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

Anne L Stangl, Pamela Lilleston, Hlengani Mathema, Triantafyllos Pliakas, Shari Krishnaratne, Kirsty Sievwright, Nomhle Bell-Mandla, Redwaan Vermaak, Tila Mainga, Mara Steinhaus, Deborah Donnell, Ab Schaap, Peter Bock, Helen Ayles, Richard Hayes, Graeme Hoddinott, Virginia Bond, James R Hargreaves, HPTN 071 (PopART) Study Team, Anne L Stangl, Pamela Lilleston, Hlengani Mathema, Triantafyllos Pliakas, Shari Krishnaratne, Kirsty Sievwright, Nomhle Bell-Mandla, Redwaan Vermaak, Tila Mainga, Mara Steinhaus, Deborah Donnell, Ab Schaap, Peter Bock, Helen Ayles, Richard Hayes, Graeme Hoddinott, Virginia Bond, James R Hargreaves, HPTN 071 (PopART) Study Team

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.

Trial registration: ClinicalTrials.gov NCT01900977.

Keywords: HIV; Sub-Saharan Africa; antiretroviral therapy; discrimination; measurement; stigma.

© 2019 The Authors. Journal of the International AIDS Society published by John Wiley & Sons Ltd on behalf of the International AIDS Society.

Figures

Figure 1
Figure 1
a, Responses to, and sources of HIV stigma items asked of people living with HIV. Agree or strongly agree for internalised stigma and experienced stigma at least once in the community or healthcare settings highlighted in bold. (1) Often: 94 (2.4%); (2) Often: 35 (0.9%); (3) Once: 70 (1.8%), A few times: 86 (2.2%), Often: 22 (0.6%); (4) Once: 81 (2.0%), A few times: 49 (1.2%), Often: 17 (0.4%); (5) Often: 43 (1.1%); (6) Once: 56 (1.4%), A few times: 51 (1.3%), Often: 13 (0.3%); (7) Once: 102 (2.6%), A few times: 67 (1.7%), Often: 13 (0.3%); (8) Once: 91 (2.3%), A few times: 64 (1.6%), Often: 9 (0.2%). aAdapted from new item included in the 2015 to 2020 DHS Standard Survey instrument (https://dhsprogram.com/pubs/pdf/DHSQ7/DHS7-Womans-QRE-EN-07Jun2017-DHSQ7.pdf); bPLHIV Stigma Index survey (http://www.stigmaindex.org/about-index); cUSAID stigma measures (https://www.icrw.org/wp-content/uploads/2016/10/Working-Report-Measuring-HIV-Stigma-Results-of-a-Field-Test-in-Tanzania.pdf). b, Responses to, and sources of, HIV stigma items asked of community members. Agree or strongly agree highlighted in bold. aUSAID stigma measures (https://www.icrw.org/wp-content/uploads/2016/10/Working-Report-Measuring-HIV-Stigma-Results-of-a-Field-Test-in-Tanzania.pdf); b2015 to 2020 DHS Standard Survey Instrument (https://dhsprogram.com/pubs/pdf/DHSQ7/DHS7-Womans-QRE-EN-07Jun2017-DHSQ7.pdf); cAdapted from new item included in the 2015 to 2020 DHS Standard Survey instrument; dNew item. c, Responses to, and sources of, HIV stigma items asked of health workers. Agree or strongly agree highlighted in bold. (1) Agree: 41 (3.0%), Strongly Agree: 31 (2.3%); (2) Strongly Agree: 37 (2.6%); (3) Strongly Agree: 40 (2.8%). aUSAID stigma measures (https://www.icrw.org/wp-content/uploads/2016/10/Working-Report-Measuring-HIV-Stigma-Results-of-a-Field-Test-in-Tanzania.pdf); b2015 to 2020 DHS Standard Survey Instrument (https://dhsprogram.com/pubs/pdf/DHSQ7/DHS7-Womans-QRE-EN-07Jun2017-DHSQ7.pdf); cNyblade et al. A brief, standardized tool for measuring HIV‐related stigma among health facility staff: results of field testing in China, Dominica, Egypt, Kenya, Puerto Rico and St. Christopher and Nevis. 2013, J Int AIDS Soc; dNew item; eAdapted from new item included in the 2015 to 2020 DHS Standard Survey instrument (https://dhsprogram.com/pubs/pdf/DHSQ7/DHS7-Womans-QRE-EN-07Jun2017-DHSQ7.pdf)

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