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

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.

Creating a safe space for First Nations youth to share their pain.

INTRODUCTION: Indigenous children and youth may be quiet about the way they express their pain and hurt which is in contrast to how health professionals are trained to assess it. OBJECTIVES: The aim was to understand how youth from 4 First Nation communities express pain using narratives and art-based methods to inform culturally appropriate assessment and treatment. METHODS: This qualitative investigation used a community-based participatory action methodology to recruit 42 youth between 8 and 17 years of age to share their perspectives of pain using ethnographic techniques including a Talking Circle followed by a painting workshop. Physical pain perspectives were prominent in circle conversations, but emotional pain, overlapping with physical, mental, and spiritual pain perspectives, was more evident through paintings. Art themes include causes of pain and coping strategies, providing a view into the pain and hurt youth may experience. Youth were more comfortable expressing emotional and mental pain through their artwork, not sharing verbally in conversation. RESULTS: Circle sessions and artwork data were themed using the Indigenous Medicine Wheel. Content of the circle conversations centered on physical pain, whereas paintings depicted mainly emotional pain (eg, crying or loneliness; 74% n = 31) with some overlap with physical pain (eg, injuries; 54%), mental pain (eg, coping strategies; 31%), and spiritual pain (eg, cultural symbols; 30%). Common threads included hiding pain, resilience, tribal consciousness, persistent pain, and loneliness. CONCLUSION: Once a safe space was created for First Nation youth, they provided a complex, culturally based understanding of the pain and coping experience from both an individual and community perspective. These engaging, culturally sensitive research methods provide direction for health providers regarding the importance of creating a safe space for young people to share their perspectives.