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Partnerships across the line: Arthritis research in a First Nations community Macdonald, Heather; George, Margaret; George, Claudette; Hood, Cheyenne; Thomas, Connie 2008

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Partnerships across the Line: Arthritis research in a First Nations communityNexus Spring InstituteApril 24, 2008Heather McDonald, PhD(c), R.N.Margaret George, Claudette GeorgeCheyenne Hood, Connie ThomasAcknowledgements� Tsleil-Waututh Nation– Community Advisory Committee– Research Assistants– Participants– Chief and Council� UBC supervisory committee� CIHR, MSFHR, APN ChairOutline� Background– Aboriginal health– Decolonizing research� Arthritis in First Nations– What happened– Community perspectives– Lessons learnedWhy Bother?� Aboriginal health: colonization– Past legacy of research• Bad blood research� Promising examples of how to do it rightDecolonizing Methodologies� Past research– Representation of peoples (savage/noble)– Interpretations– Harvesting indigenous knowledge– Best intentions• Whose problems?• Whose solutions?Decolonizing Methodologies� Current predicament– Neo-colonialism– Health disparities– Culture = disease– Boundaries• Researched to death• Only Aboriginals ought to do Aboriginal researchDecolonizing Methodologies� Linda Tuhiwai Smith: Self determination– Culturally appropriate– non exploitive– empowering  – productiveOther Guidelines� OCAP� CIHR� BC ACADRE� Paradigm of inquiry: Critical – Post colonial feminist + Aboriginal epistemology– Two-eyed seeingArthritis in First Nations� Understanding the health gap– Historical practices– Current conditions– The health system• Organization• Delivery• UtilizationEthnographic Methods� Researcher as instrument� Prolonged engagement� Reflective journaling/Fieldnotes� PO and interviews– 15-25 Community members– 15-25 HCP� Document analysisArthritis in First Nations� Becoming known and providing service� Community Advisory Committee– Memo of understanding– Culturally relevant; productive� Research Assistants–Training– Empowering?Community Perspectives� Go little white girl go– Accepted and optimistic about outcomes� What are we getting out of it?– Learning about arthritis (personal) and the health system (feeling like I’m not alone, chance to talk about my experiences)– Training about research– Employment– Research! (answers?) (improved health services?)– An opportunity to participate in a community programCommunity Perspectives� Margaret– One of first researches where there will actually be results.– Opens the door to better use of the system– People learning how to work with our own people– Issues of confidentialityCommunity Perspectives� Claudette– Personal growth– Interview processes• The benefits of our tag team approachCommunity Perspectives� Cheyenne– Learning to be respectful of people’s boundaries– Learning about the health systemCommunity Perspectives� Connie– Emotional effects– Training/gaining skills– Support– This is important workLessons learned� Who does the interviews?� Interview protocols� Who is in control?– Community way of life/values� Learning and growing together– Takes time� Remain openFinal thought� The goal of this research is to learn something ‘from’ rather than ‘about’ First Nations peoples (Marker, 2003)

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