Multiple forms of discrimination and internalized stigma compromise retention in HIV care among adolescents: findings from a South African cohort

Abstract

Introduction Efficacious antiretroviral treatment (ART) enables people to live long and healthy lives with HIV but young people are dying from AIDS‐related causes more than ever before. Qualitative evidence suggest that various forms of HIV‐related discrimination and resulting shame act as profound barriers to young people’s engagement with HIV services. However, the impact of these risks on adolescent retention in HIV care has not been quantified. This study has two aims: (1) to examine whether and how different types of discrimination compromise retention in care among adolescents living with HIV in South Africa; and (2) to test whether internalized stigma mediates these relationships. Methods Between 2014 and 2017, adolescents living with HIV (aged 10 to 19) from 53 health facilities in the Eastern Cape, South Africa, were interviewed at baseline (n = 1059) and 18‐month follow‐up (n = 979, 92.4%), with responses linked to medical records. Data were analysed through multiple regression and mediation models. Results About 37.9% of adolescents reported full retention in care over the 2‐year period, which was associated with reduced odds of viral failure (OR: 0.371; 95% CI: .224, .614). At baseline, 6.9% of adolescents reported discrimination due to their HIV status; 14.9% reported discrimination due to HIV in their families and 19.1% reported discrimination in healthcare settings. Healthcare discrimination was associated with reduced retention in care both directly (effect: −0.120; CI: −0.190, −0.049) and indirectly through heightened internalized stigma (effect: 0.329; 95% CI: 0.129, 0.531). Discrimination due to family HIV was associated with reduced retention in care both directly (effect: −0.074, CI: −0.146, −0.002) and indirectly through heightened internalized stigma (effect: 0.816, CI: 0.494, 1.140). Discrimination due to adolescent HIV was associated with reduced retention in care only indirectly, through increased internalized stigma (effect: 0.408; CI: 0.102, 0.715). Conclusions Less than half of adolescents reported 2‐year retention in HIV care. Multiple forms of discrimination and the resultant internalized stigma contributed to this problem. More intervention research is urgently needed to design and test adolescent‐centred interventions so that young people living with HIV can live long and healthy lives in the era of efficacious anti‐retroviral treatment.

Models of service delivery for optimizing a patient’s first six months on antiretroviral therapy for HIV: an applied research agenda

“…In Zimbabwe, retention in care improved significantly between 2010 and 2015 except for patients in their first six months 10 . Beyond the impact on individual morbidity and mortality, early losses from care are associated with internalized stigma, leading to social isolation, fear of disclosure, and discrimination, which potentially compound the inherent challenges in returning to care 11 – 13 .…”

The Intergenerational Impact of a Slow Pandemic: HIV and Children

“…Such approaches hold out hope, but the challenges are great. For example, in one recent a cohort study of approximately 1,000 adolescents in South Africa, retention on ART was only 38% (Pantelic, Casale, Cluver, Toska, & Moshabela, 2020). In a systematic review of interventions to improve adolescent ART adherence few interventions were found to be effective (Reif et al, 2020).…”

The Mediating Role of Internalized Stigma and Shame on the Relationship between COVID-19 Related Discrimination and Mental Health Outcomes among Back-to-School Students in Wuhan

“…Moreover, individuals with travel experience in the epicenter were affected by internalized stigma [ 23 ], and that could be psychologically damaging for individuals affected by COVID-19, since high levels of internalized stigma might be associated with lower levels of self-esteem and increased depression [ 10 , 24 ]. In addition, previous studies have shown the association between multifaceted discrimination and retention cares in HIV-positive young adolescents; this process was mediated by internalized stigma [ 25 ]. Although the repercussion of internalized stigma has been widely revealed, the psychological process was still unclear in the context of COVID-19.…”

“…Concerning infectious disease-perceived discrimination, individuals may exhibit feelings of shame and stigmatization synchronously. Moreover, shame has been shown to mediate the negative mental and physical health consequences of stigmatization, both shame and stigma are directly related to mental health problems [ 25 , 28 , 29 ]. However, they probably have different manifestations.…”