“I Didn’t Reveal My ART Status Because I Didn’t Have Money to Fetch the Transfer Letter”– Understanding Lack of Treatment Disclosure at Presentation to Care in South Africa: A Qualitative Study

We explored why people may not reveal their antiretroviral therapy (ART) status when presenting for HIV care, and how a linked electronic system may help address this phenomenon. Data were collected from March to October 2023 from people who presented to clinics for an HIV test in KwaZulu-Natal, South Africa but found to be on ART, as well from staff at those clinics. Themes drawn from the Andersen's health service utilization framework and the domains of a HIV self-management framework were used to guide the analysis. Twenty five people participated in the interviews (18 individuals on ART and seven clinic staff). People did not reveal ART use due to fear of being reprimanded by clinic staff for interrupting treatment or missing clinic visits, with the main reason being administrative challenges, such as requiring a transfer letter to be allowed to access treatment at a new clinic. Some felt ashamed about actions such as buying ART from the black market due to challenges finding treatment. Others wished to present to new clinics because of employment changes, overcrowding in present clinics, missing clinic visits and experiencing stigma. Participants supported the use of a linked electronic system because all medical records would be accessible to health workers in all facilities. People in HIV care in our study demonstrated resilience, finding creative solutions by moving to new clinics to access ART. A linked electronic system which combines records at all health facilities in KwaZulu-Natal could enable individuals to access treatment from any clinic.