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Partnerships across the line: Arthritis research in a First Nations community Macdonald, Heather 2009

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Partnerships across the Line: Arthritis research in a First Nations community Nexus Spring Institute April 24, 2008 Heather McDonald, PhD(c), R.N. Margaret George, Claudette George Cheyenne Hood, Connie Thomas Acknowledgements ™ Tsleil-Waututh Nation – Community Advisory Committee – Research Assistants – Participants – Chief and Council ™ UBC supervisory committee ™ CIHR, MSFHR, APN Chair Outline ™ Background – Aboriginal health – Decolonizing research ™ Arthritis in First Nations – What happened – Community perspectives – Lessons learned Why Bother? ™ Aboriginal health: colonization – Past legacy of research • Bad blood research ™ Promising examples of how to do it right Decolonizing 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 research Decolonizing Methodologies ™ Linda Tuhiwai Smith: Self determination – Culturally appropriate – non exploitive – empowering – productive Other Guidelines ™ OCAP ™ CIHR ™ BC ACADRE ™ Paradigm of inquiry: Critical – Post colonial feminist + Aboriginal epistemology – Two-eyed seeing Arthritis in First Nations ™ Understanding the health gap – Historical practices – Current conditions – The health system • Organization • Delivery • Utilization Ethnographic Methods ™ Researcher as instrument ™ Prolonged engagement ™ Reflective journaling/Fieldnotes ™ PO and interviews – 15-25 Community members – 15-25 HCP ™ Document analysis Arthritis 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 program Community 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 confidentiality Community Perspectives ™ Claudette – Personal growth – Interview processes • The benefits of our tag team approach Community Perspectives ™ Cheyenne – Learning to be respectful of people’s boundaries – Learning about the health system Community Perspectives ™ Connie – Emotional effects – Training/gaining skills – Support – This is important work Lessons learned ™ Who does the interviews? ™ Interview protocols ™ Who is in control? – Community way of life/values ™ Learning and growing together – Takes time ™ Remain open Final thought ™ The goal of this research is to learn something ‘from’ rather than ‘about’ First Nations peoples (Marker, 2003)

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