also advertised through social media, radio, posters, and word of mouth. Recruitment took place approx. 2 weeks ahead of time. Some communities hosted a drop-in registration event where parents were able to register their child(ren) for camp, and where pre-camp evaluation forms were adminis�tered. This was also an opportunity for the campers and parents/guardians to meet facilitators and coordinator. Program planning The facilitator training included a focus on program planning, using a delivery method that was in�teractive, and strived to create an inclusive learning environment During the training sessions, the trainer allocated time in the schedule the facilitator pairs to work on planning as a team or as a whole group. The planning section of the Makimautiksat curriculum was an asset for the facilita�tors. It outlined each activity, allocated space for notes,ideas, brainstorms, and observations. Pre-camp preparations included regular communication between the coordinator (at Qaujigiartiit) and the with facilitiators (in the community), which included update on progress of planning. The Makimautiksat Youth Camp: Program Evaluation 2010-2015 13 Top image: Elder and Grandmother of a participant teaching the youth how to dry fish in Pangnirtung Bottom image: Campers in Coral Harbour build a saputit for catching Arctic Char DRAFT coordinator travelled to the community to provide additional support for last minute planning, prior to the beginning of camp. Planning meetings were productive and assisted with the delegation of tasks for planning and implementation. Training Training sessions took place each year (2011, 2012, and 2013) approximately 1 month prior to the start of camp. Each training session was 3-days in length, with approx. 8 facilitators in each ses�sion. Evaluations were administered to facilitators pre-and post-training. The responses from the evalua�tions contributed to the improvement of future training sessions. Feedback included the addition of more hands-on and practice-based activities and role-playing scenarios. The training program covered all curriculum modules, as well as sessions where facilitators could practice activities, and lead activities, with a planning portion after each module. This proved to be a helpful strategy. Al facilitators were also provided with an additional 2-day First Aid training certification if they were not already certified. On-the-land component The on-the-land component provided youth with the oppor�tunity to put knowledge into action. The campers were lead by licensed outfitters and experienced hunters to ensure safety. The guides were an asset for the camp and provided valuable lessons for campers. This was one of the most highly regarded aspects of the camp by campers, facilita�tors, and parents. Planning and delivery of this component required facilitators to be flexible and open to change at short notice. Weather conditions, availability of licensed outfitters, and guides posed challenges, however, all six pilot sites were able to deliver the on-the-land component with few delays. Guest Speakers Guest speakers were an important component of the pro�gram. Speakers included community experts in the arts, el�ders, health professionals, law enforcement, and other inspi�rational youth. The speakers were chosen to speak on the topic of the day. To supplement the learning concepts in each module, a guest speaker was invited to share expertise on the concept presented that day. The contributions made by the guest speakers were invaluable. Knowledge and stories Makimautiksat Youth Camp: Program Evaluation 2010-2015 14 Top image: Campers pose in front of presentation on healthy sexuality at Arviat pilot Bottom image: Campers find a kanajuq (sculpin) while exploring the tidal flats at the camp in Pangnirtung. DRAFT on topics such as healthy relationships, sexual health, Inuit visual and performance arts, and music provided additional perspectives from community members that they campers may have not known, and helped build connections with those individuals. Evaluation Findings Camper perspectives Pre- and post-camp surveys were administered at all pilot sites. Respondents were asked a se�ries of questions to measure the feelings, ob�served changes, and lessons learned from camp as related to personal mental health and wellness and sense of happiness. Overall, campers reported an increase in inter�est in participating in community and land-based activities, and very much enjoyed participating in the program. Respondents were asked “after attending Maki�mautiksat would you handle problems with fami�ly, friends, or difficult emotions differently than you would have before the camp.” Respondents indicated that they had learned how to deal with different positive and negative emotions. Re�spondents indicated that after having participat�ed in Makimautiksat, camp they were more likely to participate in community or land-based activi�ties such as hunting, boating, sewing, and spending time on the land for pleasure. When asked how they would handle problems with family, friends, or difficult emotions, after participating in camp, respondents indicated that they were more likely to ask for help, or tell a par�ent/ guardian how they felt than before. Also, respondents were more likely to talk about what they wanted to happen to to solve the problem, and to talk about how the problem made them feel. In general, campers responded with a a feeling that they felt comfortable to express themselves. When asked about specific emotions that they felt over the course of the camp, campers reported feeling more happy, cheerful, and energetic, an a decrease in feeling sad and feeling miserable. Makimautiksat Youth Camp: Program Evaluation 2010-2015 15 Top: Campers from Cambridge Bay learn how to dry fish, a traditional activity practiced by generations. Part of the hands-on learning offered during the on-the-land component of the camp Below: Campers from Pangnirtung work together to put up a tent. DRAFT When asked if attending Makimautiksat helped them handle problems with family, friends, or dif- ficult emotions, respondents affirmed it helped them. Campers indicated that they would have liked more friends from school to have participat�ed in camp with them (i.e. that the camp had ac�commodated a larger group). They also talked about how they learned ‘right from wrong’ while participating in the camp, as well as communica�tion skills and problem solving. Twenty-nine of 33 respondents in the post-camp surveys indicated that after attending Makimau�tiksat campers they felt better prepared to plan for their future by setting goals for themselves and understanding their personal strengths. Campers indicated that favourite activities includ�ed, outdoor activities, playing games and paint�ing, and spending time on the land hunting, fish�ing, and camping. When asked if they would recommend Makimau�tiksat Youth Wellness and Empowerment Camp to a friend, that indicated ‘yes’ and reasons in�cluded, that it was an opportunity to make friends, an opportunity to learn new things, and that it was ‘fun!’ When asked to list things that they learned about themselves, their community, or their culture, campers indicated that they had an opportunity to make more friends; be physically active; to have respect for themselves; go on the land; Inuit culture; self-empowerment skills; and healthy re�lationships. Campers indicated that they had fun and won�dered if the camp would return to their communi�ty the next year. Makimautiksat Youth Camp: Program Evaluation 2010-2015 16 Top image: Campers from Coral Harbour with big smiles Middle image: Campers from Arviat taking a break from activities for a photo. Bottom image: Campers in Cambridge Bay celebrate their accomplishment at the end of camp DRAFT Camper Perspectives 6-months post�camp Campers indicated that they would handle problems with family, friends, or difficult emotions differently than they would have before camp, for example, they were more aware of problems and that they were capable of helping others by offering advice or listening. 6-months after camp, campers indicated they still felt capa�ble and interested in preparing for their future, goal-setting, and understanding their personal strengths. When asked to list things they learned about themselves, their community, or their culture, six months after attending Makimautiksat, one respondent indicated “I am smart,” ex�pressing a positive image of himself/herself; while others shared that they were aware of their ability to develop and foster hunting skills and a connection to their culture. Campers also indicated that they were able to complete activities with confidence (e.g going to school on time), which they did not feel they were capable of doing before. Campers indicated that the youth learned a lot of informa�tion and asked when the camp would come back to their community. Parent Perspectives Parents and guardians indicated that their children wanted to get more involved in school activities, the youth centre, the Junior Canadian Rangers, and playing sports after participating in the camp. When asked if 1 their child talked about their experiences at Makimautiksat at home, parents/guardians indicated that their children expressed excitement, discussed the lessons they learned from elders, talked about healthy lifestyles, and their excitement for the on the land trip. When asked what new skills or information the hoped their child/ren would learn at Makimautiksat, parents/guardians indicated they wanted them to learn to be happy, to learn about Inuit culture, and to respect others. Parents/guardians reported that they felt this had been achieved and more. When asked if they felt that their relationship with their child had changed over the course of the Makimautiksat camp, changes reported included that their child was more helpful at home, more The Junior Canadian Rangers is a branch of the Canadian Rangers, a program for youth 12-18 in remote communities in Canada. 1 Makimautiksat Youth Camp: Program Evaluation 2010-2015 17 Top Image: Facilitator brainstorms with campers on the meaning of ‘Gratitute” Bottom Image: List of how the campers show their family and friends they care. DRAFT open about discussing culture, and overall a more communica�tive relationship as child became vocal about stories and feel�ings related to the camp. When asked if they felt their child was prepared to handle diffi- cult feelings or life situations, parents/guardians indicated that their child was happier, aware of respecting others, and more confident, which they felt would contribute positively to their ability to deal with difficult situations. When asked if they would recommend to their friend’s child to attend, one respondent stated that they would because the camp allowed the youth to make friends, relax their mind, and participate in more activities. For example, some of the youth in the camp had never been on the land before because the fami�ly could not afford the equipment to participate in land activi�ties. Other responses included that the camp was a good experience for the child and increased independence. The overall of perception of the child’s participation in the Makimautiksat Youth Camp, was that the goal to enhance the skills and knowledge of Nunavut youth which will support their mental health over the life span, was achieved, and that the experience brought joy to the youth, they learned more about culture, that it was an opportuni�ty learn new information and coping skills. At the camp graduation ceremonies in some of the communities, parents went up the microphone to share emotional expressions of joy and gratitude for the opportunities given to their child/ward through the camp. Parents reported seeing significant behaviour and attitude changes in the chil�dren. Many parents in Nunavut communities live in poverty and while land-based activities are an important part of Inuit culture, for many families the cost of the equipment for these activities is out of reach for them. Parents expressed pride for the camp program itself, that is was developed by Nunavummiut for Nunavummiut, and felt that the values and knowledge shared in the camp were indicative of this. Parents wanted to see the camp continue and expressed that continuity of the camp was extremely important to them, and that it should be offered through schools as well. Facilitator Perspectives All of the facilitators reported never having had a curriculum to follow for youth camps before, and very much valued the Makimautiksat curriculum book and planning guides. They indicated they would absolutely use it again. They appreciated the way the curriculum was organized, that it re�Makimautiksat Youth Camp: Program Evaluation 2010-2015 18 Image: “what makes people feel safe in groups” ; group safety rules that are out�lined at the beginning of each camp. DRAFT flected Inuit knowledge and community relation�ships, and that it provided a clear plan and direc�tion for camp delivery. The curriculum guide was one of the highlights for facilitators in each com�munity. When asked if respondents felt prepared to run Makimautiksat, all respondents indicated that they were well prepared. When asked if there was anything that happened during camp that they were not prepared for, re�spondents indicated that they weren't prepared to be “disconnected” from normal daytime employ�ment (e.g. some facilitators did not do youth pro�gramming on a day-to-day basis, so the experience was new for them). One respondent indicated that they did not feel prepared for the some of the more erratic behavior of some of the campers. When asked if they felt comfortable teaching subjects such as coping skills, self-esteem, peer pressure, substance abuse, sexual health, rand elationships, facilitators indicated that they were comfortable with all subjects except for sexual health. In some cases, they brought in a nurse or community health representative to help with this part. Another respondent indicated that they felt very prepared to present the subjects because they had previous work experience in those areas. When asked if they felt confident in their ability to facilitate group discussions or brainstorms, a fa�cilitators indicated that interactive communication helped accelerate brainstorming, however many facilitators expressed apprehension about managing group dynamics in the initial pilots, so more emphasis was placed on these activities in facilitator training for the later pilots. When asked to list 3 things that went well over the duration of the camp, respondents indicated that food preparation, exercises as part of the daily routine, fishing, spending time outdoors, learn�ing Inuit skills, and learning about healthy relationships were all highlighted. When asked what could have been improved in the camp delivery, general feedback included a request for a bigger budget to deliver the camp. When facilitators were asked if they felt that the goal of Makimautiksat was achieved, they indicat�ed that the campers appeared to have understood the material; that youth matured over the course of the camp; they they felt the youth were more confident; that the land component was an essential part of the camp; that participation in the camp initiated positive changes in the campers; and that they were happy to have the camp in their community. After one camp, facilitators ob�served campers walking around the community in the camp t-shirts picking up garbage and help�ing others in the community. The facilitators noted that this was an action that they never would Makimautiksat Youth Camp: Program Evaluation 2010-2015 19 Image: Campers in Coral Harbour fishing in Saputit a traditional method of fishing. DRAFT have seen before the camp. They felt that the campers developed a cohesive group, which was another positive outcome of the program. Overall, facilitators indicated that the modules were well-developed and helpful. They envisioned full-time facilitators delivering Makimautiksat Youth Camp programs in Nunavut communities and expressed a desire to see Makimautiksat run in their communities on a more regular basis. Youth Mentor Perspectives Youth Mentors from three of the six pilot sites provided evaluation data. After Makimautiksat, youth mentors highlighted that they wished to spend more time on the land for pleasure, particularly hunting, fishing, and boating. When asked about the specific emotions that they felt over the course of the camp, youth mentors reported feeling happy, cheerful, and energetic, and less sad or miserable. When asked to list three of their favorite activities, respondents indicated that camping (on-the�land) was a highlight of the camp. When asked if the respondents would recommend Makimautiksat Youth Camp to a friend, all re�spondents indicated they would. The reasons indicated were because the camp was “fun” and they learned a lot during the camp. When asked to list three things that the respondents learned about themselves, their community, and their culture, respondents highlighted the importance to them that they had learned about Inu�it traditions and camping on the land. When asked if they felt that the goal of Makimautiksat was achieved, youth mentors indicated that they learned about Inuit Qaujumajatuqangit, that the camp was “fun,” and they learned “lots of interesting information”, which aligned with the goals of the camp. Universally, youth mentors indicated that they wanted to see more camps in their community and enjoyed the leadership role they played in the camp. There were some recommendations to make the youth mentor position a paid position instead of a volunteer position for Aulajaaqtut credit hours toward their high school diploma. Reflections from the Makimautiksat Coordinator One primary challenge that I experienced in conducting the evaluation was that the data in the sur�veys was not always aligned with the feedback received from participants, parents/guardians, and facilitators in informal conversations. This highlighted the importance of using a mixed-method study design for the evaluation. Rich data were obtained from facilitators and parents through con�versations outside of camp. For example, parents shared that they saw positive changes in their child’s self-esteem and openness about their troubles in day-to-day life, where youth may have not shared those feelings prior to camp. Often parents would become emotional when sharing these Makimautiksat Youth Camp: Program Evaluation 2010-2015 20 DRAFT stories. This type of data was not captured in the surveys, but was noted in a qualitative explo�ration of the informal data from parents. I also noted the importance of being respectful of existing community relationships and they ways in which programs are implemented in each community. For each pilot, my goal was to engage with the community in the most respectful way. I supported the facilitators with encouragement while facilitators took a leadership role in the planning and implementation of the camp, adapting it to their own community needs. The facilitators had a varied background of experience with facilitat�ing youth activities, however they all shared the common desire to help youth in their community. Some of the facilitators were younger and had less experience leading or facilitating, and mentor�ship from more experienced facilitators and the coordinator was important. Facilitator pairs brought balance and unique and complimentary skills and strengths. Unfortunately, for some of the pilot sites, there were no youth mentors available for the camp. I would fill in where that gap existed. The reason youth mentors were not engaged in those pilots included the need to pursue paid employment and inability to commit to a volunteer position. All pilots of Makimautiksat were held in the summer months, during this break, campers reported they were happy to participate, because it was “something to do,” something “fun.” Campers wanted to attend Makimautiksat to “meet new people” “learn new things.” The evaluation data il�lustrate that they walked away with much more after participating in the camp. Conclusions The results of the evaluation indicate that the Qaujigiartiit HealthResearch Centre has successfully developed an evidence-based youth camp program and curriculum guide, which is culturally com�petent and includes learning modules that include Inuit knowledge and Western knowledge in a series of activities that make a positive contribution toward youth wellness and mental health. The data from parents, campers and facilitators indicate that the activities in the program fostered physical, mental, emotional and spiritual wellness and supported a holistic perspective of wellness. The camp promoted knowledge sharing with community members and role models, thereby strengthening relationships between youth and members of the community. These relationships are important connections for youth as they move into adulthood. Overall, the camp promoted team�building with peers, a sense of unity among the group, and connection to the community at large. The camp program was flexible, adaptable, relevant to the youth and the community, and had a lasting impact on that individuals involved beyond the immediate participation in the program. Long-term monitoring of the participants and on-going evaluations of camps as they continue to unfold across Nunavut, are needed to contribute to the robust evidence base for this program over time Makimautiksat Youth Camp: Program Evaluation 2010-2015 21 DRAFT References Borkan, J. (1999). Immersion/Crystallization. Doing Qualitative Research. (2nd Edition). B. Crabtree and W. Miller. Thousand Oaks, CA:, Sage Publications. Pp.: 179-194. Centre, P. (2007). SHAPES Mental Fitness Module. Waterloo, Canada, University of Waterloo. Galloway, T. and H. Saudny (2012). Nunavut Community and Personal Wellness, Inuit Health Sur�vey (2007-2008). Montreal, OQ, Centre for Indigenous Nutrition and the Environment McGill Uni�versity. Healey, G. and A. Tagak Sr. (2014). "Piliriqatigiinniq 'working in a collaborative way for the common good': A perspective on the space where health research methodology and Inuit epistemology come together." International Journal of Critical Indigenous Studies 7(1): 1-14. Keyes, C. (2002). "The Mental Health Continuum: From Languishing to Flourishing in Life." Journal of Health and Social Research 43(June): 207-222. Morse, J. M., et al. (2002). "Verification Strategies for Establishing Reliability and Validity in Qualita�tive Research." International Journal of Qualitative Methods 1(2): 13-22. Strauss, A. and J. Corbin (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA, Sage Publications, Inc. Wilson, S. (2008). Research is Ceremony: Indigenous Research Methods. Blackpoint, Nova Scotia, Fernwood Publishing. Makimautiksat Youth Camp: Program Evaluation 2010-2015 22child-and-youth
Makimautiksat Youth Wellness and Empowerment Camp

Makimautiksat is an evidence-based youth camp which aims to equip Nunavut youth with critical life skills and knowledge that foster positive mental health and …

EnglishᐃᓄᒃᑎᑐᑦNovember 2014 Makimautiksat is an evidence-based, youth camp, which aims to equip Nunavut youth with critical life skills and knowledge that foster positive mental health and wellness. Makimautiksat is an Inuktitut word, which can be interpreted as ‘building a solid foundation within oneself’. The camp was designed by Nunavummiut for Nunavut youth and was developed to meet the needs of our young people. To inform the design of the program, Qaujigiartiit developed an evidence-based model called the Eight Ujarait/Rocks Model for the camp from community consultations, extensive literature reviews, and input from parents, elders, and child and youth service providers throughout the territory in 2009 and 2010. Between 2011-2013, Qaujigiartiit piloted the Makimautiksat camp in Cambridge Bay with Kitikmeot Inuit Association; in Arviat with the Arviat Wellness Centre & Hamlet; in Iqaluit with Nunavut Tunngavik Incorporated and the Government of Nunavut; in Panniqtuuq with Making Connections for Youth on 2 occasions; and in Coral Harbour with the Kaajuuq Youth Centre. What is unique about this youth camp is that it has incorporated the voices and requests of Nunavummiut into the core components: 1) Culturally responsive and relevant learning modules include Inuit-specific traditional activities and promotion of Inuit Qaujimajatuqangit (Inuit knowledge); 2) Activities fostering physical, mental, emotional and spiritual wellness (holistic perspective of wellness); 3) Activities and knowledge sharing which promote team-building, a sense of unity, and connection to the broader community; and 4) Sharing country food whenever possible. Each community that piloted Makimautiksat was able to deliver the material and activities based on the needs and strengths of its participants, facilitators and community speakers. The Eight Ujarait/Rocks Model includes the following learning ujarait: Ujaraq 1: Strengthening Our Ability to Cope with Difficult Times Ujaraq 2: Inuuqatigiittiarniq - Building Healthy & Harmonious Relationships Ujaraq 3: Timiga - Nurturing Awareness of the Body, Movement & Nutrition Ujaraq 4: Sananiq - Crafting and Exploring Creativity Ujaraq 5: Nunalivut - Fostering Personal & Community Wellness Ujaraq 6: Encouraging Self Discovery & Future Planning Ujaraq 7: Understanding Informed Choices and Peer Pressure Ujaraq 8: Avatittinik Kamatsiarniq Celebrating the Land: Connecting Knowledge and Skills (2 day/night land camp) Nunavummiut requested a Nunavut-specific model, which incorporated strong connections to community, peer teaching, knowledge sharing, skill development, and harvesting/country foods in a program for youth to promote overall wellness. Makimautiksat graduates remain connected Makimautiksat Youth Wellness and Empowerment Camp November 2014 through a Facebook group and ongoing follow up with Qaujigiartiit and the Makimautiksat Facilitators who ran the pilot camps in their communities. Evaluation Findings Graduates of Makimautiksat have described their time at camp as "the experience of a life time" and "something that will remain with me for the rest of my life". What has struck Makimautiksat facilitators and Qaujigiartiit is the desire youth participants shared for giving back to their communities through volunteer and service work after participating in the camp. The sense of community and group acceptance youth had for each other who came from extremely diverse backgrounds was inspiring. Evaluations from parents/guardians included personal observations of their child(ren) pre- and post-camp. One parent/guardian described their child has having more confidence after attending camp, another said their child was “more open about their culture”. When asked if they would recommend the Makimautiksat camp to another family, a respondent indicated that they would because the camp “helped their child make friends, relaxed their minds, and [encouraged them to] participate in more activities.” The data on wellness outcomes for campers who participated suggest: - Youth who participated reported feeling less anger, fear, or sadness then they felt before attending the camp. - Youth reported a greater interest in harvesting, sewing, and other community and land�based activities than before camp. - In general, youth reported feeling happy and excited both before and after participation in the camp. - After participating in the camp, youth reported an increased likelihood of reaching out to a parent or a friend when faced with a problem, than before participating in the camp. - Going on the land and learning about Inuit culture was a highlight for every participant in the camp program. - Youth were asked what skills they learned at camp, and responses included “problem�solving”, “communication”, “ability to make friends”, “learn to do new things”, “healthy relationships” and “having fun”. Feedback from campers, their parents/guardians and facilitators continue to validate the Eight Ujarait Model. For more information about Makimautiksat, contact Ceporah Mearns, Youth Research Coordinator at the Qaujigiartiit Health Research Centre at caporal.mearns@qhrc.ca or visit the website at www.qhrc.ca.child-and-youth
ᐃᓄᓐᖑᐃᓂᖅ ᕿᑐᕐᖏᐅᓂᕐᒧᑦ ᐃᓕᓐᓂᐊᕋᔅᓴᖅ ᓄᓇᕗᑦᒥᐅᓄᑦ

Englishᐃᓄᒃᑎᑐᑦᐃᓄᓐᖑᐃᓂᖅ ᕿᑐᕐᖏᐅᓂᕐᒧᑦ ᐃᓕᓐᓂᐊᕋᔅᓴᖅ ᓄᓇᕗᑦᒥᐅᓄᑦ ᖃᐅᔨᒋᐊᖅᑏᑦ ᐋᓐᓂᐊᖃᓐᓇᖏᑦᑐᓕᕆᓂᕐᒧᑦ ᐃᖃᓗᐃᑦ, ᓄᓇᕗᑦ ᖃᐅᔨᒋᐊᖅᑏᑦ ᐃᒻᒥᒃᑰᖓᕗᑦ, ᑮᓇᐅᔭᓕᐅᕋᓱᐊᖅᑎᐅᖏᑦᑐᑎᒃ ᓄᓇᓕᓐᓂ ᖃᐅᔨᓴᖅᑏᑦ ᓄᓇᕗᑦᒥ. ᓄᓇᕗᑦᒥᐅᑕᐅᔪᒍᑦ ᐱᓕᕆᐊᖃᑦᑐᑕ ᐱᕚᓪᓕᑎᑦᑎᓇᓱᐊᖅᑐᑕ ᐋᓐᓂᐊᖅᑐᓕᕆᓂᕐᒥᒃ ᓄᓇᑦᑎᓐᓂ ᖃᐅᔨᓴᕐᓂᒃᑯᑦ, ᓱᓕᔪᓐᓇᐅᑎᑎᒍᑦ, ᐊᒻᒪᓗ ᐱᓕᕆᓂᒃᑯᑦ. ᑖᓐᓇ ᐃᓄᓐᖑᐃᓂᖅ ᕿᑐᕐᖏᐅᓂᕐᒧᑦ ᐃᓕᓐᓂᐊᕐᕈᑎᔅᓴᖅ ᓴᖅᑭᓚᐅᖅᑐᖅ ᐊᕐᕋᒍᓄᑦ 2.5 ᖃᐅᔨᓴᖃᑦᑕᓚᐅᖅᑐᑎᒃ ᐊᒻᒪᓗ ᐅᖃᓪᓚᖃᑎᖃᖃᑦᑕᓚᐅᖅᑐᑎᒃ ᐊᒥᓱᓂᒃ ᑲᑐᔾᔨᖃᑎᒌᓂᒃ ᐊᒻᒪᓗ ᓄᓇᓕᓐᓂᑦ. ᖃᐅᔨᒋᐊᖅᑏᑦ ᐆᑦᑐᕋᐅᑎᖃᒻᒪᑕ, ᖃᐅᔨᓴᖅᑐᑎᒃ, ᐊᒻᒪᓗ ᐋᖅᑭᒋᐊᖅᑎᕆᓪᓗᑎᒃ ᑖᒃᓱᒥᖓ ᑐᓐᖓᕕᖃᑦᑐᑎᒃ ᓱᓕᔪᓐᓇᐅᑎᓂᒃ, ᐃᓕᖅᑯᓯᕐᒨᖓᔪᒥᒃ ᕿᑐᕐᖏᐅᓂᕐᒧᑦ ᐱᓕᕆᐊᕐᒥᒃ ᐅᖓᑖᓄᑦ ᑎᓴᒪᑦ ᐊᕐᕋᒍᑦ ᓴᖅᑭᑕᐅᔪᒫᓐᓂᐊᖅᑐᓂᒃ ᐊᑐᖅᑕᐅᔪᓐᓇᓛᕐᒪᑦ ᓄᓇᕗᑦᒥ. ᐊᑐᐃᓐᓇᐅᒍᒫᖅᑐᖅ ᓄᓇᕗᑦᒥ ᐊᑭᖃᖏᓪᓗᓂ. ᐱᒋᐊᖅᑎᓯᒪᔭᕗᑦ ᑖᓐᓇ ᐃᓄᓐᖑᐃᓂᖅ ᐱᓕᕆᐊᔅᓴᖅ ᓴᖅᑭᑕᐅᖁᔭᐅᓯᒪᓂᖓᓄᑦ ᓄᓇᕗᑦᒥᐅᓄᑦ ᐃᓕᖅᑯᓯᕐᒨᖓᔪᒥᒃ ᕿᑐᕐᖏᐅᓂᕐᒧᑦ ᐱᓕᕆᐊᒃᓴᖅ ᑕᐅᑐᒐᖃᑦᑐᒥᒃ ᐊᑦᔨᐅᖏᑦᑐᓂᒃ ᐱᔪᒪᓂᖃᓐᓂᑎᓐᓄᑦ. 6−ᖑᕗᑦ ᐃᓕᓐᓂᐊᕈᑎᔅᓴᐃᑦ ᑕᕝᕙᓂ ᐃᓕᓐᓂᐊᕐᕋᔅᓴᒥ ᑕᑯᓐᓈᒐᖃᑦᑐᑦ ᐅᑯᓂᖓ: 1) ᐃᓅᓂᖅ ᐃᓅᓯᑦᑎᐊᕙᒻᒥᒃ; 2) ᐃᓚᒌᑉᐸᓪᓕᐊᓂᖅ 3) ᐃᓄᓐᖑᐃᓂᖅ− ᐃᓕᓴᐃᓂᖅ ᐆᒪᑎᒧᑦ; 4) ᐱᓕᒻᒪᓴᕐᓂᖅ; 5) ᑐᓴᐅᒪᖃᑦᑕᐅᑎᓂᖅ; 6) ᐃᓚᒌᑦ ᓂᕆᑦᑎᐊᖃᑦᑕᕐᓂᖏᑦ. ᐅᓄᖅᑐᑦ ᑐᓴᕋᔅᓴᐃᑦ ᑕᕝᕙᓂ ᐃᓕᓐᓂᐊᕐᕈᑎᔅᓴᒥᒃ ᐱᔭᐅᓯᒪᔪᑦ ᓄᓇᕗᑦᒥ ᐃᓕᓐᓂᐊᖅᑐᓕᕆᔨᒃᑯᑦ ᐃᓐᓇᐃᑦ ᐅᖃᐅᔾᔨᒋᐊᖅᑎᖏᓐᓂᑦ ᐊᒻᒪᓗ ᖁᔭᒋᕙᕗᑦ ᐃᓐᓇᐃᑦ ᐅᖃᐅᓯᕐᒥᓂᒃ ᑐᓴᖅᑎᑦᑎᓚᐅᖅᑐᑦ ᐊᒻᒪᓗ ᐃᓕᓐᓂᐊᖅᑐᓕᕆᔨᒃᑯᓐᓂᑦ ᐊᔪᓐᖏᑎᑦᑎᓚᐅᕐᒪᑕ ᑎᑎᕋᖅᑕᐅᑎᑦᑎᓪᓗᑎᒃ ᑎᑎᕋᖅᓯᒪᔪᖁᑎᖏᓐᓂᒃ ᑖᓐᓇ ᐱᓕᕆᐊᕐᖑᓇᓱᐊᖅᑐᖅ ᐱᑦᔪᑎᒋᓪᓗᒍ.. ᖃᐅᔨᒋᐊᖅᑏᑦ ᐱᓕᕆᖃᑎᖃᑉᐳᑦ ᐊᒥᓱᓂᒃ ᐱᓕᕆᖃᑎᒌᓂᒃ ᐱᔭᒃᓴᖅ ᐱᓕᕆᐊᖑᔪᓐᓇᖁᓪᓗᒍ, ᑖᒃᑯᐊᓗ ᓄᓇᕗᑦᒥ ᐋᓐᓂᐊᖃᓐᓇᖏᑦᑐᓕᕆᔨᒃᑯᑦ ᐃᓄᓕᕆᔨᒃᑯᓪᓗ, ᓄᓇᕗᑦᒥ ᐃᓕᓐᓂᐊᖅᑐᓕᕆᔨᒃᑯᑦ, ᓄᓇᕗᑦ ᑐᓐᖓᕕᒃᑯᑦ, ᑭᒃᑯᑐᐃᓐᓇᕐᓄᑦ ᐋᓐᓂᐊᖅᑐᓕᕆᓂᕐᒧᑦ ᐱᔨᑦᑎᖅᕕᐅᔪᖅ ᑲᓇᑕᒥ, ᓄᓇᓕᓐᓂ ᐋᓐᓂᐊᕖᑦ, ᐊᒻᒪᓗ ᓄᓇᓕᓐᓂ ᑲᑐᔾᔨᖃᑎᒌᑦ. ᖃᓄᐃᑦᑑᒻᒪᑦ ᐃᓄᓐᖑᐃᓂᕐᒧᑦ ᐃᓕᓐᓂᐊᕐᕋᔅᓴᖅ? ᑐᓐᖓᕕᓪᓗᐊᑕᕆᔭᐅᔪᑦ ᐃᓄᓐᖑᐃᓂᖅ ᕿᑐᓐᖏᐅᓂᕐᒧᑦ ᐃᓕᓐᓂᐊᕐᕈᑎᔅᓴᐅᑉ: • ᐃᓕᓐᓂᐊᕐᑎᑦᑎᔪᑦ ᐊᐃᑉᐸᖃᓪᓗᓂ ᐃᓕᓴᐃᓂᐊᕐᓗᓂᑎᒃ ᖃᓪᓗᓈᑎᑐᑦ, ᐃᓄᒃᑎᑐᑦ ᐊᒻᒪᓗ/ᐅᕝᕙᓘᓐᓃᑦ ᐃᓄᐃᓐᓇᖅᑐᓐ. • ᐋᖅᑭᒃᓯᒪᓂᖓᑕ ᑐᓐᖓᕕᖓ ᓴᓐᖏᓂᕆᔭᐅᔪᓂᒃ ᑐᓐᖓᕕᓕᒃ, ᑲᑎᓐᖓᓂᒃᑯᑦ ᐅᖃᖃᑎᒌᓐᓂᒃᑯᑦ ᐋᖅᑭᒃᑕᐅᔪᓂᒃ. ᐊᑐᓂᒃ ᐃᓕᓐᓂᐊᕐᓃᑦ ᐱᒋᐊᖅᕕᓖᑦ ᐅᖃᐅᓯᓪᓗᐊᑕᐅᓂᐊᖅᑐᒥᒃ ᐅᖃᐅᓯᕆᔭᐅᓗᓂ ᐊᑦᔨᒌᖏᑦᑐᑎᒍᑦ ᐱᓕᕆᕈᓘᔭᕐᓂᒃᑯᑦ ᐃᑲᕐᕋᓄᑦ 2 -3. • ᑐᕌᖅᑕᐅᓇᓱᐊᖅᑐᑦ ᐊᖓᔪᖅᑳᕆᔭᐅᔪᑦ/ᑲᒪᔩᑦ/ᐱᓯᒪᑦᑎᔩᑦ/ᐃᓚᒋᔭᐅᔪᑦ. ᑭᓇᑐᐃᓐᓇᖅ ᓱᕈᓯᕐᓂᒃ ᑲᒪᒋᔭᖃᑦᑐᖅ ᐅᓪᓘᑉ ᐃᓚᐃᓐᓇᖓᓄᑦ ᐅᓪᓗᑕᒫᖅᓘᓐᓃᑦ.ᑖᓐᓇᓕ ᐃᓕᓐᓂᐊᕐᕋᔅᓴᐅᖏᑦᑐᖅ ᑕᒪᒃᑯᓄᖓ ᐃᓱᒫᓗᓇᖅᑐᓄᑦ ᐊᖓᔪᖅᑲᕆᔭᐅᔪᓄᑦ, ᑭᓯᐊᓂᓕ ᑕᒪᕐᒥᒃ ᐃᓄᐃᑦ ᐸᖅᑭᔪᑦ ᓱᕈᓯᕐᓂᒃ. ᐅᓄᕐᓂᖃᓪᓗᑎᒃ ᑲᑎᓐᖓᔪᑦ 8−ᒥᒃ ᐃᓄᓐᓂᒃ. • ᐃᓄᓐᖑᐃᓂᖅ ᐅᖃᓪᓚᖃᑎᒌᓐᓂᒃᑯᑦ ᐃᑲᔪᕋᓱᐊᕈᑎᐅᖏᓚᖅ. • ᐃᓕᓐᓂᐊᕐᕋᔅᓴᖅ ᐃᓗᓕᖃᑦᑐᖅ 6-ᓂᒃ ᐃᓕᓐᓂᐊᕐᕋᔅᓴᓂᒃ ᐃᓕᓐᓂᐊᕈᑕᐅᓗᓂ ᐅᖓᑖᓄᑦ 18 ᐃᓕᓐᓂᐊᕐᓃᑦ (ᐃᓕᓐᓂᐊᖅᑕᐅᓗᓂ 1-3 −ᕋᓪᓗᑎᒃ / ᐱᓇᓱᐊᕈᓯᕐᒥ ᒪᓕᓪᓗᒍ ᐃᓕᓴᐃᔨ ᐋᖅᑭᒃᓯᒪᓂᖓ/ᐊᑐᐃᓐᓇᐅᓂᖓᓗ) • ᐊᑐᓂᒃ ᐃᓕᓐᓂᐊᕐᓃᑦ ᐱᖃᓯᐅᔾᔨᖃᑦᑕᕐᓗᑎᒃ ᐃᓐᓇᕐᒥᒃ ᐊᔪᕐᓇᖏᑉᐸᑦ. ᐃᓚᖏᑎᒍᑦ, ᕿᓪᓕᖅᑐᑦ ᑕᕐᕇᔮᑦ ᐃᓐᓇᐃᑦ ᐅᖃᓪᓚᑎᓪᓗᒋᑦ ᐅᕝᕙᓘᓐᓃᑦ ᐅᓂᒃᑳᑎᓪᓗᒋᑦ ᐃᓚᓕᐅᔾᔭᐅᓯᒪᔪᑦ ᐃᓕᓐᓂᐊᕐᕋᔅᓴᓂ ᑕᒪᒃᑯᐊ ᐃᓐᓇᐃᑦ ᐊᑐᐃᓐᓇᐅᓂᓐᖏᑉᐸᑕ ᐅᕝᕙᓘᓐᓃᑦ ᓂᓪᓕᐊᔭᕆᐊᔅᓴᖅ ᐊᑲᐅᒃᓴᖏᑉᐸᑕ ᐅᖃᐅᓯᕆᔭᐅᔪᒧᑦ. • ᐊᑐᓂᒃ ᐃᓕᓐᓂᐊᕐᕈᑎᑦ ᐃᓚᓕᐅᔾᔨᓂᐊᖅᑐᑦ ᓄᓇᐅᑉ ᐃᓚᖏᓐᓂᒃ ᐊᑕᐅᓯᕐᒥ ᐃᓕᓐᓂᐊᕐᓂᕐᒥ, ᑭᓯᐊᓂ ᐅᖓᑖᓅᖅᑕᐅᔪᓐᓇᖅᑐᖅ. ᐃᓘᓐᓇᓂ ᐃᓕᓐᓂᐊᕐᕈᑎᔅᓴᖅ ᐃᓕᓐᓂᐊᖅᑕᐅᔪᓐᓇᖅᑐᑦ ᓄᓇᒥ ᑕᐃᒪᐃᒍᒪᒍᑎᒃ. • ᕿᑐᕐᖏᐅᓂᕐᒧᑦ ᐃᓕᓐᓂᐊᕐᕈᑎ ᐱᑕᖃᑦᑎᑦᑎᔭᕆᐊᓕᒃ ᓱᕈᓯᓕᕆᓂᕐᒥᒃ ᐃᓕᓐᓂᐊᖅᑐᖃᓕᕋᐃᑉᐸᑦ ᐃᑲᔪᖅᑐᐃᓂᐊᕐᒪᑦ ᐊᖓᔪᖅᑳᕆᔭᐅᔪᓂᒃ ᐱᖃᑕᐅᔪᒪᒐᔭᖅᑐᓂᒃ. • ᐃᓕᓐᓂᐊᕐᓃᑦ ᐃᓚᓕᐅᔾᔨᓯᒪᔭᕆᐊᓖᑦ ᓂᕿᓂᒃ (ᑕᒧᓗᒐᒃᓴᓂᒃ ᓄᖅᑲᖓᓕᖅᐸᑕ). ᑖᒃᑯᐊᓗ ᓂᕿᑦᑎᐊᕙᐅᓗᑎᒃ ᐊᒻᒪᓗ ᐃᓄᒃᓯᐅᑎᐅᓗᑎᒃ ᐊᑐᐃᓐᓇᐅᑉᐸᑕ. ᓂᕿᓄᑦ ᒪᓕᒃᑕᐅᔪᓐᓇᖅᑐᓂᒃ ᐱᖃᓯᐅᔾᔨᓯᒪᔪᖃᑉᐳᖅ ᐃᓕᓐᓂᐊᕐᕋᔅᓴᒥ. ᑐᑭᓯᒋᐊᒃᑲᓐᓂᕈᒪᒍᕕᑦ ᖃᐅᔨᒋᐊᕈᓐᓇᖅᐳᑎᑦ ᓕᓕ ᐊᒪᕈᐊᓕᒃᒧᑦ, ᐃᓚᒌᑦ ᐋᓐᓂᐊᖃᑦᑕᐃᓕᒪᓂᕐᒧᑦ ᖃᐅᔨᓴᕐᓂᕐᒧᑦ ᑲᒪᔨᐅᔪᖅ lily.amagoalik@qhrc.ca, 867-975-2523child-and-youth
Parenting Program for NunavummiutGwen K. Healey

Ten communities completed pilots of the Inunnguiniq Parenting Support Program between January and April 2012 and 4 of the original communities participated in pilots of the revised 2nd edition of the Inunnguiniq Parenting Support Program in …

EnglishᐃᓄᒃᑎᑐᑦInunnguiniq Parenting Program for Nunavummiut FINAL EVALUATION 2010-2015 Qaujigiartiit Health Research Centre 2 Inunnguiniq Parenting Program 5-year Evaluation 2014 March 2015 This report was prepared by: Gwen K. Healey, PhD Candidate Executive and Scientific Director Qaujigiartiit Health Research Centre Iqaluit, NU This report can be referenced in the following way: “Qaujigiartiit Health Research Centre (2015). Inunnguiniq Parenting Support Program Final Evaluation Report 2010-2015. Qaujigiartiit Health Research Centre, Iqaluit, NU.” Qaujigiartiit Health Research Centre 2 3 Inunnguiniq Parenting Program 5-year Evaluation 2014 Table of Contents Summary of Findings 5 Areas of Success 5 Future Directions 5 The Goals of the Inunnguiniq Parenting Program 7 The Inunnguiniq Learning Model 7 The Structure of the Inunnguiniq Parenting Program 8 Evaluation Approach 9 Weekly Phone Calls 9 Evaluation Materials Booklets 9 Parent Exit Questionnaires 9 Measuring Success 10 Recruiting Parents 10 The Spectrum of Parents (low risk to high risk) 10 Single Parents 11 Fathers/Men 11 Radio 11 General Program Comments 11 Program Planning 11 Introducing the Program 11 Childcare 12 Land Component 13 Food 13 Participation Levels 13 Facilitator Perspectives 15 Group Type & Number 15 Elders 15 Healing 16 Food 16 Facilitation and Group Skills 16 Challenges 18 The need for healing 18 Communication or Language Barriers 18 Qaujigiartiit Health Research Centre 3 4 Inunnguiniq Parenting Program 5-year Evaluation 2014 Cancelled Classes 18 Timeline 19 Resource Bins 19 Technical Difficulties 19 Successful Approaches 20 Soft starts 20 Group work - Circle discussions 20 Activity-based learning 20 Recognizing and acting on opportunity 20 Partnering with professionals 20 The importance of a safe and comfortable space 20 Elders 21 Food 21 Responsive to immediate needs of the parents 21 Facilitator sharing & honesty 21 Door Prize / Incentive 21 Recognizing accomplishments of participants 21 Curriculum Specific Feedback 22 General Comments 22 Future Directions 27 Appendix A - Parent Evaluation Questionnaire Results 28 Appendix B - Nutrition Evaluation Results 30 Appendix C - Requests & Comments from Facilitators & Parents 31 Facilitator & Parent Requests 31 Facilitator Comments 31 Parent Comments 32 Qaujigiartiit Health Research Centre 4 5 Inunnguiniq Parenting Program 5-year Evaluation 2014 Summary of Findings Ten communities completed pilots of the Inunnguiniq Parenting Support Program between January and April 2012 and 4 of the original communities participated in pilots of the revised 2nd edition of the Inunnguiniq Parenting Support Program in 2013-14. Areas of Success • Overall, parents reported that they enjoyed the program, particularly learning about traditional Inuit perspectives on childrearing and healthy parenting. • Inunnguiniq pilots that regularly involved Elders and the sharing of Inuit parenting practices and traditional lifestyle had the greatest success. • Parents and facilitators found the session on healing had very strong and emotional responses, often continuing into 1-2 more sessions. • The strengths-based, group format was very successful. Facilitators reported that listening and sharing stories with others helped parents feel better about themselves and they provided support to each other. Parents reported transferring this dialogue format into their family life. • Observations highlighted that participants were most comfortable with and responsive to material when they were active and working on something with their hands. • When men participated, it was observed that they participated with more enthusiasm when activities were on the land. • The food and nutritional components of the program were very well received. Parents enjoyed cooking together and the different types of recipes to choose from. • The revised 2nd edition of the curriculum was much easier to work with and to follow. Future Directions • The Inunnguiniq facilitator training session has been revised into 2 streams: a) a 10-day 25 hour course for Early Childhood Education students at Nunavut Arctic College and b) A 5-day intensive 35 hour version that is delivered to community organizations • Continue to raise awareness about the healing component with the Government of Nunavut and offer collaboration to develop a plan for addressing this community�identified need. • Seek core, sustainable funding for program delivery and on-going evaluation of the program in the long term. Qaujigiartiit Health Research Centre 5 6 Inunnguiniq Parenting Program 5-year Evaluation 2014 Introduction History of Inunnguiniq Parenting Program Qaujigiartiit is an independent, non-profit community research centre governed by a volunteer board of directors. Qaujigiartiit Health Research Centre enables health research to be conducted locally, by Nunavummiut, and with communities in a supportive, safe, and culturally sensitive and ethical environment, as well as promote the inclusion of both Inuit Qaujimajatugangit and western sciences in improving the health of Nunavummiut. Mental health and wellness is the number one priority of the research centre. In 2010, Qaujigiartiit Health Research Centre was granted 5 years of funding for a programme of research entitled Child and Youth Mental Health and Wellness Intervention, Research and Community Advocacy in Nunavut. The purpose of this project has been to research, develop, implement, and evaluate child and youth mental health and wellness initiatives in Nunavut that focus on Northern and community-based ways of understanding and knowing about healthy children and youth. Funding for this programme of research was provided by the Public Health Agency of Canada. The development of an evidence-based parenting support program was one component of the Child and Youth Mental Health Intervention, Research and Community Advocacy Project in Nunavut. The driving force behind this parenting program component were the significant number of requests Qaujigiartiit received from communities to engage in a project to develop a culturally-responsive model for supporting Nunavut parents. Qaujigiartiit worked with many partners to fulfill this need, including: the Nunavut Dept. of Health, Nunavut Tunngavik Inc., Health Canada, Public Health Agency of Canada, Arviat Community Wellness Centre, the Cambridge Bay Community Wellness Centre, Tasiuqtigiit Society, the Hamlet of Gjoa Haven and other community organizations. The Inunnguiniq Parenting Program is the result of 5 years of research and consultation with many organizations and communities. Qaujigiartiit piloted, evaluated, and revised this evidence-based, culturally-responsive parenting program prior to releasing it for use in Nunavut. This report outlines the evaluation data from the pilots conducted between 2012 and 2014. The goal of Qaujigiartiit is to continue to operate as a training and evaluation centre for Inunnguiniq Parenting Program, and to continue to revise and update the program over time. Phase 1 In Phase 1 of program development, Qaujigiartiit collaborated with the Government of Nunavut’s Department of Health and Social Services (GN DHSS) for the development of the Nutrition Module of the program, as well as funding and program support for eight pilot sites (Cambridge Bay, Cape Dorset, Clyde River, Coral Harbor, Gjoa Haven, Igloolik, Kimmirut, and Rankin Inlet). Two of these communities were unsuccessful in implementing a pilot of the program (Igloolik and Kimmiruit). QHRC provided funding and support for two communities, Iqaluit and Arviat. QHRC provided program support to Iqaluit and Arviat, as well as for the two Kitikmeot communities, and conducted the data collection and evaluation for all communities. Phase 2 Qaujigiartiit Health Research Centre 6 7 Inunnguiniq Parenting Program 5-year Evaluation 2014 Based on the findings from the Phase 1, the curriculum was revised with the Nunavut Literacy Council to improve the language and flow the material to mirror concepts in adult learning theory. The revised curriculum was piloted in 4 of the original communities in 2013-14: Arviat, Cambridge Bay, Gjoa Haven, and Iqaluit. The Goals of the Inunnguiniq Parenting Program The first goal of the Inunnguiniq Parenting Program is to revitalize the wisdom and practices of inunnguiniq in our lives today. The second goal is to support healing for participants and their families. The third goal is to increase the practice of inunnguiniq in our communities, strengthening the roles of extended family and community in child-rearing. The Inunnguiniq Learning Model In the inunnguiniq learning model, Inuit see everyone in a community as interconnected. In fact, Inuit Elders say we are all both learners and teachers. They say we learn from everyone and everything we interact with. Traditionally, even young children are both learners and teachers. This is because Inuit believe children carry the souls and personalities of their namesakes. So Inuit believe children also carry on their namesakes’ knowledge. The idea of continuous learning is also stressed in inunnguiniq. Inuit Elders have outlined five stages of learning. (We introduced you to these in the Section 1 above). People may all be at different stages of learning. But Inuit believe this is a positive situation. It means there are those who can benefit from our experiences. At the same Qaujigiartiit Health Research Centre 7 The biggest lessons we learned were from what we observed. …Then finally I was on my own to do many things. Of course I made many mistakes because I had not learned everything yet. I discovered that I had many more things to learn and practice. I learned from my own life that I was responsible to teach [others] skills, not by scolding but practicing in order to acquire skills. I had to use myself as an example and suggest ways to teach other skills. Arsene Ivalu, CSS 2005 8 Inunnguiniq Parenting Program 5-year Evaluation 2014 time, it means there are others with experiences that can help us. The role of observation is also an important part of the inunnguiniq learning model. As we mentioned in the section above, Inuit believe practice is essential for the development of proficiency. The Structure of the Inunnguiniq Parenting Program All of these traditional beliefs are reflected in this course. The program has an open structure. It can have a drop-in approach. This allows parents to join at any time and engage at any level. They then can take time away from the course and practice what they learned. Parents can return at a later date to join a different module. Other participants may continue directly from one session to the next. Participants are able to move forward at their own pace. The basic structure of the Inunnguiniq Parenting Support Program is as follows: • Facilitator pairs offer the program together in English, Inuktitut and/or Inuinnaqtun as they desire. • The format is a strengths-based, group discussion design. Each session begins with a central theme that is explored through a range of activities and dialogue over the course of 2-3 hours. • The target audience is parents/care-givers/foster parents/extended family. Anyone who cares for children full- or part-time. This is NOT a program for ‘high-risk’ parents, but is designed for ALL individuals who care for children. Group size should be approximately 8-10, 2 facilitators and a minimum of 1 elder. • Inunnguiniq is not a counselling program. • The program consists of 6 modules taught over 19 sessions (offered 1-3 times per week depending on facilitator comfort/availability) • Each session is to include an elder if possible. In some cases, dvds of elders speaking or telling stories were incorporated into sessions where elders were not available or were not comfortable speaking on a topic. • Each program is to incorporate land components in a minimum of 1 session, but can expand to more. • The parenting program must provide childcare at each session to support parents who wish to attend. • Each session must incorporate a food component (a snack break). The snack must be nutritious and should be country food when availability allows. Recipe ideas are included in the curriculum. The resources provided to each program included: • Each pilot program received 2 copies of these documents in English and Inuktitut at the Qaujigiartiit Health Research Centre 8 9 Inunnguiniq Parenting Program 5-year Evaluation 2014 training: • Inunnguiniq Parenting Support Program Curriculum (Modules 1-5 and a separate volume for Module 6) • Inunnguiniq Parenting Support Program Handbook (additional material for parents and facilitators which included additional stories from elders; additional activities; and an appendix of recipes from community cooking programs in Nunavut • Inunnguiniq Child Development Pamphlets from 0-18 years • Inunnguiniq Evaluation Booklet • Each pilot program received a bin of resources, such as food guides, dvds, cd, posters, pamphlets, and more to complement the activities in the curriculum. Evaluation Approach Information was gathered from each of the communities via the following: 1. Weekly telephone calls from support coordinators to facilitators. Calls lasted approximately half an hour each; notes were recorded on a computer by the project coordinator. 2. An Evaluation Materials book was given to each facilitator at the training. This included written evaluation questions for facilitators to complete after each session (questions were the same for each session); a pre and post Nutrition Module questionnaire for facilitators to ask parents; and a parent exit questionnaire to be completed by parents. 3. Teleconference: During the last week of February all facilitators were invited to join support coordinators for a conference call. Eight facilitators and two program leads called in. Seven communities were represented. Agenda included a sharing of program successes and ideas for overcoming challenges. Support coordinators listened allowing facilitators to provide peer support. Weekly Phone Calls This was the primary mode of data collection and generated the most data. Facilitators shared perspectives, successes and challenges during the phone calls than was expressed in the written documents that were collected. Evaluation Materials Booklets Booklets were submitted from seven of the eight communities. Many facilitators did not answer the questions as asked; they used the pages to record their thoughts and what they did in the session. It became evident that evaluation paperwork was a difficulty for many facilitators. Phone calls proved a more effective method of information collection. Parent Exit Questionnaires The parent exit questionnaire could be administered one-on-one by the facilitator or a parent could fill it out individually. Low literacy and writing skills were reported by some Qaujigiartiit Health Research Centre 9 10 Inunnguiniq Parenting Program 5-year Evaluation 2014 facilitators so they gathered the exit data either in interviews, by conversation, or by observation (See Appendix A for results). Measuring Success The idea of success in this evaluation was based on the following: • Number of participants / repeat participants • Involvement of Elders • Level of facilitator engagement and enthusiasm with program • Ease of use of the curriculum materials • Participant comprehension of and responses to the content and how it is presented • Level of participant responses/interaction with other participants in the program • Participant and facilitator self-reported satisfaction with the program • Stories articulating positive parenting experiences with family during and after the program Recruiting Parents Each community implemented a recruitment strategy that was most appropriate for them. The methods for recruitment included: • Flyers/posters • Radio announcements • Word of mouth • Canadian Prenatal Nutrition Program (CPNP) contacts • Social services/Public Health referrals Many facilitators began by inviting people to register. Most programs eventually opened participation to anyone who wanted to attend. Recruitment was often ongoing throughout the program via radio and word of mouth. Messaging about program content that was distributed by the facilitators in each community varied from community to community: some noted that it was simply a parenting program and did not mention that it was about support as well. Some did not mention the cultural content while others championed this part noting it was about learning traditional Inuit ways. One facilitator noted it was not only about parenting but about better futures. Many mentioned that the teachings were from the Elders. The Spectrum of Parents (low risk to high risk) The target audience for this program was anyone who had children in their care full- or part�time. This program had been described as a cultural revival program as much as a parenting program by some facilitators. This program was developed for parents, guardians, foster parents, and/or extended family. Parents/care-givers who were interested in leadership and learning about Inuit perspectives on childrearing, healthy meals for families, communication strategies, and child development were the key audience. This messaging Qaujigiartiit Health Research Centre 10 11 Inunnguiniq Parenting Program 5-year Evaluation 2014 was not clear in many communities during parent recruitment. There may have been a misconception that high-risk parents were the target audience in some communities. Some facilitators developed their own guidelines for recruitment by only advertising for couples, excluding extended family or single parents, which was not the intention. In addition, a significant number of social workers in the communities requested the opportunity to refer parents to the program as part of meeting Plan of Care requirements for children in protective custody. This was permitted for one of the pilot sites, however Single Parents One community was overwhelmed with phone calls from single mothers wanting to participate in the program. Many participants of the Inunnguiniq program in all communities were single mothers. Fathers/Men The few men who came to the program enjoyed it and often returned. On a number occasions the men who came spoke to their friends/relatives and invited them to the program. Sessions that included men tended to have fuller discussions delving deeper into the core content. One community planned to have a men/fathers only session where they would show the National Collaborating Centre for Aboriginal Health (NCCAH) DVD With Dad ; they had an experienced male facilitator lined up but were unable to follow through. 1 Radio In communities who had active community radio stations, this was an effective way to share information about the program. Radio was also used to recruit childcare workers and Elders and notify the community if a class was cancelled. One community used the Inunnguiniq materials to conduct radio shows on Parenting. They offered prizes and reported this was well-received and increased program participation. General Program Comments Program Planning At the training, facilitator pairs were encouraged to meet either in Iqaluit with the Inunnguiniq Coordinators or upon return to their home communities to begin planning the implementation of their pilots. Facilitators who planned well in advance proved to have lasting programs with better attendance. Most facilitators scheduled a weekly planning time; those who followed through saw greater success. Introducing the Program Each community created their own introduction to the program. An introductory a resource provided to facilitators with their program materials 1 Qaujigiartiit Health Research Centre 11 “We [have a choice and] can start now!” - Inunnguiniq Parent 12 Inunnguiniq Parenting Program 5-year Evaluation 2014 recruitment open house format provided a common first meeting and often involved food, games, and prizes. One community implemented a 2-day introduction to the program over a weekend focusing on the healing component of Module 1. Elders and parents were invited to come and learn about the program and were provided opportunities to share their stories. This weekend was well attended and provided a strong foundation upon which to start the program for that pilot. Most communities expressed the program had a slow start. After the first module was completed, most facilitators described a better cohesiveness and responsiveness among the group. Many parents and facilitators struggled with the concept of ‘Inunnguiniq’, as many had never heard it before. It took most parents a few sessions to begin to understand the meaning of the term and all that it carries. For many, this was a moment of profound realization, particularly for parents who had experienced trauma in childhood. Childcare It was essential that childcare be provided as part of the program and has been included in the program structure. It was recommended to facilitators that childcare be made available in all communities; some communities did not think this was necessary but discovered it helpful. When the children and parents were in the same building, this allowed for parent-child interaction as needed/wanted. A few other community groups brought parents and children together for their snack break together. One community decided to leave the parent and child rooms open to each other. Childcare workers were often difficult to find and reliability was low. Best practice was to have a number of workers on call; this was helpful when a large number of children were present and two workers were needed. Facilitators who called to remind the childcare workers had best results. Childcare workers with child-related education/certification were ideal. One community planned their session during the times that the Aboriginal Head Start program was in operation. This allowed their pre-school age children an opportunity to learn traditional teachings at the same time as the parents. Qaujigiartiit Health Research Centre 12 Child: “mom, how come you are so calm when you come home from parenting?” Mother: “It must be working” - Reported by Inunnguiniq Facilitator “When the parents were quiet, body language spoke to us and told us that the parents were receptive” - Inunnguiniq Facilitator “Go out, eat outside, walk and talk, berry picking and chatting...let the kids play while parents talk in a natural relaxed setting“ - Inunnguiniq Facilitator recommendation “When they were busy working, they were also busy talking“ - Inunnguiniq Facilitator 13 Inunnguiniq Parenting Program 5-year Evaluation 2014 It was recommended by a facilitator that childcare workers submit a criminal record check before attending to children alone. Land Component Most facilitators were keen about this aspect of the program and many started planning and talking with their group about land excursions early on. Participants became engaged during planning; some offered to contribute personal belongings and equipment (sleds, snow machines, camping/fishing gear, etc), as is natural in most communities. At one pilot, the participants included mothers and one father. It was observed that the father especially enjoyed being able to contribute to the land component of the program. He volunteered to guide, made equipment and planned for additional equipment to be available from community members on the day of the land trip. This may be one approach to attract men into the program, and has proven successful with other parenting initiatives in Nunavut . It was noted in one of the NCCAH 2 DVDs that the group was successful in involving fathers by saying they needed things done. When they identified a need for assistance it was easy to bring men into the program under the auspices of helping, but not participating. Once at the program the participants and facilitators would keep them working on projects while they listened in on the discussions at the program. Due to the weather and time constraints only a few groups were successful in leaving their communities to enjoy the land. Many improvised and had a celebration including fun, food and games at their local community hall where all family members and friends were invited to join in. Food Planning for a snack break was delivered differently in each community. It was found that country foods were a favorite but difficult to find in some communities; facilitators often asked how they could get country food from coordinators or other communities. Many families were hungry and appreciated the opportunity to eat at the parenting program and take food home afterwards. Participation Levels During the first sessions, facilitators reported that parents were hesitant to contribute. As familiarity grew among participants and with the program content, so did discussions and parent engagement. Toward the end of the program pilot more parents provided support to one another; and facilitators used words such as ‘teamwork’ and ‘eager to help’ when describing interaction. This reinforced the considerable evidence for the strengths-based group setting for parenting support programs. With time and the establishment of a sense of belonging, facilitators reported that many of the parents in most communities became more open and shared ‘what they really needed to talk about’; they ‘let go of some long ‘Fathers and Sons on the Land’ program developed and run by the Clyde River Ilisaqsivik Centre 2 Qaujigiartiit Health Research Centre 13 “I’m noticing that young people are wise and want to hear from us. They are very welcoming of us and want to learn from us.” - - Guest Elder at Inunnguiniq - Parenting Pilot 14 Inunnguiniq Parenting Program 5-year Evaluation 2014 held hurts’. Table 1: Factors Affecting Participation Levels Factor Comment Self-esteem Facilitators identified that some of the participants appeared to lack confidence or have low self-esteem. When these individuals did share their voices were so soft they were difficult to hear. Quiet times/no response Facilitators reported that they would often ask questions and receive no response or experience periods of quiet. Elders Most communities noted that parents were keen to listen to and ask questions of the Elders. Participants were very interested in hearing and learning about how life was lived in the old ways. Communities who involved Elders had greater success with parent participation. Energizers Many communities reported using games and other energizers. This had the effect of relaxing the group and in turn facilitated discussion. Activity There was a high level of participation reported from all programs during the cooking components. Participation increased with program delivery that included experiential active learning. Qaujigiartiit Health Research Centre 14 15 Inunnguiniq Parenting Program 5-year Evaluation 2014 Facilitator Perspectives Two facilitators from each of the ten identified pilot communities attended the Inunnguiniq Parenting Support Program Training in Iqaluit, November 2011. After the training, eight of the ten communities delivered the pilots. The training for the revised 2nd edition of the program was delivered in Iqaluit in 2013 to 10 facilitators, 5 of whom were from the original pilots. Despite challenges, most facilitators enjoyed delivering the Inunnguiniq Parenting Support Program and many expressed interest in providing this program again. The most common themes are reported below. Additional facilitator and parent requests and comments can be found in the appendices. Group Type & Number Many facilitators wanted to market the program to a particular demographic (open, closed, couples only, single parents, etc.), which was not the intent. However, these facilitators also were uncertain about what kind of group they wanted. Discussions over time revealed that open groups were most effective, where participants came and left the group over the course of the program in a drop-in format. It is worth noting that the most successful group had a very close core group of parents with high attendance, participant retention, and little turnover. Elders Sessions were more engaging when Elders participated and contributed. It was reported that their presence had a relaxing effect on parents and facilitators making classes more enjoyable. Parents were more engaged when Elders were teaching and sharing stories; they had many questions for the Elders and were keen to learn from them. For some communities it was difficult to find and retain Elders. Reasons included: • Elder was sick • Weekends were not good for Elders • Elder became tired – session was too long • The Elder remembered the story differently and this caused concern for facilitators3 • Elder was unsure of their role • Language barriers/Difficulty finding translators Facilitators noted it helped when they contacted the Elders prior to class as a reminder and when the Elder knew they were not expected to stay for the whole class. Qaujigiartiit Health Research Centre 15 “We are learning a lot when we are teaching. We are learning so much from participants.” - Inunnguiniq Facilitator “When Elders speak, it makes everyone feel good.” - Inunnguiniq Facilitator 16 Inunnguiniq Parenting Program 5-year Evaluation 2014 Meeting Elders Elders involved with Inunnguiniq who were/are part of the Elders Advisory Group brought 4 an incredible amount of significance to the program. Each time Moses Koihok, participant in the Elders Advisory Group for many years, attended an Inunnguiniq session and shared stories, participants shed tears (this was interpreted by facilitators as tears of healing and a release of long held hurts). Moses said he was grateful to be asked to come and share his knowledge. Healing Many facilitators identified the need for healing (often both for themselves and for the parent participants) and wanted to offer a healing session but did not know how to approach this. It was recommended by the Dept. of Health and Qaujigiartiit program coordinators they invite local professionals (mental health workers, counselors, wellness/addictions workers, social workers, etc.) as guests to the program to meet parents and make connections. Facilitators noted that some Elders who attended the program may also need support to heal from trauma. Food The food components of the program were well received by facilitators and participants. Some facilitators reported it was the food component of the program that kept parents coming. Snacks, leftovers, and in some communities take home items in the form of a door prize, etc., provided additional food resources in the community that were needed. Country food was sometimes difficult to obtain but always appreciated. Activity around food preparation was reported to provide respite for the more strenuous, internalized parts of the program. Participants talked more openly during periods where they were preparing food as a group. Facilitation and Group Skills A considerable amount of time was spent on building facilitation and group skills during the Inunnguiniq Facilitator Training workshops. The group of facilitators who implemented this series of pilots possessed a range of skills and abilities. Attributes of facilitators who felt successful and those who experienced greater challenges are identified below. The Elders Advisory Group was created by the GN Department of Education to gather information about 4 traditional Inuit life. They have been convening since Nunavut became a Territory (1999). Many of the stories and teachings in the Inunnguiniq program were derived from recordings of the meetings of this group. Qaujigiartiit Health Research Centre 16 “Eating together with family and Elders helps with family communication.” - Inunnguiniq Facilitator “When we teach our children something, like correcting them when they are bad, this melts their heart because we show them we care.” - Inunnguiniq Parent 17 Inunnguiniq Parenting Program 5-year Evaluation 2014 Table 1: Attributes of Facilitators Who Felt Successful Table 2: Attributes of Facilitators who Experienced Challenges Attribute Comment Age Young Elders - people who have been through the parenting process and have adult children. Elder(s) It was requested by an Elder that a male and female Elder team is most effective; an Elder buddy approach is useful as it provides internal peer support to the Elders. Men To create balance it is best if there is at least one man on the facilitation team; when men were involved with the group they were always well received. Group facilitation experience Knowledge of group dynamics and the importance of observing and responding to group needs. Counseling skills and/or experience: Successful groups tended to disclose feelings around serious issues; facilitator teams need to be ready for this and able to offer individual follow up themselves or provide appropriate referrals to community professionals. Self-confidence Ability to handle a group on their own if other facilitators are unable to attend. Teamwork Prior experience working together is an asset; facilitators who know and are comfortable with each other produced the best results. Translation Facilitator teams that include one bilingual person who is comfortable translating as needed. Cooking experience Confidence in reading and following recipes and leading a group in healthy cooking and nutrition related content. Attribute Comment Appointed to act as facilitator Facilitators who were ‘appointed’ to the program (i.e. those who did not volunteer or self-nominate) proved ineffective. Planning Facilitators who did not spend time planning their program sessions in advance, with each other and/or with guest speakers (elders), experienced more challenges. Healing Facilitators who had unresolved grief or traumatic experiences reported having a more difficult time delivering the program. It is important to note, however, that they were referred to counselling support, with whom they could discuss their feelings if they wished. All facilitators who faced this scenario were committed to delivering the program and decided to continue with it. In the end, they reported the program was helpful on their healing journey. They also noted the need for greater healing supports in their communities. Qaujigiartiit Health Research Centre 17 18 Inunnguiniq Parenting Program 5-year Evaluation 2014 Challenges The need for healing Universally the need for healing was highlighted among facilitators and participants. Wanting to be responsive to parents, but not having the resources available (i.e. counsellors or trusted professionals) to refer participants to, contributed to challenges for facilitators. One facilitator recalled a session that naturally turned into a healing session where everyone became emotional and felt compelled to support the participant in need, including the facilitator (see text box next page), however, also noted that this was not the intent of the program and no one in the room was equipped with the skills to support a seriously distraught person in the event that this was needed (it wasn’t). They also noted that they had made connections to professionals in the community to whom the participants could be referred. Communication or Language Barriers Some facilitators reported that they experienced difficulties with resources that were not available in Inuinnaqtun or in a specific regional dialect of Inuktitut. These are common reports among all programs offered in Nunavut, and regional dialect differences are a common discussion point both within our organizations and in Nunavut as a whole. Some facilitators were difficult to contact and slow to respond to messages for follow-up and teleconference calls. Cancelled Classes Most programs experienced a high number of missed classes due to the following reasons: • Illness • Facilitator/medical travel/family illness • Parents with sick children • Community illness (ex. Flu going around and everyone staying in) • Weather • Storm days (at least two in each community) • Weather too cold (no taxi in community) • Death(s) in community • School closed (in-service) • Community events (winter games, trade shows, etc) • No one, or only one person came so they decided not to have class • Facilitator away • Travel commitments (i.e. work or medical) • Having to attend to family concerns (some felt it took too much time away from their family) • Two facilitators left the position to take on other full time jobs (both reported to enjoy this job but needed the extra income and could not commit to both) Qaujigiartiit Health Research Centre 18 19 Inunnguiniq Parenting Program 5-year Evaluation 2014 Timeline Facilitators reported that the amount of material in the program was too large for the time period provided. Some sessions ran longer than the planned two hours and a few facilitators were unhappy with extra time commitment. Resource Bins Due to a number of factors: lack of organization within the bins; short time frame of program; and facilitators with other full-time jobs; the resource bins were reported to be as much of a hinder as a help. Many facilitators did not know where to start, were confused by the many papers, and had difficulty finding the right books. Some reported that resources mentioned in the curriculum were not included in their bin. Technical Difficulties Some pilot programs experienced unavoidable infrastructure or technical difficulties while implementing the pilots. • Internet down • No email address • Low computer literacy for email communication (power point presentations) • Fax machine in another office • DVD & TV unavailable or difficult to access Qaujigiartiit Health Research Centre 19 20 Inunnguiniq Parenting Program 5-year Evaluation 2014 Successful Approaches The implementation of each specific pilot became unique to each community as the facilitators were responsive to the needs and resources available to them. Successful delivery was dependent on facilitator literacy level and teaching style, comfort level in leading groups, community resources, and parent needs. There was a wide spectrum of delivery methods: one community read the curriculum directly from the book and, on the other side of the spectrum, one community chose a module topic such as “Living the Good Life” and then asked an Elder to come and share on this topic. GN and QHRC support coordinators continued to recommend that facilitators follow the curriculum as much as possible while remaining sensitive to parent needs. Soft starts Some groups opened with prayer and took time to do a ‘round table’ check-in about how each was feeling and if anything was bothering them or their children. It was reported that this allowed participants to ‘get things off their chest’ after which they were more clear�minded, not as pre-occupied, and ready for new learning. One group started each session with food and slowly eased into the discussion of program content. Group work - Circle discussions Facilitators noted that participants were more comfortable staying together in a large group. Many chose not to break into smaller groups and discussed things as a whole. This was reported to benefit group unity. Activity-based learning It was noted in almost every group that activities naturally fostered communication and group dialogue. Participants felt more at ease while cooking, interacting with their children, or doing other kinds of activities. Facilitators felt this mirrored ‘traditional’ or familiar modes of learning in Inuit communities, where a knowledgable individual would share knowledge, such as the role one plays in a family, to younger members of the community while simultaneously teaching an activity, such as sewing clothing or repairing equipment. Recognizing and acting on opportunity When wellness professionals arrived from out of town, some facilitators invited them in as guest speakers. In all instances, guests were well received by participants. Partnering with professionals Participants enjoyed visits and information provided by local professionals: CHRs, Social workers, Mental Health and Wellness workers, CPNP workers, Addictions specialists and Counselors, Nutritionists, etc.. The importance of a safe and comfortable space One community group felt awkward in the meeting space they were allotted, so they partnered with the CPNP Program, which facilitators and participants were familiar with. This also helped with attendance. Another community responded to low attendance by partnering with another successful program. The benefits of collaborating with other community programs was noted as helpful not only to provide a safe a comfortable space Qaujigiartiit Health Research Centre 20 21 Inunnguiniq Parenting Program 5-year Evaluation 2014 for participants, but also increased comfort level and made participants feel at ease in a familiar space. Elders Elders who understood the purpose of the program and who were comfortable sharing traditional stories were essential to the program. Parents were significantly more engaged during these sessions and valued the links to traditional practices and ways of knowing. Food The inclusion of food was a critical component for success for a number of reasons including: participants needed the food or the meal (possibly because they had not eaten in some time); when the opportunity arose, they took food home to their families; sharing food is a traditional Inuit custom that is about harvesting, accomplishment, and celebration - sharing food at sessions made participants comfortable and contributed to increased participant retention. Responsive to immediate needs of the parents Facilitators reported that when they were responsive to parent needs and flexible with the program material, the order of the sessions and the mood of the group on any given day, the group was more unified, which resulted in a greater sense of belonging and increased participation. Facilitator sharing & honesty A facilitator for the most successful pilot, while leading a group on her own, shared her own feelings about her difficult week telling participants that ‘[she] almost did not come, but did so because of the people in the class and that [she] knew [she] would feel better after the group’. Parents were very responsive to her honesty and the facilitator reported that they “felt like a little family” as a result. Door Prize / Incentive Many communities provided a door prize or other incentive to recruit and retain participants. Most often this prize was healthy foods/groceries which parents were always grateful for. One community chose to always have a fruit basket door prize; this was very well received and had the added benefit of introducing new fruits to the homes. Recognizing accomplishments of participants The most successful group finished the program with a formal sit down dinner open to all family members. Their Elder said a prayer and read out a thank you note in their language. This note was laminated and presented to each participant as a keepsake. Parents were also presented with certificates of appreciation. Some gave a little speech and spoke from the heart. Each participant received a bag with health promotion items to take home with their thank you notes and certificates. Qaujigiartiit Health Research Centre 21 22 Inunnguiniq Parenting Program 5-year Evaluation 2014 Curriculum Specific Feedback General Comments The depth of the material as presented in this curriculum was noted to be somewhat difficult for parents. One reason that was identified was that many parents had not been exposed to this kind of traditional learning before and they were not sure how to digest and react to it. The parent exit questionnaire responses showed that each module was liked either “quite a bit” or “a lot”. Facilitators who conducted the parent evaluation as a group exercise also noted the following comments: “really liked the modules”, “good advice”, “helps a lot”, “more interested in Elders”, “healthy food”, and “kept me sober”. A number of facilitators used the sessions in the modules loosely and wove their way through the material as they felt best-addressed parent needs. Below are the highlights reported from facilitators for specific activities in the curriculum. Koihok Story This story was received with mixed feelings among different groups. Some found it too emotionally difficult. Facilitators who were uncomfortable delivering the story were facilitating without Elders. Some participants also noted it made them feel uncomfortable (it was recommended they bring in an Elder to explain). Other groups were moved by the story. In one group it was reported to be emotionally touching; this worked to bring a sense of cohesion to the group. Inuit Values cards One group, who were slow to engage with other content, responded very well to the Inuit Values. They began speaking to each other in Inuktitut language and expressed interest in learning how the values related to the pictures. In this group when parents were asked “What does it mean to have a good life?” facilitators noted responses were mostly material; however after the values cards were introduced, the direction of the discussion changed and the parents looked deeper into the relationship between values and a “good life”. Rhoda Karetak’s Fragile Egg and Hard Rock: This was a favorite all around and generated good discussions about attachments that parents could relate to. Many enjoyed the drawing activity and showing where each family was in this continuum. Naming This session has been one of the most popular sessions among parents and facilitators and often initiated in-depth discussions. Many expressed how they had never been taught the naming tradition, and now that they understood it, felt its’ significance and wanted to make it a part of their lives. Parents and facilitators in every program shared their own naming relationships and those of their children. When an Elder shared personal stories about naming, participants were engaged and moved, Elders speaking to this greatly deepened understanding. One of the most interesting observations from this session was that some Qaujigiartiit Health Research Centre 22 23 Inunnguiniq Parenting Program 5-year Evaluation 2014 parents had forgotten about or disregarded their relations through naming, and said the exercise highlighted the web of supportive relationships among people in the community. Ages and Stages Questionnaire This tool was reported useful in communities who tried it, though time did not allow for all communities to do so. One pilot asked parents to bring their children to the program and helped parents work through the short questionnaires with their child(ren). This was fun and reported a great success.5 Inunnguiniq child development pamphlets These were well received in all communities. Parents were engaged and conversing over the text. Parents commented that the pamphlets would be useful as their children grow and develop. Rhoda’s Dream – Story of Burying the Baby Participants related well to this theme. Some communities had deep discussions about their culture dying; parents opened up to share personal difficulties with this. An Inuinnaqtun community noted the DVD was in Inuktitut and found it inaccessible. Parenting Styles This tool was useful for promoting discussion. Parents liked to talk about where they were, and where they wanted to be in this continuum. Eating Together as a Family This poster was used in some communities and generated discussion around eating practices. It proved very useful in one community where it sparked a positive conversation about how this is still a common practice and healthy way for families to spend time together. Discussion followed regarding using mealtimes as opportunities for family communication. Child’s ‘puuq/sack’ Participants found this attachment concept interesting; they could understand and relate well to this idea. Good discussions followed. Inutsiapagutit These concepts were well received, especially when shared by an Elder. Some parents remarked how well they remembered these ideas from their childhood and commented that they were not using them with their children and how they would like to do so. One community linked this into to the CBC Legend radio show recording of “The Two Sisters and the Orphan Shaman”; this was very successful in generating in-depth discussion about the importance of teaching children. Kiviuq Story 5 Parent-child interaction during or after parenting sessions was noted as a valuable practice in parenting program research. Qaujigiartiit Health Research Centre (2010). Parenting Support Programs in Nunavut: A Review. Iqaluit, NU: Qaujigiartiit Health Research Centre p. 24. Qaujigiartiit Health Research Centre 23 24 Inunnguiniq Parenting Program 5-year Evaluation 2014 Some of the younger parents had not heard of this story before and enjoyed it. In one community a facilitator re-wrote it in their own dialect and participants recognized and enjoyed hearing the story again. Another community read out the story; parents were interested and a good discussion followed. In a community without Elder support, this story was not well received. Maslow’s Hierarchy of Needs Many had no previous exposure to this idea and were interested. Household Responsibilities Chart This activity was welcomed and enjoyed in all communities who presented it. It was evident that most homes do not share responsibilities equally and that most of the house work was carried by the mothers. Parents shared their desire to think about how they would be able to include other family members in sharing household responsibilities. Budget Planning Most facilitators and parents reported that they had never developed a budget before. This activity was appreciated by both facilitators and parents, and found useful. One group noted liking the part about identifying wants versus needs; they had not thought of this concept before. The example given was, “While a teen child might want a cell phone, is it something they absolutely need, like electricity or food.” Role-playing One community created a little book for each participant that the participants chose to call a “Plan of Care Agreement”. In this book were the Inunnguiniq principles, the household responsibilities worksheet, and the budgeting worksheet. This group understood the concept of sharing responsibilities, and liked the idea, but was uncertain of how to go about making this happen. The facilitator and guest instructor jumped into a role-play: One said, “I’m the Qaujigiartiit Health Research Centre 24 One instance where a woman was experiencing a particularly difficult time in her life, the group asked to just have a sharing session to support this one person (this was a close-knit group). The facilitator (who was on her own that week) knew of a visiting counsellor who was well-known and received by the community. She called to see if he was available to come and help. He was not available at that time but asked if he could see the woman in need later in the day. When the facilitator offered a gentle reminder to return to the planned program, one participant said, “We are talking about parenting: healing, residential school...it’s all parenting.” The parents were clear that they felt that this discussion was what parenting was all about, “living life and getting through hard times”. They continued to share and support the woman and finally all hugged her. It was reported that the discussion involved overcoming grief associated with suicide, residential school abuse, sexual abuse, arranged marriage, and children born to women who experienced sexual assault. The parents left the session reporting feeling much ‘better and lighter’ than when they arrived. By creating a safe and supportive space and being responsive to group needs, parents were able to begin a healing process within themselves that they associated with being a better mother/father. - Reported from successful pilot 25 Inunnguiniq Parenting Program 5-year Evaluation 2014 mom and I’m good at cooking and cleaning so these will be my jobs”. The guest said “I’m the dad and I’m good at hunting and fishing so I will supply our meat” (this started the group laughing). The ‘parents’ labeled the participants as their ‘children’ and modeled by going around the circle asking each ‘child’ what they were good at (strengths), or what they liked doing. Each participant ‘child’ replied “I’m good at…” and then the pretend parents replied, “then your job will be to …”. The participants thoroughly enjoyed this activity. It brought them understanding of how they could do this in a fun way with their family, how it would identify and bring out individual strengths, and how it would help in the home by sharing responsibilities. The role-play made it fun and easy to understand. The parents were pleased with this and looked forward to working with their families on their ‘Plan of Care Agreements’ standing by the Inunnguiniq principles.6 Storyboard / Book-making At this point in the program, facilitators were aware of literacy levels; many who reached this part of the curriculum incorporated creative methods included acting stories without words (mime), modeling how to tell stories without books, and telling stories from books using only the pictures. One community had well-known story-teller Donald Uluadluaq come in and talk about his storytelling experiences. He discussed how his storytelling skills originated from hours of lying in the iglu at night listening to his parents tell stories. Participants were mesmerized. Donald’s storytelling creativity came from the oral tradition; he spoke about strengthening language and how sharing personal stories built relationships and connections with children and improved family communication. This motivated parents to share their own stories and life experience. This energy was transformed into storybooks that were shared with the group and brought home for families. The typical ‘story builders’ that looked for the elements of plot, setting, character, etc. were not used; instead, Donald and the oral tradition inspired participants. Focused Discussion: Four Family Communication Scenarios The scenarios were well-liked and created discussion; suggested delivery format was adapted. How Does Language Develop In a small group who had challenges getting discussions going, the facilitators role-played the different ways communication can be received and expressed. It was reported the group ‘had a lot of fun’ with this. Healthy Family Nutrition In general, the Nutrition sessions were very well received by both parents and facilitators. A number of facilitators noted that parents loved to cook together; it was as a convenient Role-plays have been identified as a successful tool in parenting programs. Qaujigiartiit Health Research 6 Centre (2010). Parenting Support Programs in Nunavut: A Review. Iqaluit, NU: Qaujigiartiit Health Research Centre p. 25,28. Qaujigiartiit Health Research Centre 25 “I’m telling him after the classes and he’s doing better now as a father, spouse.” - Inunnguiniq Parent 26 Inunnguiniq Parenting Program 5-year Evaluation 2014 break from the content that some participants felt was more emotionally taxing; and that it was relaxing. Parents were talkative and shared stories more easily when there hands were busy with food preparation. One pilot decided to group their regular parenting class with their regular weekly community cooking class (participants were identical for both groups except that the parenting group was beginning to decline in numbers). The result was that parents became more comfortable talking about the material. Nunavut Food Guide Most communities shared this and participants were reported to be interested in learning about what was offered in the guide. The portion sizes were found interesting and helpful. What I ate yesterday This was a fun activity enjoyed by participants who tried it. Kitchen Hygiene One community, experienced at running cooking classes, added in an additional hygiene component that included hand, and fruit and vegetable washing. Other Comments One pilot used their own ideas and were successful in combining learning with fun activities while teaching about healthy foods and budgeting. They asked parents to do a meal plan and budget for 7 days. The parents enjoyed this challenge and it proved a good learning experience. The group was also challenged to create a list of what they would buy with $100, then given the actual prices. They brainstormed how to cook different meals with the grocery list provided in the curriculum. When they made a game of learning, parents enjoyed it and appreciated the healthy food prizes . 7 During a guest presentation it was noted there wasn’t a section about leftovers and not wasting food so ‘they decided to look through the fridge and cupboards and make something with what they found’. The group was very happy and excited to be doing something different ‘not following a book’. They took out all the leftovers and had a good conversation about them. Cooking without a recipe was a ‘big hit’ for this group. For Nutrition Evaluation results see Appendices. 7 Qaujigiartiit Health Research Centre 26 27 Inunnguiniq Parenting Program 5-year Evaluation 2014 Future Directions Based on the data collected for these evaluations, the following recommendations are put forward for the next phase of pilots: • The Inunnguiniq facilitator training session has been revised into 2 streams: a) a 10-day 25 hour course for Early Childhood Education students at Nunavut Arctic College and b) A 5-day intensive 35 hour version that is delivered to community organizations • Continue to raise awareness about the healing component with the Government of Nunavut and other service providers. Qaujigiartiit will continue to offer collaborative support for the development and implementation of a plan for addressing this community-identified need. • Seek core, sustainable funding for program delivery and on-going evaluation of the program in the long term. Qaujigiartiit Health Research Centre 27 28 Inunnguiniq Parenting Program 5-year Evaluation 2014 Appendix A - Parent Evaluation Questionnaire Results Three things I liked most about the program are: 1. Being around groups (people helping each other, sharing) 17 2. Elders & stories of times past 14 3. Learning / Parenting 11 4. Food related – cooking, learning healthy snacks, country food 11 5. Activities 4 6. Bringing children was allowed 2 You could improve the program by: 1. Recording the Elder stories/voices 2. More teaching by Elders 3. Teaching traditional activities like animal skinning and sewing 4. Playing more games 5. Having more healing 6. Adding more time to the schedule 7. Giving gifts to people who attend the program 8. Doing it in the warmer time of the year, during the day, during the evening, everyday, during the day in the summer Some tools that helped me were: Tool Not at all Somewhat Quite a bit A lot Inunnguiniq pamphlets 1 8 13 ASQ assessment 5 4 8 The PATH 1 1 8 7 Budget Planning 4 10 9 Responsibility Sharing 3 6 15 Good Habit Building 2 7 16 Recipe ideas 1 8 15 Storytelling ideas 1 6 17 Storybook/Writing ideas 1 4 6 10 Group discussions 5 5 14 IQ Handbook 2 2 5 11 Self-assessments 1 1 5 8 Qaujigiartiit Health Research Centre 28 29 Inunnguiniq Parenting Program 5-year Evaluation 2014 If this program offered a second phase I would attend: Yes No Each person who answered this question circled Yes. I would recommend this program to others: Yes No Each person who answered this question circled Yes. If a friend asked what this program was about I would tell them: In order of response frequency: 1. Learning from Elders / Learning traditional parenting 2. Getting together with other people 3. Eating and cooking healthy foods 4. Building self-esteem and encouragement After taking this program my children are: • Spending time listening to the stories I tell them from Elders • Really believing their namesakes and knowing that they have to help Elders when they need help • My number one priority • Touched, I don’t call him by his given name as much as I used to, he noticed [that I call him by his namesake or relation name] and he likes it. Thank you very much; • Closer and loving, caring, changing, behaving better, helping me, understanding about parenting • Healthier, happier, listening more, still teaching them • Eating healthy food I cook for them and healthy snacks • I started teaching my child to sew, make bannock, cut fish Qaujigiartiit Health Research Centre 29 30 Inunnguiniq Parenting Program 5-year Evaluation 2014 Appendix B - Nutrition Evaluation Results Few of the pre- and post- nutrition module evaluations were returned; the ones received revealed that some of the questions were not understood. Pre Nutrition Module Questionnaire 1. Most parents reported that they knew what foods were healthy. 2. Barriers to obtaining healthy food included: 1. no means of transportation for harvesting country foods 2. single mothers had more difficulties in obtaining country foods 3. lack of money 3. Most participants reported ‘yes’ that children had skipped meals due to lack of money. Post Nutrition Module Questionnaire 1. Healthy foods recorded included: 1. Fruit & Vegetables 2. yogurt (tubes), milk, cheese 3. granola bars, crackers, bannock, cereal 4. ham 5. macaroni salad 6. country food 2. Ways to help children make healthy choices included: 1. child size plate 2. hand sizes 3. frozen fruit slushies 4. putting out healthy snacks 5. buying healthy foods 6. eating country foods 7. cooking healthy foods for young children 3. Regarding the ability to afford healthy foods for the family, there were close to the same ‘yes’ and ‘no’ responses. 4. Changes to help the family eat more nutritiously included: 1. make a list 2. cook from scratch/make own meals and snacks 3. stop eating at the Quickstop 4. eat more country foods. Qaujigiartiit Health Research Centre 30 31 Inunnguiniq Parenting Program 5-year Evaluation 2014 Appendix C - Requests & Comments from Facilitators & Parents Facilitator & Parent Requests Most communities requested: • More DVDs/audios of Elders - parents thoroughly enjoyed seeing and hearing Elders in video. The Elder present could listen to the story and then comment and/or share a similar story. The CBC legends CD was recommended • More games, fun, and hands on activities, sewing while at class • A way to acknowledge dedicated parents, the ones who came regularly and showed noticeable efforts in implementing program material; ideas for this were certificates and food baskets • More hands-on activities, sew while at class • Help/ideas about recruitment and retention Some communities requested: • To connect with other program facilitators to learn from each other • Prizes for games Responses from parents: “What more do you want to learn”: • How to manage children • How to teach our children • What is right/healthy for my children • Communicating • Relationship building • How to stop spoiling kids • Single parenting • How to deal with stress • First aid and CPR training Facilitator Comments • “When the Elders speak it makes everyone feel good” (multiple comments like this one) • “I learned a lot about Inuit culture. It is a very Inuit program” (multiple comments like this one) • “They can find what they are looking for in a story” • “One community reported that they were thinking about using social media (Facebook) to remind people about the program. Parents on Facebook were Qaujigiartiit Health Research Centre 31 32 Inunnguiniq Parenting Program 5-year Evaluation 2014 mentioning they missed parenting class when there were 3 cancellations (weather-related). We feel like a little family … With this group there’s a lot of healing and it would be good to see other parents out there go through what this group is going through [in a positive way].” • It’s not always easy for them to connect the material to their lives, responses are sometimes superficial • One day a group experienced participants who were not happy with each other. A facilitator shared a personal experience and then the ladies cried and apologized to each other. After they laughed visualizing the ladies chasing each other down the street with their walkers if they were still fighting many years from now. Parent Comments • I’m really learning about me right now • It’s important to talk with someone I trust • Parents were saying their children were learning from them • Parents reported that after a session they would go home and their children would praise them • One parent who was going through a particularly difficult time said she almost didn’t attend a few sessions but said to herself ‘I know I’ll feel better if I come’, and so attended the program and reported feeling better after attending. • They loved the program and said they would attend every day… ‘Too bad it’s going to end, we go away from here feeling so good’. • ‘She is really standing up for herself now and her culture’. - Facilitator • ‘Participants were saying that it was difficult at first to make clothing – you learned how to make beautiful things if you keep on trying … They started remembering what their Elders told them, they started to remember things about parenting that they were told when young.’ • I’ve learned that alcohol isn’t healthy and creates more anger. • Never give up on your kids. • It’s good to teach children to do things for themselves • When we forgive others we heal ourselves • Tell the truth. • Tell [children] not to do bad things • My parenting style is better now that I am attending this class • Multiple comments about how they want to learn how to be good parents • If we keep doing our traditional activities and talking in our dialect then we won’t forget our traditional ways, so our children will know who we are. Out on the tundra long ago they survived, it was great out there, they learned a lot from their parents Qaujigiartiit Health Research Centre 32child-and-youth
Inunnguiniq Info Sheet

This document talks about research into Nunavummiut needs for parenting support programs and what parents needed …

EnglishᐃᓄᒃᑎᑐᑦInunnguiniq Parenting Program: Information Sheet – 1 Inunnguiniq Info Sheet The Story of the Inunnguiniq Program Many Nunavummiut have talked about the need for parenting support programs in our communities. In response to that need, the Qaujigiartiit Health Research Centre (QHRC) began to research and develop the Inunnguiniq Parenting Program in 2009, with the Nunavut Territorial Parenting Advisory Committee and other partners. We wanted to create a culturally relevant parenting support and intervention program that addressed the needs and interests expressed by parents in our communities. We recognized that this program needed to be made in Nunavut, by Nunavummiut, for Nunavummiut. Development of the Program We started our research by reviewing existing support programs in Nunavut. We also looked at other circumpolar regions to learn from them. We did a literature review (a scan of all other research that people have done on this topic). We also asked many Nunavummiut, including parents, program facilitators, and other community members about what should be in the parenting support program. We based the Inunnguiniq Parenting Program on our research. We included all the best practices we learned about in our research, including working from a strengths-based, empowerment perspective. And, we included the content that people said would be most useful to parents in Nunavut at this time: • Healthy eating and nutrition • Roles of parents in raising and guiding children • Roles of extended family in child�rearing • Inuit perspectives on child�rearing • Practical life skills grounded in Inuit Qaujimajatuqangit • Interpersonal communication skills (for partners and children) Inunnguiniq Parenting Program: Information Sheet – 2 • Importance of the land • Wellness counseling and healing from trauma • Stages of child development • Positive discipline methods • Exploration of ourselves and our actions through reflection Some might think that Inuit never planned for the future. They may think that we lived one day at a time without a plan. We are here today because our ancestors made sure that we could survive. They did not live one day at a time. They made us into human beings right from birth. ~ Mark Kalluak Strong societies focus on the future and on continual improvement. The focus of Inuit social teachings and child-rearing practices was always the future. The development of good human beings was central to this. Everyone was expected to become a capable and contributing human being. A core goal in the lives of all Inuit was to continually develop skills and expertise, so that they could provide for others. To be able to improve something and make life easier for others was considered a high achievement. ~ Adapted from the Inuit Qaujimajatuqangit Education Framework for Nunavut Curriculum Our 3 Goals The first goal of the Inunnguiniq Parenting Program is to revitalize the wisdom and practices of inunnguiniq in our lives today. The second goal is to support healing for participants and their families. The third goal is to increase the practice of inunnguiniq in our communities, strengthening the roles of extended family and community in child-rearing. Let’s look at each of these goals in a bit more detail. Inunnguiniq Parenting Program: Information Sheet – 3 1. To revitalize inunnguiniq for our lives today The first goal of the Inunnguiniq Parenting Program is to reconnect parents with inunnguiniq. But, we don’t want to simply bring back old ways. We want to support parents to adopt these practices and teachings in ways that will help them build strong human beings today. 2. To support healing The second goal of the Inunnguiniq Parenting Program is to support healing. Healing is necessary for many people because of the effects of colonization. Colonization disrupted Inuit culture. Many changes occurred. People were moved into settlements and the government took control of their lives. These changes left most Inuit cultural and social systems weakened. It had an enormous impact on our parenting traditions. Many people experienced trauma. But, people don’t often speak of this time. Many adults today do not understand the trauma that affected their parents and elders. We hope that this program will support participants to heal from this trauma. The program includes time for conversations. It suggests healing activities. This work will help parents understand how inunnguiniq was disrupted. It will also help participants revalue the strengths of traditional parenting practices. It will also help parents bring those strengths into their lives today. 3. To rebuild the role of extended family and community in child-rearing Inuit expected children to grow up to “live a good life.” Shared caring was a way to achieve this. Shared caring simply meant that a child’s extended family and others helped raise the child. Many people shared responsibility for teaching, training, caring, To revitalize inunnguiniq for our lives today. To support healing. To rebuild the role of extended family and community in child-rearing. Inunnguiniq Parenting Program: Information Sheet – 4 nurturing and cherishing. Everyone in the child’s life reinforced cultural teachings, values and beliefs. Everyone passed on the stories, sayings and songs that would guide the child. We have the same love and hopes for our children today. But many parents feel isolated. They may not have the same support from their extended family or community. So, they may struggle to meet the demands of parenting. We hope that the Inunnguiniq Parenting Program will help parents make new connections and strengthen old ones. Participants will connect with each other. They will also connect with Elders and other resource people. These people can help participants bring more shared caring into their parenting today. We also hope that participants will increase their skills and knowledge in a few key areas. By the end of this program, we hope that participants are able to: • Understand inunnguiniq; • Bring cultural beliefs and practices into their parenting; • Understand the stages of healthy child development; • Connect with others in positive and supportive relationships; and, • Continue to observe, refine and build their parenting skills. These outcomes apply to the whole program. We have also identified specific learning outcomes for each module in the curriculum. They are listed on the first page of each module in the Curriculum Guide. Inunnguiniq Parenting Program: Information Sheet – 5 Learning Outcomes Understand inunnguiniq Bring cultural beliefs and practices into their parenting Understand the stages of healthy child development Connect with others in positive and supportive relationships Continue to observe, refine and build their parenting skills Inunnguiniq Parenting Program: Information Sheet – 6 Core Content Inuit Qaujimajatuqangit The following key concepts from Inuit Qaujimajatuqangit are the foundation of this program: • Maligait (beliefs or “foundational laws”) • Core Values of Inuit Qaujimajatuqangit • Inunnguiniq (“Making of a human being”) • Inutsiaqpagutit (“Words to live by”) and the Concept of “Living a Good Life” The Program Curriculum This program has an open and ongoing structure. We have written a Curriculum Guide with six modules. But there really is no official entry or exit point for participants. Participants can join whenever they are able. They should also feel free to not attend every session. We would like to see the course offered on a continuous basis. We have designed the course in this flexible way to reflect IQ beliefs about learning. The structure is based on inunnguiniq. The Inunnguiniq Learning Model In the inunnguiniq learning model, Inuit see everyone in a community as interconnected. In fact, Inuit Elders say we are all both learners and teachers. They say we learn from everyone and everything we interact with. Traditionally, even young children are both learners and teachers. This is because Inuit believe children carry the souls and personalities of their namesakes. So Inuit believe children also carry on their namesakes’ knowledge. The idea of continuous learning is also stressed in inunnguiniq. Inuit Elders have outlined five stages of learning. (We introduced you to these in the Section 1 above). People may all be at different stages of learning. But Inuit believe this is a positive situation. It means there are those who can benefit from our experiences. At the same time, it means there are others with experiences that can help us. The role of observation is also an important part of the inunnguiniq learning model. As we mentioned in the section above, Inuit believe practice is essential for the development of proficiency. The biggest lessons we learned were from what we observed. …Then finally I was on my own to do many things. Of course I made many mistakes because I had not learned everything yet. I discovered that I had many more Inunnguiniq Parenting Program: Information Sheet – 7 things to learn and practice. I learned from my own life that I was responsible to teach [others] skills, not by scolding but practicing in order to acquire skills. I had to use myself as an example and suggest ways to teach other skills. Arsene Ivalu, CSS August 24th, 2005 Our Program’s Structure All these traditional beliefs are reflected in this course. The program has an open structure. It could even have a drop-in approach. This would let parents join at any time and engage at any level. They then could take time away from the course and practice what they learned. Parents can then return several months later to join a different module. Other participants may continue directly from one module to another. Participants are able to move forward at their own pace. They can also participate at whatever stage they are at. Curriculum Themes The Curriculum Guide contains 6 different themes. Each of these themes can help parents raise a healthy and capable child. Living a Good Life Relationship Building Teaching to the Heart Pilimmaksarniq (Skills Development) Communication Nutrition Inunnguiniq Parenting Program: Information Sheet – 8 The basic structure of the Inunnguiniq Parenting Support Program is as follows: • Facilitator pairs offer the program together in English, Inuktitut and/or Inuinnaqtun as they desire. • The format is a strengths-based group discussion design. Each session begins with a central theme that is explored through a range of activities and dialogue over the course of 2-3 hours. • The target audience is parents/care-givers/foster parents/extended family. Anyone who cares for children full- or part-time. This is NOT a program for ‘high-risk’ parents, but ALL individuals who care for children. Group size should be approximately 8-10, 2 facilitators and a minimum of 1 elder. • Inunnguiniq is not a counseling program. • The program consists of 6 modules taught over 18 sessions (offered 1-3 times/week depending on facilitator comfort/availability) • Each session is to include an elder if possible. In some cases, dvds of elders speaking or telling stories were incorporated into sessions where elders were not available or were not comfortable speaking on a topic. • Each program is to incorporate land components in a minimum of 1 session, but can expand to more. • The parenting program must provide childcare at each session to support parents who wish to attend. • Each session must incorporate a food component (a snack break). The snack must be nutritious and should be country food when availability allows. Recipe ideas are included in the curriculum. Each pilot program received 2 copies of these documents in English and Inuktitut at the training: • Inunnguiniq Parenting Program Curriculum (Modules 1-5 and a separate volume for Module 6) • Inunnguiniq Parenting Program Handbook (additional material for parents and facilitators which included additional stories from elders; additional activities; and an appendix of recipes from community cooking programs in Nunavut • Inunnguiniq Parenting Program Facilitator’s Manual • Inunnguiniq Evaluation Booklet (for recording notes and observations about what is and is not working) Each pilot program received a bin of resources, such as food guides, dvds, cd, posters, pamphlets, and more to complement the activities in the curriculum.child-and-youth
Parenting Support Program for Nunavummiut

This document talks about pilots of the Inunnguiniq Parenting Support Program between January and April …

EnglishᐃᓄᒃᑎᑐᑦInunnguiniq Parenting Support Program for Nunavummiut EVALUATION September 2012 2 This Report was prepared by: Myste Anderson Inunnguiniq Parenting Support Program Coordinator Qaujigiartiit Health Research Centre Kugluktuk, NU Gwen K. Healey Executive and Scientific Director Qaujigiartiit Health Research Centre Iqaluit, NU This report can be referenced in the following way: “Qaujigiartiit Health Research Centre (2012). Inunnguiniq Parenting Support Program Evaluation Report. Qaujigiartiit Health Research Centre, Iqaluit, NU.” Inunnguiniq Parenting Support Program Evaluation 2012 page 2 of 36 Qaujigiartiit Health Research Centre 3 Table of Contents Summary of Findings .........................................................................................................................5 History ........................................................................................................................................................6 Inunnguiniq .................................................................................................................................................7 Evaluation Approach .........................................................................................................................8 Weekly Phone Calls ....................................................................................................................................8 Evaluation Materials Booklets ....................................................................................................................8 Parent Exit Questionnaires .........................................................................................................................8 Measuring Success ......................................................................................................................................8 Recruiting Parents ..............................................................................................................................9 The Spectrum of Parents (low risk to high risk) .........................................................................................9 Single Parents .............................................................................................................................................9 Fathers/Men ................................................................................................................................................9 Radio .........................................................................................................................................................10 General Program Comments ............................................................................................................10 Program Planning ....................................................................................................................................10 Introducing the Program ..........................................................................................................................10 Childcare ...................................................................................................................................10 Land Component .......................................................................................................................................11 Elders ........................................................................................................................................................12 Food ..........................................................................................................................................................12 Participation Levels ..................................................................................................................................12 Facilitator Perspectives ....................................................................................................................14 Group Type & Number ..............................................................................................................................14 Elders ........................................................................................................................................................14 Healing ......................................................................................................................................................15 Food ..........................................................................................................................................................15 Reading and Writing .................................................................................................................................16 Facilitation and Group Skills ....................................................................................................................16 Challenges ........................................................................................................................................17 Low Literacy: Too Much Writing/Reading/Text-based Resources ............................................................17 The need for healing .................................................................................................................................17 Communication or Language Barriers .....................................................................................................18 Cancelled Classes .....................................................................................................................................18 Timeline .....................................................................................................................................................18 Resource Bins ............................................................................................................................................19 Technical Difficulties ................................................................................................................................19 Successful Approaches .....................................................................................................................19 Soft starts ..................................................................................................................................................19 Group work - Circle discussions ...............................................................................................................19 Working while talking – Active hands .......................................................................................................20 Recognizing and acting on opportunity ....................................................................................................20 Partnering with professionals ...................................................................................................................20 The importance of a safe and comfortable space .....................................................................................20 Elders ........................................................................................................................................................20 Food ..........................................................................................................................................................20 Responsive to needs of the parents ...........................................................................................................21 Facilitator sharing & honesty ...................................................................................................................21 Inunnguiniq Parenting Support Program Evaluation 2012 page 3 of 36 Qaujigiartiit Health Research Centre 4 Door Prize / Incentive ...............................................................................................................................21 Recognizing accomplishments of participants ..........................................................................................21 Curriculum Specific Feedback .........................................................................................................22 General Comments ...................................................................................................................................22 Module 1: Living a Good Life ...................................................................................................................22 Module 2: Relationship Building ..............................................................................................................23 Module 3: Teaching to the Heart ..............................................................................................................25 Module 4: Pilimmaksarniq .......................................................................................................................25 Module 5: Communication .......................................................................................................................26 Module 6: Healthy Family Nutrition ........................................................................................................27 Resources ..................................................................................................................................................29 Recommendations for next phase of pilots ......................................................................................30 Conclusion .......................................................................................................................................30 Appendix A - Parent Evaluation Questionnaire Results ..................................................................31 Appendix B - Nutrition Evaluation Results .....................................................................................33 Appendix C - Requests & Comments from Facilitators & Parents .................................................34 Facilitator & Parent Requests ..................................................................................................................34 Facilitator Comments ...............................................................................................................................35 Parent Comments ......................................................................................................................................35 Inunnguiniq Parenting Support Program Evaluation 2012 page 4 of 36 Qaujigiartiit Health Research Centre 5 Summary of Findings Eight communities completed pilots of the Inunnguiniq Parenting Support Program between January and April 2012. Areas of Success: • Overall, parents reported that they enjoyed the program, particularly learning about traditional Inuit perspectives on childrearing and healthy parenting. • Inunnguiniq pilots that regularly involved Elders the sharing Inuit parenting practices and traditional lifestyle had the greatest success. • Parents and facilitators found the session on healing had the strongest response, often continuing into 1-2 more sessions. • Strengths-based, group format was very successful. Facilitators reported that listening and sharing stories with others made them feel better about themselves and supported. They reported transferring this into their family life. • Observations highlighted that participants were most comfortable with and resonsive to material when they were active and working on something with their hands. • When men participated, it was observed that they participated more readily when activities were on the land. • The food and nutritional components of the program were very well received. Areas for program improvement in next phase: • The amount of material in the curriculum made it difficult for community facilitators to work with. • The reading and comprehension material of the curriculum materials is too advanced. • Reading and writing activities in the curriculum had little response • Some of the curriculum elements that were developed to provide structure to the session were too complex and confusing for many facilitators Recommendations for next phase of pilots: • The curriculum will be revised into 2 streams: a) a course to be developed for the Nunavut Arctic College and b) a stream-lined version that will be used for community parenting program facilitators • Revise the reading level of the materials for the parenting program • Remove some of the more complex curriculum structure and add-in more activity�based discussion • Re-visit the healing component with Parenting Working Group to develop a plan for addressing this need. Inunnguiniq Parenting Support Program Evaluation 2012 page 5 of 36 Qaujigiartiit Health Research Centre 6 Introduction History Qaujigiartiit is an independent, non-profit community research centre governed by a volunteer board of directors. Qaujigiartiit Health Research Centre enables health research to be conducted locally, by Nunavummiut, and with communities in a supportive, safe, and culturally sensitive and ethical environment, as well as promote the inclusion of both Inuit Qaujimajatugangit and western sciences in improving the health of Nunavummiut. Mental health and wellness is the number one priority of the research centre. In 2010, Qaujigiartiit Health Research Centre was granted 5 years of funding for a programme of research entitles Child and Youth Mental Health and Wellness Intervention, Research and Community Advocacy in Nunavut. The purpose of this project is to research, develop, implement and evaluate child and youth mental health and wellness initiatives in Nunavut that focus on Northern and community-based ways of understanding and knowing about healthy children and youth. Funding for this programme of research is provided by the Public Health Agency of Canada. The development of an evidence-based parenting support program is one component of the Child and Youth Mental Health Intervention, Research and Community Advocacy Project in Nunavut. The driving force behind this parenting programs research component has been to respond to the need identified by communities for a culturally relevant model for supporting Nunavut parents. Qaujigiartiit is working with many partners to fulfill this need, including the Nunavut Dept. of Health and Social Services, Nunavut Tunngavik Inc., Health Canada, community wellness centres, and community organizations. The Inunnguiniq Parenting Support Program is the result of 2.5 years of research and consultation with many organizations and communities. QHRC plans to pilot, evaluate, and modify this evidence-based, culturally relevant parenting program over 4 years prior to releasing it for use in Nunavut. This report outlines the evaluation data from the first pilots conducted in Winter 2012 in collaboration with the Government of Nunavut’s Department of Health and Social Services (GN DHSS). DHSS provided support and oversight for the development of the Nutrition Module as well as funding and program support for eight additional community pilot sites (Cambridge Bay, Cape Dorset, Clyde River, Coral Harbor, Gjoa Haven, Igloolik, , Kimmirut, and Rankin Inlet). Two of these communities were unsuccessful in implementing a pilot of the program (Igloolik and Kimmiruit). QHRC provided funding and support for two communities, Iqaluit and Arviat. QHRC provided program support to Iqaluit and Arviat, as well as for the two Kitikmeot communities, and conducted the data collection and evaluation for all communities. The results of the data collection are presented here. Inunnguiniq Parenting Support Program Evaluation 2012 page 6 of 36 Qaujigiartiit Health Research Centre 7 Inunnguiniq The basic structure of the Inunnguiniq Parenting Support Program is as follows: • Facilitator pairs offer the program together in English, Inuktitut and/or Inuinnaqtun as they desire. • The format is a strengths-based group discussion design. Each session begins with a central theme that is explored through a range of activities and dialogue over the course of 2-3 hours. • The target audience is parents/care-givers/foster parents/extended family. Anyone who cares for children full- or part-time. This is NOT a program for ‘high-risk’ parents, but ALL individuals who care for children. Group size should be approximately 8 people. • Inunnguiniq is not a counseling program. • The program consists of 6 modules taught over 18 sessions (offered 1-3 times/week depending on facilitator comfort/availability) • Each session is to include an elder if possible. In some cases, dvds of elders speaking or telling stories were incorporated into sessions where elders were not available or were not comfortable speaking on a topic. • Each program is to incorporate land components in a minimum of 1 session, but can expand to more. • The parenting program must provide childcare at each session to support parents who wish to attend. • Each session must incorporate a food component (a snack break). The snack must be nutritious and should be country food when availability allows. Recipe ideas are included in the curriculum. The resources provided to each program included: • Each pilot program received 2 copies of these documents in English and Inuktitut at the training: • Inunnguiniq Parenting Support Program Curriculum (Modules 1-5 and a separate volume for Module 6) • Inunnguiniq Parenting Support Program Handbook (additional material for parents and facilitators which included additional stories from elders; additional activities; and an appendix of recipes from community cooking programs in Nunavut • Inunnguiniq Evaluation Booklet • Each pilot program received a bin of resources, such as food guides, dvds, cd, posters, pamphlets, and more to complement the activities in the curriculum. Inunnguiniq Parenting Support Program Evaluation 2012 page 7 of 36 Qaujigiartiit Health Research Centre 8 Evaluation Approach Information was gathered from each of the communities via the following: 1. Weekly telephone calls from support coordinators to facilitators. Calls lasted approximately half an hour each; notes were recorded on a computer by the project coordinator. 2. An Evaluation Materials book was given to each facilitator at the training. This included written evaluation questions for facilitators to complete after each session (questions were the same for each session); a pre and post Nutrition Module questionnaire for facilitators to ask parents; and a parent exit questionnaire to be completed by parents. 3. Teleconference: During the last week of February all facilitators were invited to join support coordinators for a conference call. Eight facilitators and two program leads called in. Seven communities were represented. Agenda included a sharing of program successes and ideas for overcoming challenges. Support coordinators listened allowing facilitators to provide peer support. Weekly Phone Calls This was the primary mode of data collection and generated the most data. Facilitators shared perspectives, successes and challenges during the phone calls than was expressed in the written documents that were collected. Evaluation Materials Booklets Booklets were submitted from seven of the eight communities. Many facilitators did not answer the questions as asked; they used the pages to record their thoughts and what they did in the session. It became evident that evaluation paperwork was a difficulty for many facilitators. Phone calls proved a more effective method of information collection. Parent Exit Questionnaires The parent exit questionnaire could be administered one-on-one by the facilitator or a parent could fill it out individually. Low literacy and writing skills were reported by some facilitators so they gathered the exit data either in interviews, by conversation, or by observation (See Appendix A for results). Measuring Success The idea of success in this evaluation is based on the following: • Number of participants / repeat participants • Involvement of Elders • Level of facilitator engagement and enthusiasm with program • Level of participant responses/interaction with others and material Inunnguiniq Parenting Support Program Evaluation 2012 page 8 of 36 Qaujigiartiit Health Research Centre 9 Recruiting Parents Each community implemented a recruitment strategy that was most appropriate for them. The methods for recruitment included: • Flyers/posters • Radio announcements • Word of mouth • Canadian Prenatal Nutrition Program (CPNP) contacts • Social services/Public Health referrals Many facilitators began by inviting people to register. Most programs eventually opened participation to anyone who wanted to attend. Recruitment was often ongoing throughout the program via radio and word of mouth. Messaging about program content that was distributed by the facilitators in each community varied from community to community: some noted that it was simply a parenting program and did not mention that it was about support as well. Some did not mention the cultural content while others championed this part noting it was about learning traditional Inuit ways. One facilitator noted it was not only about parenting but about better futures. Many mentioned that the teachings were from the Elders. The Spectrum of Parents (low risk to high risk) The target audience for this program is anyone who has children in their care full- or part�time, and has been described to be a cultural revival program as much as a parenting program. This program was developed for participation by parents, guardians, foster parents, and/or extended family. Parents/care-givers who are interested in leadership and learning about Inuit perspectives on childrearing, healthy meals for families, communication strategies and child development are the key audience. This messaging was not clear in many communities during parent recruitment. There may have been a misconception that high-risk parents were the target audience in some communities. Some facilitators developed their own guidelines for recruitment by only advertising for couples, excluding extended family or single parents, which was not the intention. Single Parents One community was overwhelmed with phone calls from single mothers wanting to participate in the program. Many participants of the Inunnguiniq program in all communities were single mothers. Fathers/Men The few men who came to the program enjoyed it and often returned. On a number occasions the men who came spoke to their friends/relatives and invited them to the program. Sessions that included men tended to have fuller discussions delving deeper into the core content. Inunnguiniq Parenting Support Program Evaluation 2012 page 9 of 36 Qaujigiartiit Health Research Centre 10 One community planned to have a men/fathers only session where they would show the National Collaborating Centre for Aboriginal Health (NCCAH) DVD With Dad1; they had an experienced male facilitator lined up but were unable to follow through. Radio In communities who had active community radio stations, this was an effective way to share information about the program. Radio was also used to recruit childcare workers and Elders and notify the community if a class was cancelled. One community used the Inunnguiniq materials to conduct radio shows on Parenting. They offered prizes and reported this was well-received and increased program participation. General Program Comments Program Planning At the training, facilitator pairs were encouraged to meet either in Iqaluit with the Inunnguiniq Coordinators or upon return to their home communities to begin planning the implementation of their pilots. Facilitators that planned well in advance proved to have lasting programs with better attendance. Most facilitators scheduled a weekly planning time; those who followed through saw greater success. Introducing the Program Each community created their own introduction to the program and most did not start with module one session one. An introductory recruitment open house format provided a common first meeting and often involved food, games and prizes. One community implemented a 2-day introduction to the program over a weekend focusing on the healing component of Module 1. Elders and parents were invited to come and learn about the program and were provided opportunities to share their stories. This weekend was well attended and provided a strong foundation upon which to start the program. Most communities expressed the program had a slow start. After the first module was completed, most facilitators described a better cohesiveness and responsiveness among the group. Childcare It is essential that childcare be provided as part of the program and has been included in the program structure. It was recommended to facilitators that childcare be made available in all communities; some communities did not think this was necessary but discovered it helpful. When the children and parents were in the same building, this allowed for “We can start now!” - Inunnguiniq Parent Inunnguiniq Parenting Support Program Evaluation 2012 page 10 of 36 Qaujigiartiit Health Research Centre 1 a resource provided to facilitators with their program materials 11 parent-child interaction as needed/wanted. A few other community groups joined parents and children to enjoy their snack break together. One community decided to leave the parent and child rooms open to each other. Childcare workers were often difficult to find and reliability was low. Best practice was to have a number of workers on call; this was helpful when a large number of children were present and two workers were needed. Facilitators who called to remind the childcare workers had best results. Childcare workers with child-related education/ certification were ideal. One community planned their session during the times that the Aboriginal Head Start program was in operation. This allowed their pre-school age children an opportunity to learn traditional teachings at the same time as the parents. It was recommended by a facilitator that childcare workers submit a criminal record check before attending to children alone. Land Component Most facilitators were keen about this aspect of the program and many started planning and talking with their group about land excursions early on. Participants became engaged during planning; some offered to contribute personal belongings and equipment (sleds, snow machines, camping/ fishing gear, etc), as is natural in most communities. One program saw a group of mothers attend with one man participating. It was observed that he especially enjoyed being able to contribute to the land component of the program. He volunteered to guide, made equipment and planned for additional equipment to be available from community members on the day of the excursion. This may be one approach to attract men into the program, and has proven successful with other parenting initiatives in Nunavut 2 . It was noted in one of the NCCAH DVDs that the group was successful in involving fathers by saying they needed things done. When they identified a need for assistance it was easy to bring men into the program under the auspices of helping, but not participating. Once at the program the participants and facilitators would keep them working on projects while they inadvertently received the benefits of the program. Due to the weather and time constraints only a few groups were successful in leaving their communities to enjoy the plans they made for the land. Many improvised and had a celebration including fun, food and games at their local community hall where all family members and friends were invited to join in. Child: “mom, how come you are so calm when you come home from parenting?” Mother: “It must be working” - Reported by Inunnguiniq Facilitator Inunnguiniq Parenting Support Program Evaluation 2012 page 11 of 36 Qaujigiartiit Health Research Centre 2 ‘Fathers and Sons on the Land’ program developed and run by the Clyde River Ilisaqsivik Centre 12 Elders Sessions that involved an Elder in the planning of the session that they would later attend were most successful. Often when Elders were brought in without prior involvement in the planning for the session, there was a lack of understanding of roles and of their purpose in the program. This was especially so when communication barriers created additional challenges, for example if the Elder was unilingual or had limited abilities with English and the facilitators had limited Inuit language abilities. Food Planning for a snack break was done differently in each community. It was found that country foods were a favorite but difficult to find; facilitators often asked how they could get country food from coordinators or other communities. Additional ‘Checklist’ Resource for Facilitators It became evident in the first few weeks that facilitators were overwhelmed by the amount of material and were not sure how to get started. A trial one-pager summarizing the curriculum for the first session was created and sent out to the QHRC and Kitikmeot communities. This ‘checklist’ was reported to be useful for planning. Checklists were created for each of the 19 sessions. Each community was made aware of this resource and had access upon request. It is available in Appendix B. Participation Levels During the first sessions, facilitators reported that parents were hesitant to contribute. As familiarity grew among participants and with the program content, so did discussions and parent engagement. toward the end of the program pilot more parents provided support to one another; and facilitators used words such as ‘teamwork’ and ‘eager to help’ when describing interaction. This reinforces the considerable evidence for the strengths-based group setting for parenting support programs. With time and the establishment of a sense of belonging, facilitators reported that many of the parents in most communities became more open and shared ‘what they really needed to talk about’; they ‘let go of some long held hurts’. Table 1: Factors Affecting Participation Levels “I’m noticing that young people are wise and want to hear from us. They are very welcoming of us and want to learn from us.” - Guest Elder at Inunnguiniq Parenting PIlot “When the parents were quiet, body language spoke to us and told us that the parents were receptive” - Inunnguiniq Facilitator Inunnguiniq Parenting Support Program Evaluation 2012 page 12 of 36 Qaujigiartiit Health Research Centre 13 Factor Comment Self-esteem Facilitators identified that some of the participants appeared to lack confidence or have low self-esteem. When these individuals did share their voices were so soft they were difficult to hear. Quiet times/no response Facilitators reported that they would often ask questions and receive no response or experience periods of quiet. Elders Most communities noted that parents were keen to listen to and ask questions of the Elders. Participants were very interested in hearing and learning about how life was lived in the old ways. Communities who involved Elders had greater success with parent participation. Energizers Many communities reported using games and other energizers. This had the effect of relaxing the group and in turn facilitated discussion. Activity There was a high level of participation reported from all programs during the cooking components. Participation increased with program delivery that included experiential active learning. Inunnguiniq Parenting Support Program Evaluation 2012 page 13 of 36 Qaujigiartiit Health Research Centre 14 Facilitator Perspectives Two facilitators from each of the ten identified pilot communities attended the Inunnguiniq Parenting Support Program Training in Iqaluit, November 2011. Thirteen were successful in completing the program. Despite challenges, most facilitators enjoyed delivering the Inunnguiniq Parenting Support Program and many expressed interest in providing this service again. The most common themes are reported below. Additional facilitator and parent requests and comments can be found in the appendices. Group Type & Number Many facilitators waned to market the program to a particular demographic (open, closed, couples only, single parents, etc.), which was not the intent. However, these facilitators also were uncertain about what kind of group they wanted. Discussions and time revealed that open groups were most effective, where participants came and left the group over time. Initially, facilitators were concerned that there may be too many participants but this was never an issue. It is worth noting that the most successful group had a very close core group of parents with high attendance, participant retention, and little turnover. Elders Sessions were more engaging when Elders participated and contributed. It was reported that their presence had a relaxing effect on parents and facilitators making classes more enjoyable. Parents were more engaged when Elders were teaching and sharing stories; they had many questions for the Elders and were keen to learn from them. For some communities it was difficult to find and retain Elders. Reasons included: • Elder was sick • Weekends were not good for Elders • Elder became tired – session was too long • Elder did not want to read stories • The Elder remembered the story differently and this caused concern for “We are learning a lot when we are teaching. We are both learning so much from participants. “ - Inunnguiniq Facilitator “When Elders speak, it makes everyone feel good.” - Inunnguiniq Facilitator Inunnguiniq Parenting Support Program Evaluation 2012 page 14 of 36 Qaujigiartiit Health Research Centre 15 facilitators3 • Elder was unsure of their role • Language barriers • Difficulty finding translators Facilitators noted it helped when they contacted the Elders prior to class as a reminder and when the Elder knew they were not expected to stay for the whole class. Arviat Meeting Elders Elders involved with Inunnguiniq who were/are part of the Arviat Elders Advisory Group4 brought an incredible amount of significance to the program. Each time Moses Koihok, participant in Arviat Elders Advisory Group for many years, attended an Inunnguiniq session and shared stories, participants shed tears (this was interpreted by facilitators as tears of healing and a release of long held hurts). Moses said he was grateful to be asked to come and share his knowledge. Healing Many facilitators identified the need for healing (often both for themselves and for the parent participants) and wanted to offer a healing session but did not know how to approach this. It was recommended by The GN and QHRC program coordinators they bring in local professionals (mental health workers, counselors, wellness/addictions workers, social workers, etc.). Facilitators noted that Elders who come to the program may also need to heal5. Food The food components of the program were well received by facilitators and participants. Some facilitators reported it was the food component of the program that kept parents coming. Snacks, leftovers, and in some communities take home items in the form of a door prize, etc., provided additional food resources in the community that were evidently needed. Country food was sometimes difficult to obtain but always appreciated. Activity around food preparation was reported to provide respite for the more strenuous, internalized parts of the program. Participants “Eating together with family and Elders helps with family communication.” - Inunnguiniq Facilitator Inunnguiniq Parenting Support Program Evaluation 2012 page 15 of 36 Qaujigiartiit Health Research Centre 3 Facilitators were reminded that the textual stories provided in the curriculum were only to be used as guides and that ideally the Elder would recall and tell their own stories; however, this message did not seem to alleviate this perceived challenge for some facilitators. 4 Group created by the GN Department of Education to gather information about traditional Inuit life. They have been convening since Nunavut became a Territory (1999). Many of the stories and teachings in the Inunnguiniq program were derived from recordings of the meetings of this group. 5 Given the opportunity, Elders who have not been through a healing period may wish to form an Elder support/healing circle. 16 talked more openly during periods where they were preparing food as a group. Reading and Writing Most facilitators reported difficulties regarding the amount of reading associated with the program material. Parents were observed to feel uncomfortable; facilitators provided the following reasons: • They worry there is a right and wrong answer • They are not confident in their writing skills • They do know how to write well in English or Inuktitut. When they asked parents to write, facilitators were often unsuccessful in getting the responses they were aiming for. Facilitation and Group Skills A considerable amount of time was spent on facilitation and group skills during the Inunnguiniq Facilitator Training workshop. The group of facilitators implementing this series of pilots possessed a range of skills and abilities. Attributes of facilitators who felt successful and those who experienced greater challenges are identified below. Table 1: Attributes of Facilitators Who Felt Successful Attribute Comment Age Young Elders - people who have been through the parenting process and have adult children. Elder(s) It was requested by an Elder that a male and female Elder team is most effective; an Elder buddy approach is useful as it provides internal peer support to the Elders. Men To create balance it is best if there is at least one man on the facilitation team; when males were involved with the group they were always well received. Group facilitation experience Knowledge of group dynamics and the importance of observing and responding to group needs. Counseling skills and/or experience: Successful groups tended to disclose feelings around serious issues; facilitator teams need to be ready for this and able to offer individual follow up themselves or provide appropriate referrals to community professionals. Self-confidence Ability to handle a group on their own if other facilitators are unable to attend. Teamwork Prior experience working together is an asset; facilitators who know and are comfortable with each other produced the best results. Translation Facilitator teams that include one bilingual person who is comfortable translating as needed. Cooking experience Confidence in reading and following recipes and leading a group in healthy cooking and nutrition related content. Inunnguiniq Parenting Support Program Evaluation 2012 page 16 of 36 Qaujigiartiit Health Research Centre 17 Table 2: Attributes of Facilitators who Experienced Challenges Attribute Comment Appointed to act as facilitator Facilitators who were ‘appointed’ to the program (i.e. those who did not volunteer or self-nominate) proved ineffective. Planning Facilitators who did not spend time planning their program sessions in advance, with each other and/or with guest speakers (elders), experienced more challenges. Challenges Low Literacy: Too Much Writing/Reading/Text-based Resources Low literacy levels among facilitators and participants was the most frequently reported challenge for facilitators. Almost every facilitator commented on the amount of reading required to prepare for each sessions; most, at some point, felt overwhelmed. Facilitators reported that parents were reluctant to read and write and that this took them out of their comfort zone and created a barrier to communication and progress through the program. Many facilitators became creative with the delivery of their program to move away from the reading/writing components (such as self-reflection, journaling, etc.) and felt they successfully adapted program content. This, however, created more work for those facilitators and they reported a sense of overload and burnout. Some facilitators did not have sufficient facilitation skills to modify the curriculum; this resulted in a lot of reading from the book which proved ineffective (poor retention and attention among participants). Many participants and some facilitators reported not understanding the material because the language level of the curriculum was higher than their literacy level. Information gathering tools that were placed throughout the curriculum, such as the ‘Observation Challenge’ and ‘Ticket out the Door’, were often misunderstood. The need for healing Universally the need for healing was highlighted among facilitators and participants. Wanting to be responsive to parents, but not having the resources available (i.e. counselors or trusted professionals) to refer participants to, contributed to challenges for facilitators. One facilitator recalled a session that naturally turned into a healing session where everyone was touched, including the facilitator (see text box next page), but also “Many of our parents are drop-outs and have difQiculty reading and writing; some can’t read or write [in any language]“ - Inunnguiniq Facilitator Inunnguiniq Parenting Support Program Evaluation 2012 page 17 of 36 Qaujigiartiit Health Research Centre 18 noted that this was not the intent of the program and no one in the room was equipped with the skills to support a seriously distraught person in the event that this was needed (it wasn’t). Communication or Language Barriers Some facilitators reported that they experienced difficulties with resources that were not available in Inuktitut or in their specific regional dialect. These are common reports among all programs offered in Nunavut, and regional dialect differences are a common discussion point both within our organizations and in Nunavut as a whole. On occasion GN and QHRC program support coordinators experienced challenges with communicating with Inuktitut-speaking facilitators. In these cases program leads were contacted, though their level of involvement was minimal. Some facilitators were difficult to contact and slow to respond to messages for follow-up and teleconference calls. Cancelled Classes Most programs experienced a high number of missed classes due to the following reasons: • Illness • Facilitator/medical travel/family illness • Parents with sick children • Community illness (ex. Flu going around and everyone staying in) • Weather • Storm days (at least two in each community) • Weather too cold (no taxi in community) • Death(s) in community • School closed (in-service) • Community events (winter games, trade shows, etc) • No one, or only one person came so they decided not to have class • Facilitator away • Travel commitments (i.e. work or medical) • Having to attend to family concerns (some felt it took too much time away from their family) • Some facilitators were not comfortable managing a session alone so if the other could not make it the session was cancelled • Two facilitators left the position to take on other full time jobs (both reported to enjoy this job but needed the extra income and could not commit to both) Timeline Facilitators reported that the amount of material in the program was too large for the time Inunnguiniq Parenting Support Program Evaluation 2012 page 18 of 36 Qaujigiartiit Health Research Centre 19 period provided. Some sessions ran longer than the planned two hours and a few facilitators were unhappy with extra time commitment. Resource Bins Due to a number of factors: lack of organization within the bins; short time frame of program; and facilitators with other full-time jobs; the resource bins were reported to be as much of a hinder as a help. Many facilitators did not know where to start, were confused by the many papers, and had difficulty finding the right books. Some reported that resources mentioned in the curriculum were not included in their bin. Technical Difficulties Some pilot programs experienced unavoidable infrastructure or technical difficulties while implementing the pilots. • Internet down • No email address • Low computer literacy for email communication (power point presentations) • Fax machine in another office • DVD & TV unavailable or difficult to access Successful Approaches The implementation of each specific pilot became unique to each community as the facilitators were responsive to the needs and resources available to them. Successful delivery was dependent on facilitator literacy level and teaching style, comfort level in leading groups, community resources, and parent needs. There was a wide spectrum of delivery methods: one community read the curriculum directly from the book and, on the other side of the spectrum, one community chose a module topic such as “Living the Good Life” and then asked an Elder to come and share on this topic. GN and QHRC support coordinators continued to recommend that facilitators follow the curriculum as much as possible while remaining sensitive to parent needs. Soft starts Some groups opened with prayer and took time to do a ‘round table’ check-in about how each was feeling and if anything was bothering them or their children. It was reported that this allowed participants to ‘get things off their chest’ after which they were more clear-minded, not as pre-occupied, and ready for new learning. One group started each session with food and slowly eased into the discussion of program content. Group work - Circle discussions Inunnguiniq Parenting Support Program Evaluation 2012 page 19 of 36 Qaujigiartiit Health Research Centre 20 Facilitators noted that participants were more comfortable staying together in a large group. Many chose not to break into smaller groups and discussed things as a whole. This was reported to benefit group unity. Working while talking – Active hands It was noted in almost every group that activities naturally fostered communication and group dialogue. Participants felt more at ease while cooking, interacting with their children, or doing other kinds of activities. This mirrors ‘traditional’ or familiar modes of learning in Inuit communities, where a knowledgable individual would share knowledge, such as the role one plays in a family, to younger members of the community while simultaneously teaching an activity, such as sewing clothing. Recognizing and acting on opportunity When wellness professionals arrived from out of town, some facilitators invited them in as guest speakers. In all instances, guests were well received by participants. Partnering with professionals Participants enjoyed visits and information provided by local professionals: CHRs, Social workers, Mental Health and Wellness workers, CPNP workers, Addictions specialists and Counselors, Nutritionists, etc.. The importance of a safe and comfortable space One community group felt awkward in the meeting space they were allotted, so they partnered with the CPNP Program, which facilitators and participants were familiar with. This also helped with attendance. Another community responded to low attendance by partnering with another successful program. The benefits of collaborating with other community programs was noted as helpful not only to provide a safe a comfortable space for participants, but also increased comfort level and made participants feel at ease in a familiar space. Elders Elders who understood the purpose of the program and who were comfortable sharing traditional stories were essential to the program. Parents were significantly more engaged during these sessions and valued the links to traditional practices and ways of knowing. Food The inclusion of food was a critical component for success for a number of reasons including: participants needed the food or the meal (possibly because they had not eaten “Go out, eat outside, walk and talk, berry picking and chatting...let the kids play while parents talk in a natural relaxed setting“ - Inunnguiniq Facilitator recommendation “When they were busy working, they were also busy talking“ - Inunnguiniq Facilitator Inunnguiniq Parenting Support Program Evaluation 2012 page 20 of 36 Qaujigiartiit Health Research Centre 21 in some time); when the opportunity arose, they took food home to their families; sharing food is a traditional Inuit custom that is about harvesting, accomplishment, and celebration - sharing food at sessions made participants comfortable and contributed to increased participant retention. Responsive to needs of the parents Facilitators reported that when they were responsive to parent needs and flexible with the program material, the order of the sessions and the mood of the group on any given day, the group was more unified which resulted in a greater sense of belonging and increased participation. Facilitator sharing & honesty A facilitator for the most successful pilot, while leading a group on her own, shared her own feelings about her difficult week telling participants that ‘[she] almost did not come, but did so because of the people in the class and that [she] knew [she] would feel better after the group’. Parents were very responsive to her honesty and the facilitator reported that they “felt like a little family” as a result. Door Prize / Incentive Many communities provided a door prize or other incentive to recruit and retain participants. Most often this prize was healthy foods/groceries which parents were always grateful for. One community chose to always have a fruit basket door prize; this was very well received and had the added benefit of introducing new fruits to the homes. Recognizing accomplishments of participants “One instance where a woman was experiencing a particularly difQicult time in her life, the group asked to just have a sharing session to support this one person (this was a close-knit group). The facilitator (who was on her own that week) knew of a visiting counsellor who was well-known and received by the community. She called to see if he was available to come and help. He was not available at that time but asked if he could see the woman in need later in the day. When the facilitator offered a gentle reminder to return to the planned program, one participant said, “We are talking about parenting: healing, residential school...it’s all parenting.” The parents were clear that they felt that this discussion was what parenting was all about, “living life and getting through hard times”. They continued to share and support the woman and Qinally all hugged her. It was reported that the discussion involved overcoming grief associated with suicide, residential school abuse, sexual abuse, arranged marriage, and children born to women who experienced sexual assault. The parents left the session reporting feeling much ‘better and lighter’ than when they arrived. By creating a safe and supportive space and being responsive to group needs, parents were able to begin a healing process within themselves that they associated with being a better mother/father. - reported from most successful group Inunnguiniq Parenting Support Program Evaluation 2012 page 21 of 36 Qaujigiartiit Health Research Centre 22 The most successful group finished the program with a formal sit down dinner open to all family members. Their Elder said a prayer and read out a thank you note in their language. This note was laminated and presented to each participant as a keepsake. Parents were also presented with certificates of appreciation. Some gave a little speech and spoke from the heart. Each participant received a bag with health promotion items to take home with their thank you notes and certificates. Curriculum Specific Feedback General Comments The depth of the material as presented in this curriculum was noted to be somewhat difficult for parents. One reason that was identified was that many parents had not been exposed to this kind of traditional learning before and they were not sure how to digest and react to it. The parent exit questionnaire responses showed that each module was liked either “quite a bit” or “a lot”. Facilitators who did the parent evaluation as a group exercise also noted the following comments: “really liked the modules, good advice, helps a lot, more interested in Elders, healthy food, and kept me sober”. A number of facilitators used the sessions in the modules loosely and wove their way through the material as they felt best-addressed parent needs. Below are the highlights reported from facilitators for each of the curriculum modules. Module 1: Living a Good Life It was reported that module one would be better placed later in the program after the parents had established a sense of connection with the group as well as an understanding of traditional ways of learning through story. Module two was recommended to be a good starting point and Rhoda Karetak’s egg/rock/Inuk parenting analysis was recommended as a good introduction to help bridge into traditional teachings. Favourite Activities • Creating family agreements in the home • Inunnguiniq child development pamphlets • Stories “I’m telling him after the classes and he’s doing better now as a father, spouse. “ - Inunnguiniq Parent Inunnguiniq Parenting Support Program Evaluation 2012 page 22 of 36 Qaujigiartiit Health Research Centre 23 • Inuit Values • Inuit Maligait Koihok Story This story was received with mixed feelings among different groups. Some found it too emotionally difficult. Facilitators who were uncomfortable delivering the story were facilitating without Elders. Some participants also noted it made them feel uncomfortable (it was recommended they bring in an Elder to explain). Other groups were moved by the story. In one group it was reported to be emotionally touching; this worked to bring a sense of cohesion to the group. PATH Activity Many groups were not receptive to this tool. Some reported liking the idea of creating a path and goals, but there were difficulties around the PATH format. Some groups committed to continue working on it throughout the modules despite the confusion. Inuit Qaujimajatuqangit (IQ) Principles The Inuit Qaujimajatuqangit Principles as outlined by the Government of Nunavut were part of the curriculum. Some parents had not heard of the IQ principles before and participants were interested. Inuit Values cards One group, who were slow to engage with other content, responded very well to the Inuit Values. They began speaking to each other in their language and expressed interest in learning how the values related to the pictures. In this group when parents were asked “What does it mean to have a good life?” facilitators noted responses were mostly material; however after the values cards were introduced, the direction of the discussion changed and the parents were able to look deeper. Module 2: Relationship Building Session two was reported to be well-liked by parents as they became more engaged. Discussion highlights included: memories from childhood, what they want to pass on about their culture, discipline – how they were and how they want to be, and teaching respect in the home. Rhoda Karetak’s Fragile egg and hard rock: This was a favorite all around and generated good discussions; parents could relate. Many enjoyed the drawing activity and showing where each family was in this continuum. Naming This session was well liked by most participants and often initiaited in-depth discussions. Inunnguiniq Parenting Support Program Evaluation 2012 page 23 of 36 Qaujigiartiit Health Research Centre 24 Many expressed how they had never been taught the naming tradition, and now that they understood it, felt its’ significance and wanted to make it a part of their lives. One community felt that it may be too early in the program and that it may be better after the group is more comfortable with each other (this community did not have an Elder). When an Elder shared personal stories about naming, participants were engaged and moved, Elders speaking to this greatly deepened understanding. Ages and Stages Questionnaire This tool was reported useful in communities who tried it, though time did not allow for most communities to do so. One community brought in the children and facilitated parents while they worked through the questionnaires with their child(ren). This was fun and reported a great success.6 Inunnguiniq child development pamphlets These were well received in all communities. Parents were engaged and conversing over the text. Parents commented that the pamphlets would be useful as their children grow and develop. Rhoda’s Dream – Story of Burying the Baby Participants related well to this theme. Some communities had deep discussions about their culture dying; parents opened up to share personal difficulties with this. An Inuinnaqtun community noted the DVD was in Inuktitut and found it inaccessible. Parenting Styles This tool was useful for promoting discussion. Parents liked to talk about where they were, and where they wanted to be in this continuum. Eating Together as a Family This poster was used in some communities and generated discussion around eating practices. It proved very useful in one community where it sparked a positive conversation about how this is still a common practice and healthy way for families to spend time together. Discussion followed regarding using mealtimes as opportunities for family communication. Elder Stories One community, who was struggling and did not have Elder support, noted that the stories in the curriculum are now much better received as they are further into the program and have a context through which to make sense of things. They gave the example that Rhoda’s dream was heavy but that the parents understood now and could appreciate and Inunnguiniq Parenting Support Program Evaluation 2012 page 24 of 36 Qaujigiartiit Health Research Centre 6 Parent-child interaction during or after parenting sessions was noted as a valuable practice in parenting program research. Qaujigiartiit Health Research Centre (2010). Parenting Support Programs in Nunavut: A Review. Iqaluit, NU: Qaujigiartiit Health Research Centre p. 24. 25 relate to the deeper meanings. They noted that this was the first session they had parents laughing, talking and telling stories. Module 3: Teaching to the Heart Child’s ‘puuq/sack’ Participants found this interesting; they could understand and relate well to this idea. Good discussions ensued. Favorite Child This concept was most often misunderstood. Inutsiapagutit These were well received, especially when shared by an Elder. Some parents remarked how well they remembered these from their childhood and commented that they are not using them with their children and how they would like to do so. One community linked this into to the CBC Legend radio show recording of “The Two Sisters and the Orphan Shaman”; this was very successful in generating in depth discussion about the importance of teaching children. Module 4: Pilimmaksarniq Kiviuq Story Some of the younger parents had not heard of this story before and enjoyed it. In one community a facilitator re-wrote it in their own dialect and participants recognized and enjoyed hearing the story again. Another community read out the story; parents were interested and a good discussion followed. In a community without Elder support, this story was not well received. Maslow’s Hierarchy of Needs Many had no previous exposure to this idea and were interested. Household Responsibilities: This section was welcomed and enjoyed in all communities who presented it. It was evident that most homes do not share responsibilities equally and that most of the work is put onto the mother. Parents began to think about how they could include others in their family. Budget Planning This was appreciated and found useful. One group noted liking the part about identifying wants versus needs; they had not thought of this before. Other “When we teach our children something, like correcting them when they are bad, this melts their heart because we show them we care.” - Inunnguiniq Parent Inunnguiniq Parenting Support Program Evaluation 2012 page 25 of 36 Qaujigiartiit Health Research Centre 26 One community created a little book for each participant that the participants chose to call a “Plan of Care Agreement”. In this book were the Inunnguiniq principles, the household responsibilities worksheet, and the budgeting worksheet. This group understood the concept of sharing responsibilities, and liked the idea, but was uncertain of how to go about making this happen. The facilitator and guest instructor jumped into a role-play: One said, “I’m the mom and I’m good at cooking and cleaning so these will be my jobs”. The guest said “I’m the dad and I’m good at hunting and fishing so I will supply our meat” (this started the group laughing). The ‘parents’ labeled the participants as their ‘children’ and modeled by going around the circle asking each ‘child’ what they were good at (strengths), or what they liked doing. Each participant ‘child’ replied “I’m good at…” and then the mock parents replied, “then your job will be to …”. The participants thoroughly enjoyed this activity. It brought them understanding of how they could do this in a fun way with their family, how it would identify and bring out individual strengths, and how it would help in the home by sharing responsibilities. The role-play made it fun and easy to understand. The parents were pleased with this and looked forward to working with their families on their ‘Plan of Care Agreements’ standing by the Inunnguiniq principles.7 Module 5: Communication Storyboard / Book-making At this point in the program, facilitators were aware of literacy levels; many who reached this part of the curriculum incorporated creative methods included acting stories without words (mime), modeling how to tell stories without books, and telling stories from books using only the pictures. One community had well-known story-teller Donald Uluadluaq come in and talk about his storytelling experiences. He talked of his ability coming from hours of lying in the iglu at night listening to his parents tell stories. Participants were mesmerized. Donald’s storytelling creativity came from the oral tradition; he spoke about strengthening language and how sharing personal stories builds relationships and connections with children and improves family communication. This motivated parents to share their own stories and life experience. This energy was transformed into storybooks that were shared with the group and brought home for families. The typical ‘story builders’ that looked for the elements of plot, setting, character, etc. were not used; instead, Donald and the oral tradition inspired participants. Focused Discussion: Four Scenarios The scenarios were well-liked and created discussion; suggested delivery format was adapted. Inunnguiniq Parenting Support Program Evaluation 2012 page 26 of 36 Qaujigiartiit Health Research Centre 7 Role-plays have been identified as a successful tool in parenting programs. Qaujigiartiit Health Research Centre (2010). Parenting Support Programs in Nunavut: A Review. Iqaluit, NU: Qaujigiartiit Health Research Centre p. 25,28. 27 Connector - How Does Language Develop In a small group who had challenges getting discussions going, the facilitators role-played the different ways communication can be received and expressed. It was reported the group ‘had a lot of fun’ with this. Observation Challenge: Little feedback was provided about these in the community circles. One community reported that when they tried to explain these ‘it went over their heads’; in this group language was often a barrier. Other A woman was invited to come to this session with her two year old and five month old. Her two year old was reported to ‘speak like an old man’ and was very strong linguistically. Participants were amazed by this child’s ability to communicate. The mother then used her five month old to demonstrate how she speaks to her children in the early months to foster language development. This was an excellent conversation starter. The demonstration proved very effective.8 Module 6: Healthy Family Nutrition General Comments In general, the Nutrition sessions were very well received by both parents and facilitators. A number of facilitators noted that parents loved to cook together; it was as a convenient break from the content that some participants felt was more emotionally taxing; and that it was relaxing. Parents were talkative and shared stories more easily when there hands were busy with food preparation. • One pilot decided to group their regular parenting class with their regular weekly community cooking class (participants were identical for both groups except that the parenting group was beginning to decline in numbers). The result was that parents became more comfortable talking about the material. • A nutritionist from the Government of Nunavut visited one community and helped out with a Nutrition session. It was reported that the nutritionist left suggestions for improvements in the nutrition lesson plan book. Suggestions included ideas on formatting, clarity, and a few best-practice nutrition-related concerns. At the time of this report, we have not received this data. Timing and length of sessions In a community where parenting sessions were held only once a week, the Nutrition sessions were held on weekends in order to offer the complete program in the time frame Inunnguiniq Parenting Support Program Evaluation 2012 page 27 of 36 Qaujigiartiit Health Research Centre 8 Throughout the program, instances where demonstrations or role-plays were incorporated proved significantly more effective than talking about a subject. 28 allotted. Other communities made up lost sessions by arranging for cooking sessions on weekends; this practice was well received. Some facilitators found it useful to incorporate one of the Nutrition sessions in between each of the regular modules, instead of offering it as one separate module. Cooking classes often went over the two-hour time period. Most communities did not have time to do the learning activities and only completed the cooking part. Most communities had enough food for participants to cook and eat on-site as well as bring home leftovers to share with their families. Participants reported back that their families enjoyed and valued the home cooked meals. This process provided a group�family link. Some participants used it as a conversation starter with their families about the parenting class. One community, whose participants were regulars of the wellness weekly cooking class, were ‘a bit bored’ by the stir fry and pizza recipes and noted that they knew how to make a better pizza dough than the ‘no-yeast’ recipe provided. An idea came forth to build in multiple levels to the recipes so that more advanced cooks can be challenged. Another community used flour instead of cornstarch as they believed cornstarch would give them heartburn. Nunavut Food Guide Most communities shared this and participants were reported to be interested in learning about what was offered in the guide. The portion sizes were found interesting and helpful. Nutrition Budgeting This section was an ‘eye opener’; many parents believed that healthy food was more expensive than fast food. One noted this was the most helpful of the Nutrition modules. What I ate yesterday This was a fun activity enjoyed by participants who tried it. Hygiene One community, experienced at running cooking classes, added in an additional hygiene component that included hand, and fruit and vegetable washing. Char One group started with a fresh/frozen char and demonstrated how to prepare/butcher it for cooking. Many in the group had not seen this done before. Pizza For many participants this was the first time making pizza from scratch. Others with more experience did not follow the lesson plan but enjoyed making and eating the pizza. Some participants were happy to learn about whole-wheat flour and that this could be Inunnguiniq Parenting Support Program Evaluation 2012 page 28 of 36 Qaujigiartiit Health Research Centre 29 mixed with white flour to make a more nutritious meal. Other One group, who generally struggled, used their own ideas and were successful in joining learning with fun while teaching about healthy foods and budgeting. They asked parents to do a meal plan and budget for 7 days. The parents enjoyed this challenge and it proved a good learning experience. The group was also challenged to create a list of what they would buy with $100, then given the actual prices. They brainstormed how to cook different meals with the grocery list provided in the curriculum. When they made a game of learning, parents enjoyed it and appreciated the healthy food prizes9. Inunnguiniq Recipe Component A few communities reported trying these recipes though little feedback was presented. One community doing the “Nutrition Sessions” from the recipes at the back of the Inunnguiniq Parenting Curriculum and not from the Healthy Family Nutrition Module. During a guest presentation it was noted there was a section about leftovers and not wasting food so ‘they decided to look through the fridge and cupboards and make something with what they found’. The group was very happy and excited to be doing something different ‘not following a book’. They took out all the leftovers and had a good conversation about them. Cooking without a recipe was a ‘big hit’ for this group. Resources Time constraints significantly limited the use of the provided supplementary resources. NCCAH DVDs: The DVDs provided by the National Collaborating Centre for Aboriginal Health were well received when time and resources permitted viewing. It was noted that participants talked more after the viewings. Parents asked questions and were enthusiastic to see young children learn about their culture. Inunnguiniq Parenting Support Program Evaluation 2012 page 29 of 36 Qaujigiartiit Health Research Centre 9 For Nutrition Evaluation results see Appendices. 30 Recommendations for next phase of pilots Based on the data collected during this evaluation, the following recommendations are put forward for the next phase of pilots: 1) Divide the curriculum into 2 streams: • a course to be developed for the Nunavut Arctic College and • a stream-lined version that will be used for community parenting program facilitators 2) Revise the reading level of the materials for the parenting program 3) Remove some of the more complex curriculum structure, such as ‘observation challenges’ and ‘tickets out the door’ 4) Add-in more activity-based discussion. Add an additional activity resource to the Handbook 5) Develop a parent take-home booklet complete with checklists, IQ principles, Inuit Maligait, recipes, and budgeting tools. 6) Re-visit the healing component with Parenting Working Group to develop a plan for addressing this need. Conclusion The first pilot of the Inunnguiniq Parenting Support Program in Nunavut provided a welcomed need in the communities it served. Parents and Elders involved with Inunnguiniq noted its’ value and wanted to continue. Facilitators had some difficulties with program delivery due to literacy levels and program format. Food, and teachings delivered by Elders were the most frequently reported highlights. Inunnguiniq Parenting Support Program Evaluation 2012 page 30 of 36 Qaujigiartiit Health Research Centre 31 Appendix A - Parent Evaluation Questionnaire Results Three things I liked most about the program are: 1. Being around groups (people helping each other, sharing) 17 2. Elders & stories of times past 14 3. Learning / Parenting 11 4. Food related – cooking, learning healthy snacks, country food 11 5. Activities 4 6. Bringing children was allowed 2 The things I disliked are: 1. Very cold to come to program at night 2. Too much writing or reading / Too much forms to fill 3. Short time / Hours were too short You could improve the program by: 1. Recording the Elder stories/voices 2. More teaching by Elders 3. Teaching traditional activities like animal skinning and sewing 4. Playing more games 5. Having more healing 6. Adding more time to the schedule 7. Open to anyone in the community 8. Giving gifts to people who attend the program 9. Doing it in the warmer time of the year, during the day, during the evening, everyday, during the day in the summer Some tools that helped me were: Tool Not at all Somewhat Quite a bit A lot Inunnguiniq pamphlets 1 8 13 ASQ assessment 5 4 8 The PATH 1 1 8 7 Budget Planning 4 10 9 Responsibility Sharing 3 6 15 Good Habit Building 2 7 16 Recipe ideas 1 8 15 Storytelling ideas 1 6 17 Storybook/Writing ideas 1 4 6 10 Group discussions 5 5 14 Inunnguiniq Parenting Support Program Evaluation 2012 page 31 of 36 Qaujigiartiit Health Research Centre 32 IQ Handbook 2 2 5 11 Self-assessments 1 1 5 8 If this program offered a second phase I would attend: Yes No Each person who answered this question circled Yes. I would recommend this program to others: Yes No Each person who answered this question circled Yes. If a friend asked what this program was about I would tell them: In order of response frequency: 1. Learning from Elders / Learning traditional parenting 2. Getting together with other people 3. Eating and cooking healthy 4. Building self-esteem and encouragement After taking this program my children are: 1. Spending time listening to the stories I tell them from Elders 2. Really believing their namesakes and knowing that they have to help Elders when they need help 3. My number one priority 4. Touched, I don’t call him by his name as much as I used to, he noticed that and he likes it. Thank you very much; 5. Closer and loving, caring, changing, behaving better, helping me, understanding about parenting 6. Healthier, happier, listening more, still teaching them 7. Eating healthy food I cook for them and healthy snacks 8. I started teaching my child to sew, make bannock, cut fish Inunnguiniq Parenting Support Program Evaluation 2012 page 32 of 36 Qaujigiartiit Health Research Centre 33 Appendix B - Nutrition Evaluation Results Few of the pre- and post- nutrition module evaluations were returned; the ones received revealed that some of the questions were not understood. Pre Nutrition Module Questionnaire 1. Most parents reported that they knew what foods were healthy. 2. Barriers to obtaining healthy food included: 1. no means of transportation for harvesting country foods 2. single mothers had more difficulties in obtaining country foods 3. lack of money 3. Most participants reported ‘yes’ that children had skipped meals due to lack of money. Post Nutrition Module Questionnaire 1. Healthy foods recorded included: 1. Fruit & Vegetables 2. yogurt (tubes), milk, cheese 3. granola bars, crackers, bannock, cereal 4. ham 5. macaroni salad 6. country food 2. Ways to help children make healthy choices included: 1. child size plate 2. hand sizes 3. frozen fruit slushies 4. putting out healthy snacks 5. buying healthy foods 6. eating country foods 7. cooking healthy foods for young children 3. Regarding the ability to afford healthy foods for the family, there were close to the same ‘yes’ and ‘no’ responses. 4. Changes to help the family eat more nutritiously included: 1. make a list 2. cook from scratch/make own meals and snacks 3. stop eating at the Quickstop 4. eat more country foods. Inunnguiniq Parenting Support Program Evaluation 2012 page 33 of 36 Qaujigiartiit Health Research Centre 34 Appendix C - Requests & Comments from Facilitators & Parents Facilitator & Parent Requests Most communities requested: 1. More DVDs/audios of Elders - parents thoroughly enjoyed seeing and hearing Elders in video. The Elder present could listen to the story and then comment and/ or share a similar story. The CBC legends CD was recommended 2. More games, fun, and hands on activities, sewing while at class 3. A way to acknowledge dedicated parents, the ones who came regularly and showed noticeable efforts in implementing program material; ideas for this were certificates and food baskets 4. More hands-on activities, sew while at class 5. Help/ideas about recruitment and retention 6. Make curriculum only one book and more in point form 7. Change the program name10 Some communities requested: 1. Do not ask parents to read or write 2. To connect with other program facilitators to learn from each other 3. Prizes for games Responses from parents: “What more do you want to learn”: 1. How to manage children 2. How to discipline 3. How to teach our children as both parents 4. What is right/healthy for my children 5. Communicating 6. Relationship building 7. How to stop spoiling kids 8. Single parenting 9. How to deal with stress 10. First aid and CPR training Inunnguiniq Parenting Support Program Evaluation 2012 page 34 of 36 Qaujigiartiit Health Research Centre 10 This was brought up by one facilitator and echoed by all during the tele-conference. There was talk of stigma around the idea that if you go to a parenting program then you must be a bad parent. There were comments that this program is for everyone and that it is a program to help learn about culture. 35 Facilitator Comments 1. When the Elders speak it makes everyone feel good – many comments like this 2. I learned a lot about Inuit culture. It is a very Inuit program – lots of comments like this 3. ‘They can find what they are looking for in a story’ 4. One community reported that th