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Social identity, agency, and the politics of adherence to antiretroviral therapy in HIV/AIDS care Berkhout, Suze Gillian

Abstract

Within Vancouver’s Downtown Eastside community, gendered disparities exist with respect to uptake and continuity of antiretroviral therapy; limited access and adherence to therapy is commonly reported in the medical literature concerning women in the community. These findings are particularly hard to reconcile, as HIV treatment exists amidst a range of neighbourhood health and social support services that are ostensibly accessible to all through a universal health care system. In this dissertation, I examine conventional approaches to facilitating treatment uptake and adherence along with dominant narratives employed to explain treatment challenges faced by women in Downtown Eastside Vancouver. Bringing together discourse analysis, qualitative interviewing, and participant observation with HIV-positive women and their health care providers I propose an alternate lens with which to examine gender disparities in HIV care. I argue that discourses of adherence to antiretroviral therapy are suffused with cultural imagery and tropes associated with women at high risk of HIV infection: images of sex work, drug use, homelessness, and mental illness. Additionally, an individualist, rationalist bias exists within much of the North American literature regarding women’s access and adherence to care; the literature finds points of convergence with larger normative frameworks of liberalism within medical practices. Contrary to a conventional emphasis on psychosocial “barriers” to care, I focus on social interests, institutional authorities, relations of power, and strategies of social control. These are exerted on, resisted, and internalized by women attempting to negotiate care. I also suggest how a normative liberal framework underpinning HIV research and care may have the inadvertent consequence of further entrenching images of HIV positive women as deviant, dangerous, and/or irrational. My reframing issues of access and adherence as matters of negotiation and negative agency leads me to discuss the ways in which liberal conceptions of autonomous agency are employed within discourses of HIV/AIDS care, structuring health care decision making and possible courses of action. The arguments I offer endorse a constitutively relational account of the self and autonomy. A relational account can, I argue, provide insight and guidance concerning adherence to antiretroviral therapy.

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