The research team engaged, supported, and walked with Aboriginal women living with HIV and/or HCV. Community-based research navigators (CBRNs) were a key ingredient in the success of this project that used community-based participatory research (CBPR) approach, Indigenous story-telling, and mutual learning methods. CBRNs were women who worked at All Nations Hope Network and were trained to conduct surveys and one-on-one in-depth interviews. They also worked to establish relationships with participants and walked alongside them for the course of the project (and beyond, as these relationships continue today).
The research team acknowledges the complexity of Indigenous women’s individual and collective journeys. We honour the contributions of the women from the community to Digging Deep – without them, we would have no story to share.
Community-based participatory research is an appropriate methodology for research with, by and for Aboriginal communities because the practice promotes equity among the researchers and the participants (Cave & Ramsden, 2002). CBPR practice also includes reflection, action and is intended to focus on systematic inquiry to effect social change (Cave & Ramsden, 2002). CBPR focuses on the participant’s strengths and helps them realize/recognize these strengths through the research process (Cave & Ramsden, 2002).
Indigenous story-telling and mutual learning were the preferred methods for this project as they provide a culturally relevant way of gathering information and fit well with how we engaged participants via in-depth interviews as a means of supporting them in telling their stories. As Kovach (2009) notes, “story” is an Indigenous methodology. Stories originate from oral traditions within Indigenous societies around the world. There is an inseparable relationship between story and knowing and an interrelationship between narrative and research. Story and Indigenous research are grounded within a relationship-based/reciprocal approach to research (Kovach, 2009).
Data collection: The CBRNs conducted in-depth individual interviews with Aboriginal women affected by HIV and/or HCV – most of these women were recruited at ANHN and other community-based agencies such as AIDS Programs South Saskatchewan and Carmichael Outreach. These in-depth interviews explored women’s experiences with historical and intergenerational trauma, and how these might impact or influence how social determinants of health play/played in their intravenous drug use, HIV and/or HCV status. We wanted to use the interviews to guide and direct how best to enhance the strengths, address the issues and barriers they face and what kinds of programs, services, and policies need to be available or adapted.
Additionally, CBRNs interviewed health practitioners, partner administrators or program coordinators and physicians to understand how they understand Aboriginal women’s lived experience, define cultural safety, and how they understand culturally safe services or service delivery. We wanted to learn more about how their understandings support or conflict with the individuals’/clients’ understandings because it was important to understand both sides of the story to develop a model of culturally safe care for Aboriginal women living with HIV and/or HCV.
Participatory Data Analysis was undertaken by the team. An inductive and thematic analysis was completed with the interview data (both the women and the service providers) and included all research team members (as they were available). This included the CBRNs, Research Assistants, Elders, community team members, and academics. We gathered in the community lab to review transcripts after which the initial qualitative analysis was completed and we had some concepts and themes to begin discussing and organizing our perspectives regarding the data.
Data collected from the surveys were entered, cleaned, and analyzed initially by the research assistants and CBRNs using SPSS software. Again, the CBRNs, Research Assistants, Elders, community team members and academics will gather to review the data findings and assist with interpreting the findings and writing the interpretation.