“It’s all about asking from those who have walked the path”: Patient and stakeholder perspectives on how peers may shift substance use stigma in HIV care in South Africa

BACKGROUND: South Africa has the highest number of people with HIV (PWH) globally and a significant burden of co-occurring substance use disorder (SUD). Health care worker (HCW) stigma towards SUD is a key barrier to HIV care engagement among PWH with SUD. Support from peers—individuals with lived experience of SUD—may be a promising solution for addressing SUD stigma, while also improving engagement in HIV care. We evaluated the perceived acceptability of integrating a peer role into community-based HIV care teams as a strategy to address SUD stigma at multiple levels and improve patient engagement in HIV care. METHODS: Patients and stakeholders (N = 40) were recruited from publicly-funded HIV and SUD organizations in Cape Town, South Africa. We conducted a quantitative assessment of stigma among stakeholders using an adapted Social Distance Scale (SDS) and patient perceptions of working with a peer, as well as semi-structured interviews focused on experiences of SUD stigma, acceptability of a peer model integrated into community-based HIV care, and potential peer roles. RESULTS: On the SDS, 75% of stakeholders had high stigma towards a patient with SUD, yet 90% had low stigma when in recovery for at least 2 years. All patients endorsed feeling comfortable talking to someone in recovery and wanting them on their HIV care team. Three main themes emerged from the qualitative data: (1) patient-reported experiences of enacted SUD and HIV stigmas were common and impacted HIV care engagement; (2) both patients and stakeholders considered a peer model highly acceptable for integration into HIV care to support engagement and address SUD stigma; and (3) patients and stakeholders identified both individual-level and systems-level roles for peers, how peers could work alongside other providers to improve patient care, and key characteristics that peers would need to be successful in these roles. CONCLUSIONS: Findings from this formative work point to the promise of a peer model for reducing SUD stigma among patients and HCWs within community-based HIV care teams in SA. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13722-022-00330-5.