Visioning Health: Using the Arts to Understand Culture and Gender as Determinants of Health for HIV-Positive Aboriginal Women

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Thesis by Tracey Prentice for her Doctorate of Philosophy in Population Health, University of Ottawa, 2015

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Abstract

Previous research, mostly on HIV-positive Aboriginal women (PAW) instead of with them, has focused primarily on their HIV-illness experience and the gaps and needs that arise from living with HIV. This has, arguably, allowed us to develop policies and programs to meet these needs; however, it has also contributed to dominant and disempowering representations of Aboriginal women living with HIV as troubled, vulnerable and in need of outside assistance. To counter-balance these negative representations and to co-create new strengths-based, culturally-relevant and gender-specific knowledge that can inform policies, programs and services for PAW, I partnered with PAW and Aboriginal community partners to develop a project that would provide PAW with an opportunity to tell a different kind of story about themselves than has previously been told by others.

Using an Indigenist Intersectional Population Health framework that was underpinned by a strengths-based, arts-informed, culturally-grounded and decolonizing community-based participatory approach to research, we engaged 13 PAW across three sites (Toronto = 5; Montreal = 4; ‘Virtual’ group = 4) in individualized group research processes to better understand PAW’s perceptions of health instead of illness and the intersecting roles that culture and gender can play in supporting the self-defined health of PAW. We also engaged in innovative, culturally-relevant and participatory knowledge translation and exchange (KTE) and developed policy and practice recommendations from our research.

Findings from Visioning Health suggest that PAW have a holistic and relational view of health that is grounded in their individual and collective identity as HIV-positive Aboriginal women. Health for PAW co-researchers has physical, mental, emotional and spiritual dimensions, and is fundamentally about ‘connecting’ and ‘feeling connected’ at multiple levels including self, others, community, culture, environment and Creator. Each of these levels is interrelated and each is grounded in Aboriginal cultures and ways of knowing that see all elements of the world as interconnected. This is consistent with previously published health concepts for Aboriginal peoples; however, this is the first articulation of PAW’s perspectives on health in the literature. PAW co-researchers also identified health-enabling strategies that they use to support their self-defined health, including understanding and resisting the broader context of colonization, reclaiming their voice and identity, creating safe spaces for themselves and their peers, and (re)connecting to Spirit. Given that the vast majority of policies and programs for PAW are based on Western concepts of health as predominantly physical, findings from this study can be used to inform strengths-based, culturally-relevant and gender-specific policies and practices that better fit the needs of PAW.

One of the most significant and unexpected findings of our study, however, is that the process of participating in our research was, in itself, health enabling. Consistent with their perspectives on health, PAW co-researchers reported that participating in Visioning Health helped them feel connected to themselves, to others, to their communities, and to their cultures. PAW co-researchers also referred to their participation in Visioning Health as ‘a healing journey’ and ‘damn good medicine’. While we did not design our project as an ‘intervention’, it is clear that Visioning Health worked as a holistic and integrated action for social change on several levels that are mutually reinforcing.

Policy and practice recommendations that flow from this research include: privileging PAW’s perspectives, grounding policy and practice in local Indigenous knowledges, highlighting PAW’s strengths instead of weaknesses, and incorporating a colonial analysis.