‘Remember there is that thing called confidentiality’: experiences of institutional discrimination in the health system among adolescent boys and young men living with HIV in the Eastern Cape province of South Africa

Abstract

Adolescents and men are two populations that perform poorly within the HIV cascade of care, having worse AIDS-related health outcomes, and experiencing higher levels of HIV-related stigma. This paper explores institutional health system discrimination as experienced by adolescent boys with perinatally-acquired HIV, situating them within the social and gendered contexts of the Eastern Cape Province, South Africa. Life history narratives (n = 36) and in-depth semi-structured interviews (n = 32) with adolescent boys living with HIV aged 13–22 were conducted in 2017-2018. In-depth semi-structured interviews with biomedical and traditional health practitioners (n = 14), analysis of health facility files (n = 41) and clinic observations were also conducted. Together, triangulated sources point to an incongruence between the complex needs of adoelscent boys and young men living with HIV and their experiences within the health system. Two institutional discrimination-related deterrents to retention in care were identified: (1) lack of confidentiality due to health facility layouts and practices that visibilised people living with HIV; and (2) mistreatment in the form of shouting. This article contributes to the limited literature on the experiences of young men within the HIV continuum of care, focusing on how stigma influences how young men experience and engage with the health sector.

Keywords:

• Stigma
• adolescence
• masculinity
• South Africa
• HIV
• care

Acknowledgements

First and foremost, thanks go to the research participants for sharing their perspectives and experiences that formed the basis of this research. Evidence was gathered within the auspices of a large longitudinal study on medicine-taking in the Eastern Cape, the Mzantsi Wakho study. We are grateful to co-principal investigators Lucie Cluver and Elona Toska, study collaborators at the Universities of Cape Town and Oxford, and the researchers who supported data collection and analysis, Thank you to Christopher Colvin for supervising the doctoral thesis on which this paper builds.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Financial support was provided by Evidence for HIV Prevention in Southern Africa (EHPSA), a DFID programme managed by Mott MacDonald (MM/EHPSA/UCT/05150014). Lesley Gittings was supported by the South African National Research Foundation (NRF) Innovation scheme for doctoral student funding, the University of Cape Town AIDS and Society Research Unit (ASRU), the South African Social Science and HIV (SASH) Programme, an initiative funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (Award #R24HD077976) and the Social Sciences and Humanities Research Council of Canada (SSHRC). Christopher J. Colvin was supported by the U.S. National Institute of Mental Health and the South African Medical Research Council (SAMRC) [#1R01 MH106600]. Additional Data collection support was provided by the Mzantsi Wakho Study, funded by the Nuffield Foundation [CPF/41513]; Janssen Pharmaceutica N.V., part of the Janssen Pharmaceutical Companies of Johnson & Johnson; the Regional Inter-Agency Task Team for Children Affected by AIDS– Eastern and Southern Africa (RIATT-ESA); UNICEF Eastern and Southern Africa Office (UNICEF-ESARO); the International AIDS Society through the CIPHER grant [155-Hod; 2018/625-TOS]; Claude Leon Foundation [F08 559/C]; the Leverhulme Trust [PLP-2014–095]; the Oak Foundation [R46194/AA001]; [OFIL-20-057]/GCRF “Accelerating Violence Prevention in Africa”; the University of Oxford’s ESRC Impact Acceleration Account [K1311- KEA-004]; and the John Fell Fund [103/757; 161/033]. This content is solely the responsibility of the authors and does not necessarily represent the official views of the aforementioned funders.