Prioritizing the Health and Wellbeing of Indigenous Women Living with HIV
To ensure Indigenous women's voices were properly represented in CHIWOS, non-Indigenous CHIWOS researchers and Indigenous leaders in Canada came together to form an advisory board in 2012. At the time, the advisory board was named The CHIWOS Aboriginal Advisory Board: Prioritizing the Health Needs of Positive Aboriginal Women (CAAB-PAW). Although we now use the term Indigenous, we continue to use the acronym.
Through the CAAB-PAW, training for Researchers and Coordinators specific to Indigenous communities and issues was held at CAHR 2012 in Montreal and a CIHR Planning Grant was received enabling a retreat meeting in September 2012.
Funding was obtained to roll out CAAB-PAW activities in each of the 3 CHIWOS provinces (Ontario, BC, and Quebec), and two new provinces were engaged in CAAB-PAW activities (Saskatchewan and Manitoba).
CHIWOS Indigenous Women’s Data Transfer Ceremony
Held on April 5, 2017 on the unceded territory of the Kanien'kehá:ka people, this ceremony was a monumental event during which quantitative data of the 318 Indigenous women living with HIV who participated in CHIWOS was transferred to Indigenous academic and community leaders.
This ceremony was in line with the Truth and Reconciliation Commission of Canada, Indigenous research ethical protocols, such as Ownership, Control, Access, Possession (OCAP®) and equivalent Métis and Inuit principles.
Guided by an Elder who offered Teachings and Opening and Closing Prayers, the ceremony included gifting, drumming, and song. This event highlighted Indigenous peoples’ right to self-determination, to be treated as respected partners in matters affecting them, and to be able to control and protect their traditional knowledge. Approximately 50 researchers, trainees, and coordinators were in attendance.
Click here to read about the Data Transfer Ceremony in our paper, "A Journey of Doing Research “In a Good Way”: Partnership, Ceremony, and Reflections Contributing to the Care and Wellbeing of Indigenous Women Living with HIV in Canada".
Over the course of multiple gatherings conducted over 1 year with the same group of women, the BC PAW team utilized arts-based research methods, Indigenous teachings and ceremony, and Sharing Circles to collect and analyze women’s perspectives and experiences of their health and healthcare. Click here to read the findings.
Two Indigenous Community Research Associates each held monthly Sharing Circles with Indigenous Women Living HIV in their respective communities for more than a year. A three-day research retreat involving drum-making, cultural ceremonies, a short survey and two audio-recorded Sharing Circles was then held in each of the communities (Toronto and Thunder Bay).
Six Women participated in each retreat. The Toronto-based Women all reported that their health became a priority for them when they became connected to their culture. They tried to balance Western and traditional medicine, and thought healthcare providers should as well. The participants wanted to know more about healthy aging. In comparison, the Thunder Bay Women identified a desire for connection (to family, culture, community, and healthcare providers) as their top priority. They shared that building connections was challenging due to HIV stigma and lack of education, particularly for adults in the community. They also shared that typical healthcare was a last resort due to experiencing past discrimination in healthcare settings.
The MB PAW team used the “medicine wheel” to identify women’s needs and service organizations. Executive directors or managers from 12 organizations in Manitoba were interviewed. All 12 organizations provided services for Indigenous Women Living with HIV and all used a social determinants of health approach to health service provision. Four organizations reported providing services in “non-traditional” and “decolonizing” ways, such as enabling their service users to take an active role in service provision and organizational management.
Following the environmental scan, the MB team led Mâmawi wâhkôtowin (Cree for “community relations”). In a two-day gathering, the Women collectively created a medicine wheel quilt, using words and images to express themselves. The creation of the quilt included ceremony, teachings from a Knowledge Keeper, collage, discussion, a feast and healing activities. Women described wellness as communicating with and listening to others, learning from Elders, walking, and being with family. Barriers to wellness included complex trauma, flawed systems, challenges with HIV disclosure, and violence from men.
The QC PAW team prioritized the relationships with participants by holding four retreats with the same participants. The retreats integrated opportunities for women to acquire personal benefits (e.g. connect and feast with other Indigenous Women Living with HIV, arts-based activities, increase knowledge), while contributing to the research. Fourteen Women participated. Through Sharing Circles, the Women situated HIV within the wider context of their lives, providing recommendations for addressing the HIV epidemic from redressing social-structural inequities (e.g. gender relations) to more immediate strategies (e.g. peer-led groups, culturally rooted care). Addressing HIV, and wellbeing generally, included tending to self-esteem, cultural continuity, and healthy relationships, and committing to addressing trauma, violence, mental health, and stigma.