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Editorial

Internalized stigma among people living with HIV: assessing the Internalized AIDS-Related Stigma Scale in four countries

Geibel, Scotta; Gottert, Anna; Friedland, Barbara A.b; Jeremiah, Kidolac; McClair, Tracy L.a; Mallouris, Christoforosd; Kentutsi, Stellae; Hows, Julianf; Sprague, Laurelg; Pulerwitz, Juliea; the PLHIV Stigma Index 2.0 Study Group in Cambodia, the Dominican Republic, and Uganda

Author Information
doi: 10.1097/QAD.0000000000002649
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Abstract

Introduction

The reduction and elimination of HIV-related stigma – conceptualized as the cooccurrence of labelling, stereotyping, separation, status loss and discrimination [1] – remain a high priority for the global HIV response [2,3]. Experiencing enacted stigma, a process of being devalued and/or targeted by others (e.g. being scolded or rejected, subjected to violence or having their HIV status involuntarily disclosed), can lead to people living with HIV (PLHIV) expecting future experiences of discrimination in healthcare or community settings [4]. PLHIV can also internalize these experiences or expected stigmas, resulting in a devaluation of self-esteem or self-concept [5]. Thus, studies of internalized HIV-related stigma have often assessed negative self-views among PLHIV, including feelings of ‘shame,’ ‘guilt’ or lower self-worth [4].

Numerous studies have demonstrated that the experience or expectation of enacted stigma has a negative impact on antiretroviral treatment (ART) adherence [6]. Studies and reviews have also shown internalized stigma to be a common global phenomenon [7,8] that is linked with poorer mental health, less social support, more HIV-related symptoms [4] and treatment-seeking behaviour, although there is less evidence for direct associations with HIV treatment outcomes [6,9]. Valid and reliable measurement of internalized stigma is therefore essential towards understanding its moderating effect towards achieving viral suppression and improving overall health and quality of life among PLHIV.

A 2012 review assessed seven HIV-related internalized stigma scales for validity (content, criterion and construct), internal consistency and reproducibility (agreement and reliability), and responsiveness [10]. Most of these scales were found to have strong content validity, weak criterion validity (due to the absence of a ‘gold standard’ comparison) and indeterminate internal consistency (as factor analysis was not reported). Beginning in 2016, we reviewed these scales to select a measure of internalized stigma for several studies, including an updated version of the People Living with HIV Stigma Index (Stigma Index 2.0).

Driven by a consultative process led by the PLHIV community (GNP+ and ICW) and supported by several research institutions and stakeholders, a key goal of the Stigma Index 2.0 update was to ensure that internalized stigma was measured in a way that was both valid (measuring the intended concept) and reliable (comparable across countries and over time) [11]. Developed in 2008 by and for PLHIV to capture their experiences with stigma [12], the original version of the Stigma Index measured internalized stigma by asking ‘In the past 12 months, have you experienced any of the following feelings because of your HIV status?’ (yes/no), with seven items such as ‘I feel ashamed’, ‘I blame others’ and ‘I feel I should be punished’. The content of some of these items were similar to items in the Internalized AIDS-Related Stigma Scale (IA-RSS) developed by Kalichman et al.[13,14].

The Stigma Index 2.0 consultative group decided to adopt the IA-RSS as the measure of internalized stigma based on the original Stigma Index approach to measuring this construct, as well as previously reported acceptable content validity in a systematic review [10], good internal consistency reported by a previous study [14], brevity (six items) and relative ease of question/response administration compared with other available scales. Independently of the Stigma Index, researchers affiliated with Project SOAR (Population Council and the Tanzanian National Institute for Medical Research) also used the IA-RSS in 2018 in an implementation science study with female sex workers (FSWs) living with HIV in Tanzania [15].

Higher IA-RSS scores have previously been reported to correlate well with decreased HIV status disclosure, decreased access to social support and increased depression symptoms in South Africa, Swaziland, Uganda and the USA [14,16,17]. These results were a positive indication of potential expanded geographic and cultural relevance of IA-RSS and its ability to measure internalized stigma in these contexts. However, data from other contexts such as Asia and Latin America were needed. In addition, the literature lacks available information on IA-RSS exploratory or confirmatory factor analysis, in-depth assessment of scale item properties and fit, and acceptability of the scale items among PLHIV.

Measuring and monitoring internalized stigma is critical to understanding its impact on health and quality of life among PLHIV, as well as on achieving global HIV epidemic control. This article therefore aims to supplement existing knowledge about the IA-RSS by assessing its performance in four studies in Southeast Asia (one), Latin America (one) and sub-Saharan Africa (two). First, we describe the characteristics of the study populations and the distribution and reliability of the IA-RSS scale in the four studies. Second, we present factor loadings and conditional probabilities of scale items using confirmatory factor analysis. Third, we examine associations between the IA-RSS and key treatment outcomes of ART use and viral suppression. Finally, we share qualitative insights and perspectives from PLHIV in Uganda regarding the acceptability of IA-RSS item wording and content.

Methods

Data were collected from Stigma Index 2.0 implementations in Uganda, the Dominican Republic and Cambodia, and a cohort study assessing a community-located ART service model for FSWs in Tanzania. The methods utilized for these studies are described in detail elsewhere [15,18–20] and summarized in the following sections.

Study settings

The Stigma Index 2.0, a cross-sectional survey conducted by PLHIV to document stigma and discrimination among PLHIV, was implemented in Uganda (six districts, 2017), the Dominican Republic (six provinces, 2018) and Cambodia (six provinces, 2019). A quasi-experimental cohort study to test a community-centred intervention to increase ART uptake, retention and viral suppression was conducted among FSWs in Tanzania (two districts, 2018–2019). HIV prevalence among people age 15 years and older at the time of the studies ranged from less than 1% (Cambodia and the Dominican Republic) [21,22] to 6% in Uganda [23], and 9–12% in the study regions of Tanzania (Mbeya and Njombe) [24].

Recruitment, study populations and implementation

For the Stigma Index 2.0, venue-based (ART clinics, community-based organizations, PLHIV networks), snowball (i.e. study participants invited their peers to be interviewed) and registry-based (selecting from ART client lists) sampling methods were employed to recruit PLHIV – including key population subgroups – to ensure documentation of the diverse experiences of PLHIV. In Tanzania, FSW participants included those who tested HIV-positive at community HIV testing and counselling (HTC) outreach services; were previously diagnosed as HIV-positive but not on treatment for at least the past 3 months; or reached through brochures and announcements at health facilities, support group meetings and other HTC sessions. For this analysis, we used the Tanzania data from 12-month survey interviews. Stigma Index 2.0 interviews were conducted by PLHIV research assistants, and the Tanzania interviews by trained research officers.

Ethical approvals

The protocol and informed consent forms were approved by the Population Council Institutional Review Board (USA; all surveys), the National Ethics Committee for Health Research (Cambodia), Consejo Nacional de Bioética en Salud (Dominican Republic), the Mildmay Research Ethics Committee (Uganda), the Medical Research Coordinating Committee (MRCC) of the National Health Institute for Medical Research (NIMR; Tanzania) and the Mbeya Medical Research and Ethics Review Committee (Tanzania). Informed consent was obtained from all participants.

Measures and statistical analyses

IA-RSS scale items were administered by asking the participants if they ‘disagree or agree with’ six specific items: ‘It is difficult to tell people about my HIV infection’, ‘Being HIV positive makes me feel dirty’, ‘I feel guilty that I am HIV positive’, ‘I am ashamed that I am HIV positive’, ‘I sometimes feel worthless because I am HIV positive’ and ‘I hide my HIV status from others’. Answers were coded dichotomously as 1 (’agreed’) or 0 (’disagreed’ or refused to answer). Refusals to answer were rare (no more than five refusal responses on any item) and only occurred in the Dominican Republic and Uganda, and the coding of ‘refused to answer’ to 0 did not substantially alter the study results or interpretation. For each country, a total score (ranging from 0 to 6) was obtained by adding each item response.

Stata version 15.1 (College Station, Texas, USA) was used for all quantitative analyses. Participant characteristics and IA-RSS item agreement were summarized using descriptive statistics. Internal consistency of the IA-RSS was assessed using Kuder-Richardson 20 statistic. Associations between IA-RSS scores (ranging from 0 to a ‘high internalized stigma’ score of 6, dependent variable) and key outcomes (as independent variables) were analysed using multivariate regression models, and reported as adjusted odds ratios (aORs) with 95% confidence intervals (95% CIs). Depression/anxiety was measured by the PHQ-4 scale in Cambodia, the Dominican Republic and Uganda, and depression by the PHQ-9 scale in Tanzania. These scales are similar in that two items in the PHQ-4 and PHQ-9 are identical. PHQ-4 scores were categorized and ordinally coded as none or minimal (0–2), mild (3–5), moderate (6–8) and severe (9–12). The PHQ-9 scores were coded as none or minimal (0–4), mild (5–9), moderate (10–14), moderately severe (15–19) and severe (20–27). Associations between the IA-RSS scores and depression were assessed using ordinal logistic regression. Logistic regression was used to assess IA-RSS associations with current ART use (yes, no); self-reported knowledge of viral suppression status (suppressed, not suppressed/unknown); and, in Tanzania, viral suppression per dried blood spot analysis (≤1000 and >1000 copies/ml). Multivariate models controlled for age, years knowing HIV status and education in Cambodia, Dominican Republic and Uganda, and for age and years knowing HIV status in Tanzania.

Confirmatory factor analysis methods were employed to assess the performance of individual IA-RSS items. Standardized factor loadings were compared, and equation-level goodness of fit were assessed using Stata's structural equation modelling (sem) procedures [25] to gauge how well the latent trait (internalized stigma) is measured by the six individual items. The sem analysis assumes a continuous distribution in item variables; however, equation-level goodness of fit [root mean squared error of approximation (RMSEA), comparative fit index (CFI) and Tucker-Lewis index (TLI)] and correlation (r2) statistics for individual items have been previously reported to remain unbiased for items with two response categories [26], and therefore, these statistics are reported here. Acceptable fit in the model was determined using cutoffs of 0.06 for the RMSEA and 0.95 for both CFI and TLI [27]. A one-parameter logistic Item Response Theory (IRT, or Rasch) model – constraining the variance of all items to 1 to facilitate interpretation – was then constructed using Stata's gsem procedures [25] to graph conditional probabilities of an ‘agree’ response for each item given the latent trait.

Comprehension and acceptability assessment

During pretesting of the Stigma Index 2.0 questionnaire in Uganda, additional qualitative person-to-person questions were asked of PLHIV to assess cognitive understanding and acceptability of the IA-RSS question and response items. Twenty PLHIV were purposively selected through PLHIV networks, community-based organizations serving key populations and ART clinics to capture views from selected subgroups including women (10), men (eight) and transgender people (two); of whom some were also FSWs (five), MSM (two) and/or people who use drugs (PWUD, two). After administering the IA-RSS, participants were asked ‘how did (responding to the IA-RSS items) make you feel’, to what extent they found any of the IA-RSS items ‘particularly difficult (emotionally) to answer’ and if they thought ‘it is important to ask’ PLHIV to respond to the IA-RSS. Participant open-ended responses were recorded verbatim on paper, transposed to electronic format and analysed thematically to assess comprehension and acceptability of the IA-RSS for inclusion in the final Stigma Index 2.0 questionnaire.

Results

Sociodemographic characteristics of participants in Cambodia (n = 1207), the Dominican Republic (n = 891), Uganda (n = 391) and Tanzania (n = 527) are displayed in Table 1. Mean age (years) ranged from 33.4 in Tanzania to 44.9 in Cambodia. The majority of participants were female by birth; 100%, Tanzania; 60.8%, Cambodia; 58.1%, Dominican Republic; and 59.9%, Uganda. Transgender persons were interviewed in Cambodia (eight), Dominican Republic (25) and Uganda (26). All participants in Tanzania were FSWs, and about one-third of participants from Dominican Republic and Uganda reported being sex workers. MSM and PWUD were interviewed in the Dominican Republic (17.3 and 11.3%, respectively) and Uganda (9.0 and 8.2%, respectively). People of Haitian origin were a key ethnic minority population distinctive to the Dominican Republic (10.1%). In Cambodia, 3.0% reported being part of any key population subgroup.

Table 1
Table 1:
Participant characteristics, Internalized AIDS-Related Stigma Scale item responses and characteristics, and associations between Internalized AIDS-Related Stigma Scale scores and health-related outcomes.

In all countries, respondents consistently agreed with IA-RSS items 1 (’It is difficult to tell people about my HIV infection’) and 6 (’I hide my HIV status from others’) more than they agreed with items 2, 3, 4 and 5 (Table 1). In the Dominican Republic, participants agreed with items 1 and 6 at 85.1 and 68.9%, respectively, while agreement with items 2 through 5 ranged lower from 20.0 to 33.6%. This distribution of item responses was similar in Uganda and Tanzania. In Cambodia, items 1 (73.2%) and 6 (72.8%) also had the highest agreement; however, agreement with the other items was markedly higher (range 51.8–71.5%) than in the other countries. Consequently, the full scale mean score in Cambodia (3.84) was higher than the Dominican Republic (2.62), Uganda (2.06) and Tanzania (2.35). Internal consistency was more than 0.70 in all surveys (Kuder-Richardson 20, ranging from 0.71 to 0.84).

A similar pattern of differences between items 1 and 6 vs. items 2–5 was reflected in the standardized factor loadings and R2 statistics (Table 2), which explain the magnitude of each IA-RSS scale item's contribution to the latent trait of internalized stigma. In all surveys, the standardized factor loadings and R2 for items 1 and 6 were consistently lower (<0.47 factor loadings, <0.22 R2 in all countries) than for items 2 through 5 (factor loading range: 0.54–0.84). Goodness of fit statistics for the scale were acceptable according to the CFI (all countries ≥0.950). TLI were 0.950 and RMSEA ≤0.06 in all countries except Uganda (0.917 and 0.091, respectively.

Table 2
Table 2:
Internalized AIDS-Related Stigma Scale confirmatory factor analysis results, including factor loadings and goodness of fit statistics.

Figure 1 illustrates the predicted probabilities of an ‘agree’ response for each IA-RSS item in the latent trait (with variances constrained to be identical). In all countries, items 1 and 6 have the least degree of ‘difficulty’ (the likelihood a respondent who is internalizing stigma will endorse or agree with the individual scale item). This is evident in that predicted means tend to rise earlier or higher for items 1 and 6. Items 2 through 5 have markedly higher ‘difficulty’ in the Dominican Republic, Uganda and Tanzania, while item 5 also had comparatively lower ‘difficulty’ in Cambodia.

Fig. 1
Fig. 1:
Predicted probabilities of an ‘agree’ response for each Internalized AIDS-Related Stigma Scale item in the latent trait of internalized stigma.

Higher IA-RSS scores were significantly associated (all P < 0.001) with higher depression/anxiety measures in all countries (Table 1; aORs ranging from 1.43 in Cambodia to 1.53 in Uganda). Higher IA-RSS scores were significantly associated with lower current ART use in the Dominican Republic (aOR 0.73, 95% CI: 0.57–0.92, P < 0.01) and Tanzania (aOR 0.87, 95% CI: 0.76–0.99, P < 0.05), and with lower self-reported viral suppression in Uganda (0.83, 95% CI: 0.74–0.94, P < 0.01) and Tanzania (0.91, 95% CI: 0.83–0.997, P < 0.05). In Tanzania, the only survey wherein a biological viral load measurement was taken, there was no association between IA-RSS score and viral suppression.

People living with HIV views on Internalized AIDS-Related Stigma Scale content and acceptability

In total, 10 women, eight men and two transgender people in Uganda participated in pretesting of the Stigma Index 2.0 and provided qualitative views on the IA-RSS items. Of these, nine were members of key and vulnerable populations [five FSWs (of whom two were also PWUD), two MSM and two transgender people] affiliated with community-based organizations. Four were affiliated with a national PLHIV organization, and seven were recruited through ART clinics.

When asked how agreeing or disagreeing with the specific IA-RSS items made them feel, many participants expressed that they were able to answer without problems, but some also said that some items had the potential to cause emotional discomfort.

’I did not feel bad; the questions did not emotionally affect me -- for example I have never felt guilty about being HIV positive.’ Age 25, FSW, recruited through community-based organization

’Personally, I was comfortable with it because I know these things happen to people, these things happen in the communities… (but) it's quite emotional… being guilty that I am HIV positive [referring to IA-RSS item 3]’. Age 46, male, recruited through ART clinic

Two participants mentioned IA-RSS item 2 (’Being HIV positive makes me feel dirty’) as eliciting either shock or strong disagreement.

’I feel bad for someone who says that I am “dirty” and avoid being nearer to me’. Age 20, MSM, recruited through community-based organization

All participants, however, felt that the information obtained from the IA-RSS was important at both personal and broader levels:

’(It is) important to know situations people are living with HIV go through and how they are progressing in life’. Age 44, female, recruited through PLHIV organization

’The questions are very important and help the researcher to measure the stigma levels and come up with strategies to address self-stigma and discrimination among PLHIV’. Age 43, male, recruited through ART clinic

Discussion

Effective measurement of internalized stigma is essential to understanding and mitigating its effects on health, quality of life and HIV treatment outcomes among PLHIV. Yet, to date, there have been minimal psychometric assessments of associated scales and measures. Previous positive reports and ease of use of the IA-RSS make it an attractive option for use in research and programme measurement. Previous studies have primarily only assessed internal consistencies, correlations of IA-RSS scores with HIV status disclosure and correlations with depression [13–16]. More information on IA-RSS item properties and fit is needed, and therefore, our findings add valuable information to the available literature based on IA-RSS data from four countries across three continents.

This analysis found that although depression was strongly correlated with higher IA-RSS score in all countries, results were mixed when testing associations between the IA-RSS and HIV-related treatment outcomes. Two of the four country surveys found the IA-RSS to be significantly and inversely correlated with current ART use, and two with self-reported viral suppression (i.e. awareness of being virally suppressed vs. awareness of not being suppressed or lack of awareness). In the one survey with biomedical viral load measurement (Tanzania), however, no correlation with viral suppression was found. These findings are consistent with other reports that internalized stigma is clearly associated with mental health [4], which might be partially explained in that similar constructs in the IA-RSS are explored in the PHQ-4 (feeling hopeless) and PHQ-9 (feeling hopeless, ‘bad about yourself’). Further investigation of internalized stigma's impact on treatment outcomes need to be explored more fully. For example, one study reported that such a relationship was moderated by level of engagement with healthcare providers (i.e. higher internalized stigma tended to predict adverse treatment outcomes only among PLHIV who had less interaction with healthcare providers) [9].

IA-RSS scale items 1 (’It is difficult to tell people about my HIV infection’) and 6 (’I hide my HIV status from others’) performed differently than items 2–5 in as indicated by the CFA. Although the reasons for these differences are not clear, items 1 and 6 appear to reflect respondents’ disposition towards public disclosure of their HIV status, whereas items 2–5 focus more on how respondents feel about themselves. This suggests that the IA-RSS scale summarizes these two domains. Cambodia, however, had some notable distinctions from the other three countries, however, with higher factor loadings and difficulties for items 2–5, especially for item 4.

It should be noted that our findings are limited in that an exploratory factor analysis (EFA) was not conducted; our objective was not to develop or explore the factor structure of internalized stigma, but to confirm previously documented promising performance of the existing IA-RSS scale. Still, after confirmatory analysis suggested potential differences in performance between items 1 and 6 vs. items 2–5, we assessed the internal consistency and goodness of fit when removing items 1 and 6 from the scale. Differences in the KR-20 and goodness of fit statistics were minimal between the full six-item and reduced four-item scale. Another limitation of the IA-RSS is that it does not consider intersectional stigma associated with the multiple coexisting identities of PLHIV (e.g. by asking about internalized stigma associated with key population status), which is important for understanding stigma more holistically [11].

During the consultative process in which the IA-RSS was considered for inclusion in the Stigma Index 2.0, some experts expressed concern that IA-RSS items were overly negative in language and tone. This prompted debate over whether the IA-RSS may trigger a negative emotional response in some individuals who are asked these questions, and whether it would be preferable to use a measure of internalized stigma that captures more ‘positive content’. We decided to proceed with using the IA-RSS, as experts and advocates guiding the Stigma Index 2.0 believed it remains important to document the negative manifestations of internalized stigma. The decision to retain the IA-RSS was supported by interview participants in Uganda, who said that they were generally comfortable responding to the IA-RSS and articulated that the information gathered through this measure was important in terms of highlighting challenges that PLHIV face and guiding prevention efforts. It is a limitation, however, that this information comes from a relatively small group of PLHIV in only one country.

Although our findings show that the IA-RSS effectively measures internalized stigma, researchers should also seek to measure and report resilience in areas such as self-respect, coping with stress and finding love. To this end, we recommend a complementary scale intended to measure resilience among PLHIV, which was developed and incorporated into the Stigma Index 2.0 as described in detail elsewhere [20].

Conclusion

These findings support the continued use of the IA-RSS to measure internalized stigma in different contexts worldwide. We recommend complementing the IA-RSS with measures or scales of positive constructs such as resilience. Achieving this balance is important towards gathering more holistic information on internalized stigma and assessing its impact on current global efforts to ensure PLHIV treatment needs are met. This study also found associations of the IA-RSS with negative treatment outcomes in some, but not all, settings. It may be that internalized stigma plays more of a moderating role on treatment and viral suppression. Further study is needed to explore IA-RSS refinements and to better understand the relationship between internalized stigma and HIV treatment outcomes. Accelerated development of interventions to reduce internalized stigma and to improve the mental and physical health among PLHIV is recommended.

Acknowledgements

The authors thank the People Living with HIV Stigma Index 2.0 respondents and interviewers in Cambodia, the Dominican Republic and Uganda, and the community-based ART study participants in Tanzania. We also would like to acknowledge the members of the People Living with HIV Stigma Index 2.0 study group who implemented the original studies that generated the data for this analysis, as follows. In Cambodia: Sotheariddh Sorn, Ashish Bajracharya, Tep Navuth, Molyaneth Heng, Steve Wignall and Polin Ung. In the Dominican Republic: Dulce Almonte, Felipa García, Yordana Dolores, Angel Del Valle, Alejandra Colom and Eileen Yam. In Uganda: Stella Kentusi, Prossy Nanyanzi, Richard Mugumya, Richard Batamwita, Enos Sande, Jerry Okal and Arnold Asava. We thank the study team that implemented the Tanzania FSW study, including Lung Vu, Waimar Tun, Denna Michael, Neema Makyao and Lou Apicella. We also acknowledge and thank other members of the PLHIV Stigma Index Small Working Group involved in the process of updating the Stigma Index 2.0 from 2016 to 2018, which included: Julian Hows, Laura Nyblade, Stefan Baral, Florence Anam, Ugochukwu Amanyeiwe, Alison Cheng, Aasha Jackson, Noah Metheny and Cameron Wolf.

This study was made possible by the generous support of the American people through the President's Emergency Plan for AIDS Relief (PEPFAR) and United States Agency for International Development (USAID). Funding for the studies generating data from the Dominican Republic, Uganda and Tanzania was provided through the Population Council's Project SOAR (Cooperative Agreement AID-OAA-A-14-00060). Data used from the Cambodia study were funded by the USAID Cambodia through FHI360's LINKAGES project (Cooperative Agreement AID-OAA-A-14-00045) and the Joint United Nations Programme on HIV and AIDS (UNAIDS) Cambodia.

The contents of this paper are the sole responsibility of the authors and do not necessarily reflect the views of PEPFAR, USAID, or the United States Government. The views expressed are solely those of the authors and do not represent those of UNAIDS.

Conflicts of interest

There are no conflicts of interest.

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Members of the Stigma Index 2.0 study group are indicated in the Acknowledgements section.

Keywords:

discrimination; internalized stigma; people living with HIV; scale measurement; stigma

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