Sarah Flicker1, Patricia O'Campo, Renée Monchalin, Jesse Thistle, Catherine Worthington, Renée Masching, Adrian Guta, Sherri Pooyak, Wanda Whitebird, Cliff Thomas. 1. Sarah Flicker, Renée Monchalin, and Jesse Thistle are with the Faculty of Environmental Studies, York University, Toronto, Ontario. Patricia O'Campo is with the Centre for Research on Inner City Health, St. Michael's Hospital, University of Toronto, Toronto, Ontario. Catherine Worthington is with the School of Public Health and Social Policy, Victoria, British Columbia. Renée Masching is with the Canadian Aboriginal AIDS Network, Dartmouth, Nova Scotia. Adrian Guta is with Carleton University, Ottawa, Ontario. Sherri Pooyak is with the Canadian Aboriginal AIDS Network, Victoria, British Columbia. Wanda Whitebird is with the Ontario Aboriginal HIV/AIDS Strategy, Toronto, Ontario. Cliff Thomas is with the Canadian Aboriginal AIDS Network, Ottawa, Ontario.
Abstract
OBJECTIVES: We examined the role that Indigenous Elders can play in ensuring that community-based research (CBR) is conducted ethically. METHODS: We present data from a larger qualitative study exploring ethical issues that occur in HIV-related CBR through the experiences of researchers engaged in CBR. Between May 2010 and July 2011, we interviewed 51 academic and community research team leaders of federally funded HIV CBR studies. We used thematic analysis techniques to identify themes. RESULTS: Participating researchers engage Elders in research because Elders are keepers of Indigenous knowledge, dynamic ethical consultants, community protectors, and credible sources of information who are able to counsel and support, mediate conflict, provide local context and history, and conduct ceremonial roles. Potential challenges cited by participants to engaging Elders in research include finding the right "fit," approaching Elders in a culturally appropriate way, and bureaucratic environments that do not honor Indigenous processes. CONCLUSIONS: Culturally appropriate Elder engagement in HIV CBR with Indigenous communities is vital for promoting positive relationships and culturally safe research that respects ceremony and Indigenous ways of knowing.
OBJECTIVES: We examined the role that Indigenous Elders can play in ensuring that community-based research (CBR) is conducted ethically. METHODS: We present data from a larger qualitative study exploring ethical issues that occur in HIV-related CBR through the experiences of researchers engaged in CBR. Between May 2010 and July 2011, we interviewed 51 academic and community research team leaders of federally funded HIV CBR studies. We used thematic analysis techniques to identify themes. RESULTS: Participating researchers engage Elders in research because Elders are keepers of Indigenous knowledge, dynamic ethical consultants, community protectors, and credible sources of information who are able to counsel and support, mediate conflict, provide local context and history, and conduct ceremonial roles. Potential challenges cited by participants to engaging Elders in research include finding the right "fit," approaching Elders in a culturally appropriate way, and bureaucratic environments that do not honor Indigenous processes. CONCLUSIONS: Culturally appropriate Elder engagement in HIV CBR with Indigenous communities is vital for promoting positive relationships and culturally safe research that respects ceremony and Indigenous ways of knowing.
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