Objectives Describe the prevalence and determinants of HIV stigma in 21 communities in Zambia and South Africa. Design Analysis of baseline data from the HPTN 071 (PopART) cluster-randomised trial. HIV stigma data came from a random sample of 3859 people living with HIV. Community-level exposures reflecting HIV fears and judgements and perceptions of HIV stigma came from a random sample of community members not living with HIV (n=5088), and from health workers (n=851). Methods We calculated the prevalence of internalised stigma, and stigma experienced in the community or in a healthcare setting in the past year. We conducted risk-factor analyses using logistic regression, adjusting for clustering. Results Internalised stigma (868/3859, prevalence 22.5%) was not associated with sociodemographic characteristics but was less common among those with a longer period since diagnosis (p=0.043). Stigma experienced in the community (853/3859, 22.1%) was more common among women (p=0.016), older (p=0.011) and unmarried (p=0.009) individuals, those who had disclosed to others (p<0.001), and those with more lifetime sexual partners (p<0.001). Stigma experienced in a healthcare setting (280/3859, 7.3%) was more common among women (p=0.019) and those reporting more lifetime sexual partners (p=0.001) and higher wealth (p=0.003). Experienced stigma was more common in clusters where community members perceived higher levels of stigma, but was not associated with the beliefs of community members or health workers. Conclusions HIV stigma remains unacceptably high in South Africa and Zambia and may act as barrier to HIV prevention and treatment. Further research is needed to understand its determinants.
Introduction Integrating standardized measures of HIV stigma and discrimination into research studies of emerging HIV prevention approaches could enhance uptake and retention of these approaches, and care and treatment for people living with HIV (PLHIV), by informing stigma mitigation strategies. We sought to develop a succinct set of measures to capture key domains of stigma for use in research on HIV prevention technologies. Methods From 2013 to 2015, we collected baseline data on HIV stigma from three populations (PLHIV (N = 4053), community members (N = 5782) and health workers (N = 1560)) in 21 study communities in South Africa and Zambia participating in the HPTN 071 (PopART) cluster‐randomized trial. Forty questions were adapted from a harmonized set of measures developed in a consultative, global process. Informed by theory and factor analysis, we developed seven scales, with values ranging from 0 to 3, based on a 4‐point agreement Likert, and calculated means to assess different aspects of stigma. Higher means reflected more stigma. We developed two measures capturing percentages of PLHIV who reported experiencing any stigma in communities or healthcare settings in the past 12 months. We validated our measures by examining reliability using Cronbach's alpha and comparing the distribution of responses across characteristics previously associated with HIV stigma. Results Thirty‐five questions ultimately contributed to seven scales and two experience measures. All scales demonstrated acceptable to very good internal consistency. Among PLHIV, a scale captured internalized stigma, and experience measures demonstrated that 22.0% of PLHIV experienced stigma in the community and 7.1% in healthcare settings. Three scales for community members assessed fear and judgement, perceived stigma in the community and perceived stigma in healthcare settings. Similarly, health worker scales assessed fear and judgement, perceived stigma in the community and perceived co‐worker stigma in healthcare settings. A higher proportion of community members and health workers reported perceived stigma than the proportion of PLHIV who reported experiences of stigma. Conclusions We developed novel, valid measures that allowed for triangulation of HIV stigma across three populations in a large‐scale study. Such comparisons will illuminate how stigma influences and is influenced by programmatic changes to HIV service delivery over time.
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