Family Matters came about as a result of requests from our membership. We are working with the University of Victoria and a number of our partners and community members. There are three main parts to the project:
- Identify the formal and informal types of HIV-related supports, services, policies and programs that are currently available for Aboriginal people living with HIV/AIDS (APHAs) and their families;
- Explore the impact of HIV on the family, based upon the perspectives and experiences of different members of Aboriginal families affected by HIV; and
- Share the findings, and work together to identify priorities for Aboriginal culturally informed, family-based programmatic primary and secondary intervention options.
It was important to ground the project in Indigenous methodology (ways of doing the research) and we considered this throughout the research process. We used what we already know and consulted a number of people including APHAs, Elders and researchers in designing new methods/processes for this project.
A literature review was completed to inform us what has been done in the area of supports for families affected by HIV. In short, not much is available. We also launched a national online survey and received 101 responses from APHAs and people affected by HIV and program/services personnel. These responses will assist us in making recommendations for revisions to existing programs and the development of new ones.
We are honoured and acknowledge the courage and generosity of the people, including many of you, who have shared your/their experiences with us through the storytelling circles. Each circle was lead by an Aboriginal regional Elder and the participants were selected to represent the diversity of the community. We held two circles (1 circle for people living with HIV and 1 for people affected by HIV) in Victoria, Regina, Ottawa and Halifax. We also held a Two-Spirit/Transgender and youth-specific circle to ensure their voices were heard. In total, fifty-one people participated in the circles.
As part of the analysis process, we hosted a national gathering in Victoria from February 23-25. We designed a new process that was grounded in Indigenous ways based on the principals of a village. People living with and families affected by HIV, including children came together with program people and researchers and spent one day discussing the findings from the storytelling circles. There were eight locations in the “village” to gather including a children’s area in the centre, a beading/coloring place and six research theme-specific areas (Children, Trauma-Loss-Resilience, Meaning Of Family, Supports, Impact of HIV on Families and Family Experiences). Participants moved around the areas in the direction of the territory prompted by a drum song. Forty-six people participated with most of them visiting the six theme areas. Ceremony, song, dance and stories were used throughout the gathering to wrap the process in our culture and maintained a safe space for all.
We look forward to providing a more detailed presentation of the findings at our upcoming CAAN AGM in June and through reports that will be made available to people on-line and in printed versions. We are currently looking at ways to move from findings to evidence-based action and will continue to identify ways to further this important work!