title: Can the democratic ideal of participatory research be achieved? An inside look at an academic-indigenous community partnership.
abstract: Democratic or equal participation in decision making is an ideal that community and academic stakeholders engaged in participatory research strive to achieve. This ideal, however, may compete with indigenous peoples' right to self-determination. Study objectives were to assess the perceived influence of multiple community (indigenous) and academic stakeholders engaged in the Kahnawake Schools Diabetes Prevention Project (KSDPP) across six domains of project decision making and to test the hypothesis that KSDPP would be directed by community stakeholders. Self-report surveys were completed by 51 stakeholders comprising the KSDPP Community Advisory Board (CAB), KSDPP staff, academic researchers and supervisory board members. KSDPP staff were perceived to share similar levels of influence with (i) CAB on maintaining partnership ethics and CAB activities and (ii) academic researchers on research and dissemination activities. KSDPP staff were perceived to carry significantly more influence than other stakeholders on decisions related to annual activities, program operations and intervention activities. CAB and staff were the perceived owners of KSDPP. The strong community leadership aligns KSDPP with a model of community-directed research and suggests that equitable participation-distinct from democratic or equal participation-is reflected by indigenous community partners exerting greater influence than academic partners in decision making.
authors.affiliation: Psychosocial Research Division, Douglas Hospital Research Centre-McGill University, Verdun, Québec, Canada H4H 1R3. margaret.cargo@unisa.edu.au
authors.forename: Margaret
authors.initials: M
authors.lastname: Cargo
authors.forename: Treena
authors.initials: T
authors.lastname: Delormier
authors.forename: Lucie
authors.initials: L
authors.lastname: Lévesque
authors.forename: Kahente
authors.initials: K
authors.lastname: Horn-Miller
authors.forename: Alex
authors.initials: A
authors.lastname: McComber
authors.forename: Ann C
authors.initials: AC
authors.lastname: Macaulay
mesh_terms: D000328:Adult; D002170:Canada; D003256:Community Participation; D003159:Community-Institutional Relations; D003924:Diabetes Mellitus, Type 2 / Q000208:ethnology / Q000517:prevention & control*; D005260:Female; D006303:Health Services, Indigenous / Q000458:organization & administration*; D006801:Humans; D007198:Indians, North American; D008297:Male; D008875:Middle Aged