DISABILITY EXPERIENCED BY SOUTH ASIAN WOMEN LIVING WITH HIV IN SOUTHERN ONTARIO

Abstract

Purpose: In Ontario, there is a steady rise in the HIV incidence among South Asian women. However, the health-related challenges and the disability experienced by this population are under reported. Hence, this study aims to understand the disability experience and utilization of rehabilitation services by the South Asian women living with HIV in Southern Ontario, Canada. Method: I used an interpretive phenomenological study design to explore the ‘lived experience’ and ‘meaning’ of disability experienced by South Asian women living with HIV. I recruited English-speaking immigrant South Asian women living with HIV through the Alliance for South Asian AIDS Prevention (ASAAP). I conducted in depth face to face interviews using body mapping and photo-elicitation techniques. All the interviews were transcribed verbatim and a thematic analysis approach was utilized to understand the disability experiences and rehabilitation needs of the women. Findings: Eight women volunteered for this study with six agreeing to be interviewed on a second occasion. The mean age was 47.1 years (s.d=5.8), and mean length of time since HIV diagnosis was 15.1 years (s.d=6.7). Analysis resulted in four major themes: “experiencing disability”, “building resilience”, “experiencing discrimination” and “accessing health care”. The women described several health challenges due to the side effects of anti-retroviral medications, compounded by challenges associated with immigration, HIV stigma, and discrimination. The complex intersection of illness, gender, ethnicity, and discrimination affected their overall disability experience. Despite these challenges, the women manifested resilience by re-constructing their identities, specifically by exhibiting perseverance in the midst of their health challenges, isolation, and patriarchal culture. Women lacked understanding about rehabilitation services in the context of HIV. Conclusion: This study draws attention to marginalized women living with HIV whose voices are rarely heard, and profiles their experiences of disability. Understanding the disability needs of marginalized women living with HIV, through a phenomenological lens could help to facilitate the development of culturally safe treatment approaches and health care policies, which can lessen their disability and improve their quality of life.