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Editorial

The People Living with HIV Stigma Index 2.0: generating critical evidence for change worldwide

Friedland, Barbara A.a; Gottert, Annb; Hows, Julianc; Baral, Stefan D.d,e; Sprague, Laurelf; Nyblade, Laurag; McClair, Tracy L.b; Anam, Florenceh; Geibel, Scottb; Kentutsi, Stellai; Tamoufe, Ubaldj; Diof, Daoudak; Amenyeiwe, Ugol; Mallouris, Christoforosm; Pulerwitz, Julieb; PLHIV Stigma Index 2.0 Study Group

Author Information
doi: 10.1097/QAD.0000000000002602
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Abstract

Introduction

Stigma has shaped the context within which people living with HIV (PLHIV) have had to navigate their lives since the earliest days of the AIDS pandemic [1]. Despite significant biomedical advances that have transformed HIV from a terminal illness to a manageable condition, stigma continues to impact the quality of life and health outcomes of PLHIV and is an impediment to ending the epidemic [2–15]. Gay men and other MSM, sex workers, people whose gender identity differs from what was assigned at birth, people who use drugs, and other marginalized populations–often collectively referred to as ‘key populations’–face additional stigmas that increase risk of HIV acquisition and transmission, limit access to treatment and care, and worsen health outcomes [16–20].

Tackling stigma requires empirical evidence on the types, extent, and impact of stigma on the lives of PLHIV. To facilitate measuring and developing interventions to address HIV-related stigma, the PLHIV Stigma Index (Stigma Index) was developed in 2008 by the Global Network of PLHIV (GNP+), the International Community of Women Living with HIV (ICW), International Planned Parenthood Foundation, and UNAIDS. The Stigma Index is the most widely used survey measuring stigma and discrimination experienced by PLHIV from their perspective [21]. Although the term ‘index’ is often used to describe a compound measure that aggregates multiple indicators, in this case, it describes a survey with nearly 100 questions assessing different types of stigma and related phenomena. The Stigma Index operationalizes the GIPA principle (greater involvement of people living with HIV and AIDS) [22]; PLHIV lead the research, including data collection and dissemination. Since its launch, more than 2000 PLHIV have been trained as interviewers and over 100 000 PLHIV from more than 100 countries have been interviewed in 55 languages [21]. Data generated from the Stigma Index have informed advocacy efforts, public campaigns against discrimination, policies guiding healthcare provision for PLHIV, including sexual and reproductive health options, and challenged discriminatory provisions within laws [23].

In 2015, UNAIDS, ICW, and GNP+ – the International Stigma Index Partnership (ISIP) – spearheaded a process to update the Stigma Index to better understand the continued barriers to HIV testing and treatment, particularly in response to global ‘treat all’ guidelines [24] and UNAIDS targets [25], and to systematically measure the impact of intersecting stigmas on key populations living with HIV, which had been limited previously [26]. Project SOAR, a research consortium led by the Population Council, guided the Stigma Index update in collaboration with the ISIP and funded by the United States Agency for International Development (USAID). The current article describes the process of updating the Stigma Index, presents key features of the resulting ‘Stigma Index 2.0,’ and summarizes the results of testing the updated survey in three countries.

Methods

Overview of Stigma Index update process

Project SOAR established a Working Group with representatives from the ISIP, USAID, and stigma research experts that outlined an iterative, transparent process to incorporate as many perspectives as possible (Fig. 1). Guided by the ISIP, Project SOAR reviewed 13 Stigma Index country reports [27–29], four regional reports [30–33], and five related documents [34–38]; mapped other tools measuring HIV [39–49] and key population [50–59] stigma; and interviewed 15 key informants involved in implementing the Stigma Index. A consultation was convened (April 2016) with a diverse group PLHIV, including key populations, donors, bilateral organizations, and researchers who recommended capturing both HIV-related and key population-related stigma, measuring key population-related stigma by identity (i.e., gay or MSM) and by behavior (i.e., has sex with other men) and separating gender identity from sexual orientation in questions and responses. Stakeholders also suggested incorporating previously validated scales, where possible, and adding a resilience measure to capture positive experiences alongside stigma and discrimination. Table 1 outlines the sections and content areas of the Stigma Index 2.0, highlighting notable changes to the original survey including: a widely-used two-part gender identity question [56]; a new section containing previously-validated key population-related stigma items [57,58]; an expanded healthcare section [59]; a refined set of reproductive health questions; validated scales to assess anxiety and depression [60] and internalized stigma [41]; and a new PLHIV Resilience Scale [61]. A draft of the updated questionnaire was pretested by 60 PLHIV at the 2016 AIDS Conference (Durban, South Africa) and reviewed by select stakeholders who had attended the consultation. Feedback from the workshops and stakeholder review informed the version of the Stigma Index 2.0 questionnaire that was formally tested in three studies (described below). After evaluating the study data and retaining most of the piloted questions, the Working Group finalized the Stigma Index 2.0, which has been available since 2018.

Fig. 1
Fig. 1:
Stigma Index Update Process Outlined by Working Group (WG).
Table 1
Table 1:
Stigma Index 2.0 sections, content areas, and key changes made during the update process.

Testing the Stigma Index 2.0 in Cameroon, Senegal, and Uganda

Study design and population

Three cross-sectional studies were implemented by: Metabiota and Réseau Cameronais des Associations de Persones Vivant avec le VIH (RéCAP+) in Douala and Yaoundé, Cameroon; Enda Santé and Réseau National des Associations de PVVIH du Sénégal (RNP+) in Dakar and Ziguinchor, Senegal; and the National Forum of People Living with HIV Networks in Uganda (NAFOPHANU) in greater Kampala, Uganda. These three countries were selected for their varying HIV epidemiology (incidence, prevalence, populations affected) and previous Stigma Index experience [28,29,62]. The Population Council, RTI International, and Johns Hopkins University provided technical support to the country teams.

Eligible individuals were aged 18 years or older, had lived in the study area for at least 3 months, had known their HIV positive status for at least 1 year, and spoke one of the local languages: French or English (Cameroon); Wolof, Joola, Mandinka, or French (Senegal); and Luganda or English (Uganda). A diverse group of PLHIV were recruited using two nonprobabilistic, purposive sampling methods – venue-based and snowball. Purposive sampling was beneficial for reaching specific key populations and minimizing inadvertent disclosure of HIV status or key population membership (by recruiting at venues or via peers to whom respondents had already disclosed their status). Probability-based sampling was not feasible due to the challenges and costs of defining a complete sampling frame of all PLHIV in the study areas. A sample size of 400 was chosen to detect sufficient variability in responses to survey questions, including between sub-groups of interest (such as gender identity and key population status).

For venue-based sampling, PLHIV networks, community-based organizations (CBOs) serving key populations, and antiretroviral therapy (ART) clinics linked potentially interested PLHIV with data collectors. For snowball sampling, respondents who completed the survey were given coupons to invite up to five peers as a way to recruit PLHIV who may not have been connected to networks or treatment centers.

Data collection

Before data collection began, community meetings were held to engage PLHIV networks, CBOs, and HIV service providers in recruitment plans and selection of interview venues. Interviewers were from PLHIV networks or CBOs and represented a mix of genders and populations. All interviewers, many with prior Stigma Index experience, were trained on research ethics; data collection techniques; gender, sexuality; and other sensitive topics; and working with PLHIV and key populations.

Quantitative. The Stigma Index 2.0 questionnaire was implemented on tablet computers (Cameroon, Senegal) or smart phones (Uganda) using Open Data Kit (Creative Commons, Mountain View, CA, USA). A ‘side-by-side’ process, in which the interviewer and respondent sit next to versus across from each other, was used to create a supportive environment for interviewees. Data were entered in real-time by interviewers, transmitted daily to a server in each country, and uploaded weekly to analysts. The questionnaire was translated into the local languages and pretested before use.

Qualitative. In Uganda, cognitive interviews were implemented among 20 PLHIV who had not taken the survey to ensure questions and response options were understood by respondents as intended [63,64]. Cognitive interview respondents were asked to restate each question in their own words, if any questions were difficult to understand and, if so, to suggest alternative wording for questions or response options. One-on-one interviews were conducted in Senegal and Cameroon (n = 20 per country) to gather feedback on several specific questions that the Working Group revised based on preliminary analysis.

In Uganda only, focus group discussions (FGDs) were conducted to explore how well the questionnaire reflected the experiences of PLHIV, and particularly, key populations living with HIV. Six FGDs with respondents who had completed the survey, stratified by population group (e.g., cisgender men, MSM, sex workers, heterosexual cisgender women) and two FGDs with PLHIV interviewers were conducted and audio recorded.

Data analysis

Quantitative data were analyzed separately by country using Stata 15.0 (StataCorp, College Station, Texas, USA). Descriptive statistics (frequencies/means; measures of dispersion; extent of missing data) were used to summarize all data, by country, and, for relevant questions, by key population subgroup. Questions were considered to perform adequately and not require revision if, in each country, they had minimal missing data due to nonresponse (<5%) and demonstrated adequate variability (categorical variables with <95% of responses in any one category; continuous variables not highly skewed). To gauge performance of the three multi-item psychometric scales [41,60,61], internal consistency reliability was assessed via Cronbach's alpha. Construct validity of scales was assessed using confirmatory factor analysis (and exploratory factor analysis for the new PLHIV Resilience Scale [61]). Cognitive interview and FGD transcripts were transcribed and translated into English and analyzed using content analysis [65].

Ethics

All respondents provided informed consent before taking the survey or being interviewed, and were reimbursed for transportation, but not otherwise compensated. The protocols, questionnaire and interview guides were approved by the Institutional Review Boards of the Johns Hopkins Bloomberg School of Public Health (Baltimore, Maryland, USA), the Population Council (New York, New York, USA), and by the Comité National D’Ethique de la Recherche pour la Santé Humaine (Cameroon), the Comité National Ethique pour la Recherche en Santé (Senegal), and the Mildmay Uganda Research Ethics Committee (Uganda).

Results

Between March and October 2017, 1207 PLHIV completed the survey, of whom 1158 (n = 377, Cameroon; n = 390, Senegal; n = 391, Uganda) were eligible and included in analyses (knew HIV status ≥1 year). Selected descriptive results from each survey section are presented below, followed by a summary of the survey's performance, to provide a sense of the content and quality of data generated by the Stigma Index 2.0.

Descriptive results

About you (demographics, section A)

On average, participants were 36–42 years old and had known their HIV status for about 7 years (Table 2). Over half of respondents were cisgender women, and more than one-third were key populations by identity (e.g., gay) or practice (e.g., has sex with other men). Approximately 5% identified as transgender/a different gender from their sex assigned at birth. Relationship status, employment, and education varied within and between countries.

Table 2
Table 2:
Participant characteristics by country (N = 1158).

Disclosure (section B)

Most respondents said at least one person knew their HIV-positive status (other than a healthcare provider), and about half felt disclosure had become easier over time. A quarter of respondents in Cameroon, and less than 10% in Senegal, and Uganda reported that their status was ever disclosed without their consent (Table 2).

Your experience of stigma and discrimination (due to HIV, section C and key population membership, section G)

HIV-related stigma was experienced by 54, 13, and 37% of all respondents from Cameroon, Senegal, and Uganda, respectively (Table 3 ). In Cameroon and Senegal, key populations experienced higher rates of HIV-related stigma than non-key populations (62 versus 49% and 20 versus 10%, respectively). The most common experiences across countries and population groups were verbal harassment and family members making discriminatory remarks or gossiping. Blackmail and physical harassment were also common in Cameroon and Uganda.

Table 3
Table 3:
Stigma and discrimination experienced by respondents by country and key population status, past 12 months.
Table 3 (Continued)
Table 3 (Continued):
Stigma and discrimination experienced by respondents by country and key population status, past 12 months.

The new section on key population-related stigma indicated that 90, 43, and 40% of MSM from Cameroon, Senegal, and Uganda, respectively, experienced stigma because they had had sex with other men (Table 3 ). Similarly, 94% of transgender women in Cameroon, 25% in Senegal, and 52% in Uganda were stigmatized due to their gender identity. Verbal harassment was the most common key population-related stigma experienced, although blackmail and physical harassment were also prevalent. Stigma also affected key population's healthcare-seeking behaviors: up to 45% had been afraid to seek services and up to 41% had avoided services because of fears someone would discover their key population identity.

Internalized stigma and resilience (section D)

Average internalized stigma scores (scale range 0–6; higher = more internalized stigma) [41] were 3.3, 2.7, and 2.1 in Cameroon, Senegal, and Uganda, respectively (Table 2). The new PLHIV Resilience Scale [61] indicated substantial resilience, as well as variation between individuals, in terms of the negative, neutral, or positive effect of HIV status on attainment of needs, such as the ability to cope with stress, find love, or achieve goals. Overall resilience (scale range −10–+10; higher = more resilience) was −2.7 in Cameroon, 0.42 in Senegal, and 0.69 in Uganda.

Interactions with healthcare services (section E)

One-quarter to one-third of respondents hesitated to get tested due to fears of how others would respond if they tested HIV-positive (Table 4). Most respondents had tested for HIV voluntarily, although approximately 10% felt pressured by others to test. Lack of consent was reported by less than 3% of respondents. A majority received their regular HIV care from government or community-based nongovernmental organization-run clinics. Almost all were currently on ART, nearly two-thirds of whom reported starting treatment within 6 months of diagnosis. Viral load suppression was reported by 64, 43, and 62% of respondents from Cameroon, Senegal, and Uganda, respectively; 3–14% had been tested and were not virally suppressed, almost 20% had not been tested, and up to 35% did not know if they had been tested or what a viral load test was. Finally, up to one-third had missed an ART dose at least once in the last 12 months due to fear of inadvertent disclosure.

Table 4
Table 4:
HIV care and treatment by country (n = 1158).

Most respondents rated their overall health as good or fair (versus poor), although up to half had been diagnosed with another condition (other than HIV) in the last 12 months. Average depression scores per the depression scale [60] (scale range 1–4; higher = more depression) were 2.3, 1.8, and 1.5 in Cameroon, Senegal, and Uganda, respectively.

Stigma in HIV-healthcare settings in the last 12 months was experienced by 43, 13, and 38% of respondents in Cameroon, Senegal, and Uganda, respectively (Table 3 ). Up to one-quarter of respondents had been advised not to have sex, talked badly or gossiped about, or experienced verbal abuse. Key populations were more likely to have experienced stigma within healthcare settings than non-key populations in Cameroon and Senegal, whereas in Uganda, the reverse was true. Less than 2% of respondents had been advised to terminate a pregnancy due to their HIV status. More women than men (and more respondents, overall) had been advised not to have children: 7 versus 6%; Cameroon, 4 versus 1%; Senegal, and 12 versus 3%, Uganda.

Human rights and effecting change (section F)

Approximately one-third of respondents in Cameroon, half in Senegal, and one-third in Uganda were aware of laws in their countries to protect PLHIV against discrimination. A minority (13%, Cameroon; 3% Senegal; 15%, Uganda) reported being arrested or denied a visa, citizenship or residency due to their HIV status; or forced to disclose their HIV status; however, less than half of those contacted a lawyer, community organization, or PLHIV network (data not shown).

Personal experience of stigma/discrimination (section H: open-ended question)

Less than half of respondents shared specific experiences of stigma or discrimination. Experiences ranged widely from the people involved and severity of the situations. Two common themes were family disassociation and disclosure without consent.

Performance of the questionnaire

Overall, the Stigma Index 2.0 performed well. Most questions captured substantial variability in responses within each country (e.g., categorical variables had <95% in any one category; continuous variables were normally distributed/not highly skewed; and missing data were minimal). Cognitive interview respondents indicated that most questions were well understood and FGD participants said that the Stigma Index 2.0 addressed issues that were relevant to their lives. A few questions were reworded for greater clarity and some response options with very low frequency of responses (e.g., <1%) across countries were eliminated or combined with others.

The 6-item internalized stigma scale (IA-RSS), 4-item depression/anxiety scale (PHQ-4), and 10-item PLHIV Resilience Scale demonstrated generally good internal consistency reliability and construct validity. Cronbach's alphas for Cameroon, Senegal, and Uganda, respectively were: IA-RSS: 0.70, 0.65, 0.75; PHQ-4: 0.80, 0.88, 0.80; Resilience Scale: 0.81, 0.92, 0.89. Confirmatory factor analyses for the previously validated IA-RSS and PHQ-4 scales demonstrated good model fit per conventional cutoff criteria (for the IA-RSS with binary items, all three R2 were >0.74; for the PHQ-4, all root mean square error of approximation were <0.06, comparative fit index and Tucker-Lewis Index >0.98, and standardized root mean square residual < 0.02). For the new Resilience Scale, exploratory factor analyses suggested a unidimensional scale (i.e., single factor) and confirmatory factor analyses demonstrated good model fit [61].

Only the Disclosure section was revised significantly to simplify the complex matrix of questions that had been designed to capture detailed disclosure experiences with 12 distinct groups. The revised section asks if 10 individuals or groups know the respondents’ status (Yes/No) and if any of these people found out without their consent. These revisions were made after extensive discussion within the Working Group about how disclosure often occurs passively over time versus as a one-time event.

Discussion

Since its launch in 2008, the Stigma Index has been an important tool for documenting stigma and discrimination and informing interventions [21]. The Stigma Index was updated in an iterative, consultative process driven by and incorporating the views of PLHIV, in keeping with the GIPA principle. The Stigma Index 2.0 performed well in the three countries where it was tested, capturing a range of experiences among a diverse group of PLHIV. Although the Stigma Index 2.0 cannot measure causal relationships due to the cross-sectional nature of the survey, results can inform the focus of policy and interventions. And, repeating implementation of the Stigma Index 2.0 every few years (as was done in many countries for the original Stigma Index), can enable tracking of changes in stigma and related phenomena over time, including in response to stigma reduction interventions or policy changes.

A key benefit of the Stigma Index 2.0 is its ability to shed new light on the growing body of research on intersecting stigmas [66–69]. The updated questionnaire enables more precise measurement of the separate and combined burden of HIV-related and key population-related stigmas, and how these intersecting stigmas impede HIV testing and care. The high rates of stigma and discrimination against key populations in all three countries in this study reinforces the critical need to address harmful legal and policy environments that pose significant barriers to engagement in care. In another recent Stigma Index 2.0 implementation in the Dominican Republic, Yam et al.[70] found that MSM who experienced more stigma in HIV-specific services had significantly lower odds of knowing they had undetectable viral load, and that higher internalized stigma among female sex workers was significantly associated with missing a dose of ART.

A second benefit of the Stigma Index 2.0 is the expanded healthcare section, which facilitates documentation of how stigma and discrimination impact PLHIV at each point in the HIV care cascade. For example, although almost all respondents were currently taking ART, nearly one-third had missed a dose in the past year due to fear of disclosure, and less than two-thirds knew they were virally suppressed. The Stigma Index 2.0 can distinguish the differences between people who reported receiving viral load testing and having measurable viral load, not having had a viral load test in the past 12 months, or not knowing what viral load testing/viral suppression means. Each of these responses indicates different issues – problems with ART adherence/retention, viral load testing practices, or lack of patient education about their care – which require different interventions.

A third benefit is the addition of the new PLHIV Resilience Scale, which was developed and validated in the context of the Stigma Index update process [61]. Alongside assessing multiple facets of stigma, the new 10-item resilience scale can gauge this more positively framed response to living with HIV. Including this scale in the context of the diverse questions in the Stigma Index 2.0 can facilitate the development of multilevel interventions by analyzing how resilience is shaped by factors at multiple levels, as has been done by Gottert et al.[71] in this issue.

There were several limitations of the Stigma Index update process and related study designs. First, as the updated questionnaire was tested in three sub-Saharan countries, implementation in other regions and countries will be required to determine how well the Stigma Index 2.0 performs in those settings. Second, the questionnaire was not retested after the technical Working Group made changes based on results from the pilot studies in Cameroon, Senegal, and Uganda. However, feedback from respondents in Cameroon and Senegal indicated that the changes worked well, and future administrations of the Stigma Index 2.0 will provide additional insights. Finally, the sampling methods determined to be most appropriate in this setting did not include random sampling, and thus the results may not be statistically representative of the total PLHIV population in each setting.

In conclusion, the Stigma Index 2.0 is an instrument that is now more relevant to the current context of the HIV/AIDS epidemic and response. Findings from testing the Stigma Index 2.0 in three countries reinforce the continuing need for interventions, advocacy and policy change efforts to tackle stigma and discrimination, as well as careful monitoring of progress. Over time, results from implementing the Stigma Index 2.0 will provide critical information for global stakeholders to address gaps in program design and policies that support PLHIV to engage in services, adhere to ART, be virally suppressed, and have a higher quality of life. Without significant reductions in stigma and discrimination, ending the epidemic will be challenging, if not impossible.

Acknowledgements

Stigma Index Working Group: other author contributors.

Enda Santé, Dakar, Senegal: Fatou Mbacké Sy; Faculty of Medicine and Biomedical Sciences, University of Yaoundé, Yaoundé, Cameroon: Serge Clotaire Bilong, Anne Cecile Bissek, Oudou Njoya; Johns Hopkins University, Baltimore, Maryland, USA: Guy Fako, Sosthenes Ketende, Carrie Lyons, Iliassou Mfochive Njindam, Gnilane Turpin Nunez, Oluwasolape Olawore, Fan Yang; Metabiota, Yaoundé, Cameroon: Nsangou Moustapha Mohamed Moncher, Mfouapong Njatono Hassan Abil, Karen Saylors (San Francisco, California, USA); National Forum for People Living with HIV Networks in Uganda (NAFOPHANU), Kampala, Uganda: Richard Batamwita, Richard Mugumya, Proscovia Nanyanzi, Enos Sande, Stephen Sentogo, Stephen Watiti; Population Council: Arnold Asava, Craig Heck, Jerry Okal; RTI International: James Wren; USAID: Alison Cheng, Aasha Jackson, Noah Metheny, Cameron Wolf.

We thank the PLHIV interviewers from NAFOPHANU, RéCAP+, and RNP+ who conducted the interviews and we are especially grateful to the PLHIV from Cameroon, Senegal, and Uganda who participated in the surveys, cognitive interviews, and FGDs, and the many stakeholders who provided their input throughout the Stigma Index update process.

Author's contributions: Project conception: J.P., S.G., C.M., U.A.; project oversight: B.A.F.; development of Stigma Index update process: J.P., S.G., S.D.B., U.A., C.M., L.N., J.H., B.A.F.; study design: S.D.B., B.A.F., L.N., S.G., J.P., A.G.; desk review and key informant interviews: A.G., B.A.F.; protocol development: S.D.B., B.A.F., A.G., S.K., L.N., D.D., U.T.; data collection: S.D.B., D.D., B.A.F., S.K., L.N., U.T.; data analysis: T.M., A.G., L.N.; data interpretation and Stigma Index revisions: B.A.F., A.G., L.N., C.M., L.S., F.A., S.D.B., S.G., J.H., J.P., U.A.; article preparation: B.A.F., T.M.; article review: all authors. All authors read and approved the final article.

The contents of this article are the sole responsibility of the authors and do not necessarily reflect the views of the US President's Emergency Plan for AIDS Relief (PEPFAR), the US Agency for International Development (USAID) or the US Government.

Support for the Stigma Index update through the Population Council's Project SOAR (Cooperative Agreement AID-OAA-A-14-00060) was made possible by the generous support of the American people through the President's Emergency Plan for AIDS Relief (PEPFAR) and the US Agency for International Development (USAID). Stefan Baral's effort was supported by the National Institutes of Mental Health (NIMH) of the US National Institutes of Health (grant RO1MH110358).

Conflicts of interest

There are no conflicts of interest.

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A list of other author contributors is in the Acknowledgement section.

Keywords:

GIPA; HIV/AIDS; key population; measurement; resilience; stigma; Stigma Index

Copyright © 2020 The Author(s). Published by Wolters Kluwer Health, Inc.