Perceptions of HIV‐related health services in Zambia for people with disabilities who are HIV‐positive

Abstract

IntroductionDespite the emerging body of literature on increased vulnerability to HIV among people with disabilities (PWDs), there is a dearth of evidence related to experiences of PWDs who have become HIV-positive. This priority was identified by a disability advocacy organization in Lusaka, Zambia, where the prevalence of HIV and of disability is each approximately 15%. The purpose of this study was to explore perceptions and experiences of HIV-related health services for PWDs who are also living with HIV in Lusaka, Zambia.MethodsThis qualitative, interpretive study involved in-depth, semi-structured, one-on-one interviews with two groups of participants in Lusaka, Zambia: 21 PWDs who had become HIV-positive, and 11 people working in HIV and/or disability. PWDs had physical, hearing, visual and/or intellectual impairments. Interviews were conducted in English, Nyanja, Bemba or Zambian sign language. Descriptive and thematic analyses were conducted by a multidisciplinary, international research team.ResultsParticipants described their experiences with HIV-related health services in terms of the challenges they faced. In particular, they encountered three main challenges while seeking care and treatment: (1) disability-related discrimination heightened when seeking HIV services, (2) communication barriers and related concerns with confidentiality, and (3) movement and mobility challenges related to seeking care and collecting antiretroviral therapy. These experiences were further shaped by participants’ profound concerns about poverty and unmet basic needs.DiscussionThis study demonstrates how PWDs who are HIV-positive have the same HIV care, treatment and support needs as able-bodied counterparts, but face avoidable barriers to care. Many challenges mirror concerns identified with HIV prevention, suggesting that efforts to promote inclusion and reduce stigma could have widespread benefits.ConclusionsDespite the growing body of literature on increased risk of exposure to HIV among HIV-negative PWDs, this is the first published study to examine perceptions of testing, treatment and other HIV services for PWDs who have become HIV-positive. Findings reveal far-reaching opportunities for improving the quality of care for this population.

Disability and Living with HIV: Baseline from a Cohort of People on Long Term ART in South Africa

“…In fact, literature on people with disabilities and HIV suggests that mobility is a key issue when accessing health care. This is because health services and structurally related services such as transport are physically inaccessible to those with mobility limitations [ 46 – 48 ]. In addition, studies suggest that women with disabilities do not have the necessary support networks for adequate adherence as they more frequently report that they have been abandoned by their partners or families after disclosing their HIV or disability status [ 22 , 49 ].…”

Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia

“…While research on the challenges encountered by persons with disabilities in accessing health services in sub-Saharan Africa is growing [2,4,9,11,13–18], crucial practical information on their specific challenges and facilitators remains limited, particularly based on data collection directly from persons with disabilities living with HIV [15,18]. Understanding the unique experiences of persons with disabilities living with HIV from their own perspectives and experiences in accessing HIV services will help programmes to address their specific needs.…”

‘Are We Not Human?’ Stories of Stigma, Disability and HIV from Lusaka, Zambia and Their Implications for Access to Health Services

“…This paper focuses on experiences recounted by a group of Zambian persons participating in a study examining the intersectionality of HIV and disability[ 1 – 3 ]. The findings offered here concentrate on a specific feature of the data, namely the centrality of stigma in participants’ accounts.…”