Are we walking the talk of participatory Indigenous health research? A scoping review of the literature in Atlantic Canada

Abstract

Introduction Participatory research involving community engagement is considered the gold standard in Indigenous health research. However, it is sometimes unclear whether and how Indigenous communities are engaged in research that impacts them, and whether and how engagement is reported. Indigenous health research varies in its degree of community engagement from minimal involvement to being community-directed and led. Research led and directed by Indigenous communities can support reconciliation and reclamation in Canada and globally, however clearer reporting and understandings of community-led research is needed. This scoping review assesses (a) how and to what extent researchers are reporting community engagement in Indigenous health research in Atlantic Canada, and (b) what recommendations exist in the literature regarding participatory and community-led research. Methods Eleven databases were searched using keywords for Indigeneity, geographic regions, health, and Indigenous communities in Atlantic Canada between 2001-June 2020. Records were independently screened by two reviewers and were included if they were: peer-reviewed; written in English; health-related; and focused on Atlantic Canada. Data were extracted using a piloted data charting form, and a descriptive and thematic analysis was performed. 211 articles were retained for inclusion. Results Few empirical articles reported community engagement in all aspects of the research process. Most described incorporating community engagement at the project’s onset and/or during data collection; only a few articles explicitly identified as entirely community-directed or led. Results revealed a gap in reported capacity-building for both Indigenous communities and researchers, necessary for holistic community engagement. Also revealed was the need for funding bodies, ethics boards, and peer review processes to better facilitate participatory and community-led Indigenous health research. Conclusion As Indigenous communities continue reclaiming sovereignty over identities and territories, participatory research must involve substantive, agreed-upon involvement of Indigenous communities, with community-directed and led research as the ultimate goal.

Shifting paradigm from biomedical to decolonised methods in Inuit public health research in Canada: a scoping review

“…Academics led peer-reviewed publications though some included local public and political entities as coauthors. All these findings were consistent with systematic reviews in Canada183 184 and elsewhere 185 186…”

“…The review covered articles between 2010 and 2022, excluding earlier relevant articles. Our conclusions are about the current literature, although reviews without date restrictions reached similar findings 183 184 188. Since we focused on Inuit communities in Canada, results cannot be generalised without caution to other Circumpolar regions or Indigenous communities with historical, social contexts and research practices.…”

A methodological protocol for conducting a scoping review of health research on/by/with Indigenous women in North America

“…Specific to Indigenous women involved in Indigenous health research, Anderson and Cidro's [2] findings link to the systemic complexities entangled with gendered experience of community-engaged research. They and other scholars [30] point to the implications and future directions to address the structural inequities involved in Indigenous health research and to be grounded in Indigenous women's perspectives. A gendered view is needed to address gendered-violence and "to build a decolonial feminist resistance" [31].…”

Community Participation in Primary Healthcare in the South Sudan Boma Health Initiative: A Document Analysis

“…This finding aligns with several recent systematic reviews on community participation. 4,14,[30][31][32] A 2015 research synthesis reported that 95% of initiatives they reviewed engaged communities in implementing interventions, and only 18% involved them in identifying and defining problems. 4 A 2020 systematic review on community participation in humanitarian settings reported limited evidence on involvement of communities in framing issues or designing solutions.…”

“…They also mentioned that presence of women in Boma health committees was limited despite the requirement that one-third of the members were women. 31 Resource Mobilisation Proponents of the Alma Ata approach to primary healthcare have long warned against policy shifts that presume spontaneous community participation in healthcare without funding provisions. [40][41][42] The BHI is predominately dependent on external funding and expects the lower levels of government to contribute financially to the implementation of the policy.…”