Development of parallel measures to assess HIV stigma and discrimination among people living with HIV, community members and health workers in the HPTN 071 (PopART) trial in Zambia and South Africa

Abstract

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.

Association between HIV stigma and antiretroviral therapy adherence among adults living with HIV: baseline findings from the HPTN 071 (PopART) trial in Zambia and South Africa

“…Ours was a large study, and we used validated measures of HIV stigma [29] and measured a large number of characteristics providing the opportunity for a thorough assessment of potential confounding. We looked at the association between three stigma ‘domains’ on adherence to ART, giving an opportunity to identify the specific areas of stigma that had the strongest associations with ART adherence.…”

“…Those agreeing or experiencing stigma on ≥1 question were categorised as 'ever experiencing' that type of stigma [18]. Our stigma measures were aligned with standardised measures that were approved by the UNAIDS' monitoring and evaluation reference group (MERG) in 2014 [18,28,29].…”

HIV Stigma and Viral Suppression Among People Living With HIV in the Context of Universal Test and Treat: Analysis of Data From the HPTN 071 (PopART) Trial in Zambia and South Africa

“…For individual-level stigma exposures among PC-HIV+ SR , we used 4 measures reflecting experienced stigma in the community (combining 5 items), experienced stigma in health service settings (3 items), internalized stigma (3 items), and a combined measure of any type of stigma (11 items). 15 Among PC-HIV+ sub , we used 2 measures reflecting perceived stigma in the community (5 items) and perceived stigma in health service settings (2 items). Item wording is presented in Table 1 .…”

“…All measures used in the study had been previously validated, and Cronbach alpha and other measurement details for each measure are shown in Table 2, Supplemental Digital Content, http://links.lww.com/QAI/B538 . 15 …”

Discurso De Gerentes Sobre Barreiras De Acesso Ao Teste Rápido Anti-Hiv Na Atenção Primária

“…Em estudo realizado na África do Sul foi visto que os profissionais, em seu âmbito laboral, ainda vinculam o HIV à injúria social e encontram uma maneira de se desresponsabilizar do usuário com escopo na testagem e medicalização, não estando familiarizados com o acolhimento holístico desse indivíduo (23) .…”