“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

Abstract

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.

Patient and stakeholder perspectives on impacts of the COVID-19 pandemic on HIV and mental health care delivery in South Africa

“…It is also possible that participants in the current study were attuned to the importance of privacy because they also had mental health and substance use problems. These are stigmatized conditions globally and within South Africa, 22 , 30 , 31 for which treatment requires sharing private information. More broadly, despite the prevalence of HIV and the widespread availability of HIV services in South Africa, stigma towards HIV still exists.…”

“…21 Setting This is a sub-analysis of 70 interviews conducted as part of two studies to develop interventions to reduce provider stigma towards mental health and/or substance use within HIV care. 22 Given that the pandemic started partway through data collection, additional questions were added to the final 29 interviews. Approval for these studies was provided by the South African Medical Research Council (SAMRC) Human Research Ethics Committee (HREC; EC046 and EC039).…”

Self‐reported alcohol use versus phosphatidylethanol in behavioral trials: A study of people living with HIV in Tshwane, South Africa

“…Age and being in the intervention arm, however, were not found to be significantly related to underreporting. Sex differences could possibly occur because drinking among women is subject to more societal and health worker stigma (Anvari et al, 2022;Sorsdahl et al, 2012), and therefore, women might be more likely to underreport their drinking and associated negative consequences as compared to males, or they may have more desire to please the study staff by reporting low alcohol use.…”

“…However, a potential challenge with self‐report measures of alcohol consumption is the accuracy of recall. In addition, people may underreport their drinking if they anticipate stigmatizing responses from their health providers or if they are in settings where there is societal stigma toward drinking (Magidson et al, 2022 ; Regenauer et al, 2022 ). Over‐report, on the contrary, is possible in settings in which there is stigma toward abstinence (Lancaster et al, 2020 ), and by persons wishing to engage in research for which they are not eligible (Devine et al, 2013 ).…”

Validation of a brief screener for broad-spectrum mental and substance-use disorders in South Africa

“…Hazardous alcohol and drug use are stigmatized behaviors (Sorsdahl and Stein, 2010 ; Sorsdahl et al, 2012 ; Van Boekel et al, 2013 ; Zewdu et al, 2019 ; Regenauer et al, 2020 ; Magidson et al, 2022 ), potentially due to low mental health literacy and criminalization. As such, it is possible that stigma reduced disclosure of alcohol and substance use, as has been documented elsewhere in the region (Hahn et al, 2016 ).…”