Objective To explore barriers and facilitators to accessing postdiagnosis HIV care in five sub-Saharan African countries.
Methods In-depth interviews were conducted with 77 people living with HIV (PLHIV) in preantiretroviral therapy care or not-yet-in care and 46 healthcare workers. Participants were purposely selected from health and demographic surveillance sites in Karonga (Malawi), Manicaland (Zimbabwe), uMkhanyakude (South Africa), Kisesa (Tanzania) and Rakai and Kyamulibwa (Uganda). Thematic content analysis was conducted, guided by the constructs of affordability, availability and acceptability of care.-
Results Affordability: Transport and treatment costs were a barrier to HIV care, although some participants travelled to distant clinics to avoid being seen by people who knew them or for specific services. Broken equipment and drug stock-outs in local clinics could also necessitate travel to other facilities.
Availability: Some facilities did not offer full HIV care, or only offered all services intermittently. PLHIV who frequently travelled complained that care was seldom available to them in places they visited.
Acceptability: Severe pain or sickness was a key driver for accessing postdiagnosis care, whereas asymptomatic PLHIV often delayed care-seeking. A belief in witchcraft was a deterrent to accessing clinical care following diagnosis. Changing antiretroviral therapy guidelines generated uncertainty among PLHIV about when to start treatment and delayed postdiagnosis care. PLHIV reported that healthcare workers’ knowledge, attitudes and behaviours, and their ability to impart health education, also influenced whether they accessed HIV care.
Conclusion Despite efforts to decentralise services over the past decade, many barriers to accessing HIV care persist. There is a need to increase sustained access to care for PLHIV not yet on treatment, with initiatives that encompass biomedical aspects of care alongside considerations for individual and collective challenges they faced. A failure to do so may undermine efforts to achieve universal access to antiretroviral therapy.
- Social Science
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Contributors AW conceived the study; AW, JR, OB, DB, JS, JW, MM, RS, SP and EM designed the study protocol; AW, JR, OB, DB, JS, JW, MM, RS and EM prepared the study tools; DB, RS, JW and MM conducted the data collection; DB, RS, JW, MM, JS, AW, JR, OB, EM and MS conducted the analysis; DB prepared the first draft of this manuscript; DB and JS wrote the final version of the manuscript. RS, JW, MM, AW, JR, OB, EM and MS made significant contributions to the manuscript and revised it for intellectual content. All authors read and approved the final manuscript. AW, JR, OB, DB, JS, JW, MM, RS, SP and EM are the guarantors of the paper.
Funding The Bottlenecks Study was funded by the Bill and Melinda GatesFoundation (OPP1082114). This paper was also made possible with the support ofThe Wellcome Trust (085477/Z/08/Z). Research [undertaken in Kisesa and] reportedin this publication was supported by the National Institute Of Allergy And InfectiousDiseases (NIAID), Eunice Kennedy Shriver National Institute Of Child Health &Human Development (NICHD), National Institute On Drug Abuse (NIDA), NationalCancer Institute (NCI), and the National Institute of Mental Health (NIMH), inaccordance with the regulatory requirements of the National Institutes of Healthunder Award Number U01AI069911 East Africa IeDEA Consortium. The contentis solely the responsibility of the authors and does not necessarily represent theofficial views of the National Institutes of Health. AW is funded by a PopulationHealth Scientist award, jointly funded by the UK Medical Research Council (MRC)and the UK Department for International Development (DFID) under the MRC/DFIDConcordat agreement and is also part of the EDCTP2 programme supported by theEuropean Union.
Competing interests None declared.
Patient consent Qualitative research study - informed consent was obtained from participants.
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 is MR/53/100/370 (Kisesa); Uganda National Council for Science and technology (UNCST)- HS1857 and Office of the president ADM 154/212/01(Kyamulibwa and Rakai); Medical Research Council of Zimbabwe MRCZ/A/1990 (Manicaland) and Biomedical research and Ethics committee UKZN/BE338/15 (uMkhanyakude). Informed and written consent was obtained from all participants.
Provenance and peer review Commissioned; externally peer reviewed.
Data sharing statement Access to data may be provided on request to Dr Alison Wringe (firstname.lastname@example.org).
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