Objectives Stigma remains pervasive for people living with HIV (PLHIV) in sub-Saharan Africa, undermining care engagement. Using everyday, biographical and epochal temporalities, we explored the manifestation of stigma at different stages of the HIV care continuum in seven health and demographic surveillance sites in Eastern and Southern Africa.
Methods Between 2015 and 2016, we conducted qualitative in-depth interviews with 264 PLHIV, 54 health providers and 48 family members of people who had died from HIV. Topic guides explored experiences of HIV testing, care and treatment services. Data were analysed thematically, aided by NVivo 10.
Results In everyday time across these communities, stigma was evident in the presence of gossiping and the relative absence of supportive interpersonal discourse, which fuelled judicious disclosure. This was especially disruptive at testing, counselling and early antiretroviral therapy adherence stages of care. Biographical time framed everyday stigma events, highlighting the dilemma of disclosure in relation to sexual relationship norms, as well as the interfacing of age and healthcare continuum points. Epochal patriarchal relations gave a structural context to everyday and biographical stigma dynamics. Historical shifts to social acceptance of PLHIV within these communities, while positive, were complicated by stigma in everyday life and in respect of biographical goals like having a family. Moreover, low community-level resistance to HIV-related stigma jeopardised stigma reduction strategies.
Conclusions Despite improvements to HIV care services, stigma remains pervasive across the HIV care continuum in these sites. Context-specific interventions are needed to address stigma and discrimination of PLHIV within the community and in health services, and greater reflection is required to ensure policies aiming to expand HIV treatment do not exacerbate stigma and result in negative HIV outcomes.
- QUALITATIVE RESEARCH
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Contributors All authors contributed to the development of The Bottlenecks Study protocol under the leadership of AW and OB. JW, WD, DB, KO, MS, JR and MM supervised the data collection by trained research assistants and prepared detailed site reports. OB conducted the analysis and prepared the first draft of this manuscript. JW, WD, DB, KO, MS, JR, MM and AW made significant contributions to the manuscript and revised it for intellectual content. All authors have read and commented on the manuscript. All authors have approved the final manuscript, and act as guarantors of the paper.
Funding The Bottlenecks Study was funded by the Bill and Melinda Gates Foundation (OPP1082114). This paper was also made possible with the support of The Wellcome Trust (085477/Z/08/Z and 084401/Z/07/Z). Research undertaken in Kisesa reported in this publication was supported by the National Institute of Allergy and Infectious Diseases, Eunice Kennedy Shriver National Institute of Child Health & Human Development, National Institute on Drug Abuse, National Cancer Institute and the National Institute of Mental Health, in accordance with the regulatory requirements of the National Institutes of Health under Award Number U01AI069911 East Africa IeDEA Consortium. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. AW is funded by a Population Health Scientist award, jointly funded by the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement and is also part of the EDCTP2 programme supported by the European Union.
Competing interests None declared.
Ethics approval Ethical approval was granted by the London School of Hygiene and Tropical Medicine and the relevant ethics boards at each of the study settings. These were: Malawi National Health Sciences Research Committee #15/5/1427 (Karonga); Medical Research Coordination Committee––MR/53/100/370 (Kisesa); Uganda National Council for Science and Technology––HS1857 (Kyamulibwa) and Office of the President––ADM154/212/01 (Rakai); Kenya Medical Research Institute (KEMRI) Scientific and Ethics Review Unit (SERU)––KEMRI/SERU/CGHR/018/3115 (Kisumu); Medical Research Council of Zimbabwe––MRCZ/A/1990; Biomedical Research and Ethics Committee, South Africa, UKZN/BE338/15. Informed and written consent was obtained from all participants.
Provenance and peer review Commissioned; externally peer reviewed.
Data sharing statement Access to the data may be provided on request from Dr Alison Wringe (Alison.Wringe@lshtm.ac.uk).
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