Can the democratic ideal of participatory research be achieved? An inside look at an academic–indigenous community partnership

• Published in: Health education research 2008-10, Vol.23 (5), p.904-914
• Main Authors: Cargo, Margaret, Delormier, Treena, Lévesque, Lucie, Horn-Miller, Kahente, McComber, Alex, Macaulay, Ann C.
• Format: Article
• Language: English
• Subjects: Academic Achievement; Adult; Advisory Committees; Canada; Capacity Building; Community Attitudes; Community Involvement; Community Leaders; Community Participation; Community Relations; Community-Institutional Relations; Cultural Relevance; Decision Making; Diabetes; Diabetes Mellitus, Type 2 - ethnology; Diabetes Mellitus, Type 2 - prevention & control; Ethics; Female; Foreign Countries; Health Promotion; Health Services, Indigenous - organization & administration; Health technology assessment; Humans; Hypothesis Testing; Indians, North American; Indigenous people; Indigenous Populations; Male; Middle Aged; ORIGINAL ARTICLES; Participatory Research; Partnerships; Partnerships in Education; Physical Environment; Prevention; Researchers; School Community Programs; School Community Relationship; Selfdetermination; Stakeholders; Surveys
• ISSN: 0268-1153; 1465-3648
• DOI: 10.1093/her/cym077

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.