‘‘We don’t exist’’: a qualitative study of marginalization experienced by HIV-positive lesbian, bisexual, queer and transgender women in Toronto, Canada

Abstract

From publisher: Background: Lesbian, bisexual, queer and transgender (LBQT) women living with HIV have been described as invisible and understudied. Yet, social and structural contexts of violence and discrimination exacerbate the risk of HIV infection among LBQT women. The study objective was to explore challenges in daily life and experiences of accessing HIV services among HIV-positive LBQT women in Toronto, Canada. Methods: We used a community-based qualitative approach guided by an intersectional theoretical framework. We conducted two focus groups; one focus group was conducted with HIV-positive lesbian, bisexual and queer women (n=7) and the second with HIV-positive transgender women (n=16). Participants were recruited using purposive sampling. Focus groups were digitally recorded and transcribed verbatim. Thematic analysis was used for analyzing data to enhance understanding of factors that influence the wellbeing of HIV-positive LBQT women. Results: Participant narratives revealed a trajectory of marginalization. Structural factors such as social exclusion and violence elevated the risk for HIV infection; this risk was exacerbated by inadequate HIV prevention information. Participants described multiple barriers to HIV care and support, including pervasive HIV-related stigma, heteronormative assumptions in HIV-positive women’s services and discriminatory and incompetent treatment by health professionals. Underrepresentation of LBQT women in HIV research further contributed to marginalization and exclusion. Participants expressed a willingness to participate in HIV research that would be translated into action. Conclusions: Structural factors elevate HIV risk among LBQT women, limit access to HIV prevention and present barriers to HIV care and support. This study’s conceptualization of a trajectory of marginalization enriches the discussion of structural factors implicated in the wellbeing of LBQT women and highlights the necessity of addressing LBQT women’s needs in HIV prevention, care and research. Interventions that address intersecting forms of marginalization (e.g. sexual stigma, transphobia, HIV-related stigma) in community and social norms, HIV programming and research are required to promote health equity among LBQT women.This research was supported by a grant from the Canadian Institutes of Health Research (CIHR). CHL was remunerated for writing this manuscript through a CIHR fellowship