Background: Indigenous peoples in Canada bear a disproportionate disease burden for hepatitis C (HCV) with prevalence rates up to ten times those of the non-Indigenous population. This issue must be framed within the context of historical and ongoing trauma for First Nations, Inuit and Métis. The newly available and highly effective HCV therapeutics have transformed the treatment landscape. There is a pressing need for Indigenous leadership in this area, developing an appropriate HCV research agenda, programs and policies that will realise health equity for Indigenous peoples.
Method: We conducted four concurrent sharing circles (one male, two female and one two-spirit) in which Indigenous people with diverse lived HCV experience discussed HCV research priorities. Indigenous Elders guided the sharing circles, which were held as part of a wellness ceremony. The sharing circles were taped, transcribed verbatim, and then the transcripts were analysed qualitatively using grounded theory. Themes and sub-themes were identified. The results were subsequently validated with other Indigenous communities, helping to build a comprehensive understanding of community driven research and health priorities for HCV.
Results: Several crosscutting themes were identified, with both individual and system-level factors impacting peoples’ life course with HCV. The key themes include the strength and resiliency of First Nations, Inuit and Métis living with HCV, as well as their families and communities; intersections of multiple HCV risk factors; issues related to the continuum of care; competing priorities in one’s life; reduced health literacy; and the importance of transformation and finding purpose along one’s healing journey with HCV. Ways forward that honour Indigenous Knowledges and Ways of Knowing were identified.
Conclusion: This project highlights the criticality of Indigenous leadership in setting HCV research priorities, programs and policies pertaining to First Nations, Inuit and Métis. Indigenous research methodologies and Ways of Knowing privilege community voice and lived experience. There must be a focus on innovation, self-determination, service integration, cultural safety, wholism, Indigenous values and the application of strengths-based approaches. The themes identified in the Water Journey project must be taken into consideration across the realms of HCV research, policy, prevention programs and throughout the care continuum.