Characterizing the Relationship between HIV Peer Support Groups and Internalized Stigma Among People Living with HIV in Nigeria.

HIV-related stigma remains a significant barrier to implementing effective HIV treatment and prevention strategies in Nigeria. Despite the high uptake of peer support groups among people living with HIV (PLHIV) in Nigeria, the potential role of such peer support on the burden of internalized stigma remains understudied. To address this gap, we conducted a secondary analysis of the PLHIV Stigma Index 2.0, a socio-behavioral survey implemented by PLHIV led-organizations to assess the relationship between group membership and internalized stigma. Internalized stigma was measured using the Internalized AIDS-related Stigma Scale. Multinomial logistic regression was used to measure the association between self-reported engagement in peer support groups and internalized stigma adjusting for age, education, duration since HIV diagnosis, employment, disclosure status, and sex-work engagement. Of the 1,244 respondents in this study, 75.1% were engaged in HIV peer support groups. Over half (55.5%) and about one-fourth (27.3%) demonstrated low/moderate and high levels of internalized stigma, respectively. PLHIV engaged in HIV peer support groups were less likely to report both low/moderate (versus no) (adjusted odds ratio (aOR): 0.47 [95% CI: 0.27 to 0.81]; p = 0.006) and high (versus no) (aOR: 0.30 [95% CI: 0.17 to 0.53]; p < 0.001) levels of internalized stigma compared to those not engaged. In this study, the burden of internalized stigma is high among PLHIV in Nigeria. However, engagement in peer support groups appears to mitigate these stigmas. Stigma mitigation strategies to increase peer support may represent a critical tool in decreasing sustained HIV treatment gaps among PLHIV in Nigeria.

Global assessment of existing HIV and key population stigma indicators: A data mapping exercise to inform country-level stigma measurement.

BACKGROUND: Stigma is an established barrier to the provision and uptake of HIV prevention, diagnostic, and treatment services. Despite consensus on the importance of addressing stigma, there are currently no country-level summary measures to characterize stigma and track progress in reducing stigma around the globe. This data mapping exercise aimed to assess the potential for existing data to be used to summarize and track stigma, including discrimination, related to HIV status, or key population membership at the country level. METHODS AND FINDINGS: This study assessed existing indicators of stigma related to living with HIV or belonging to 1 of 4 key populations including gay men and other men who have sex with men, sex workers, people who use drugs, and transgender persons. UNAIDS Strategic Information Department led an initial drafting of possible domains, subdomains, and indicators, and a 3-week e-consultation was held to provide feedback. From the e-consultation, 44 indicators were proposed for HIV stigma; 14 for sexual minority stigma (including sexual behavior or orientation) related to men who have sex with men; 12 for sex work stigma; 10 for drug use stigma; and 17 for gender identity stigma related to transgender persons. We conducted a global data mapping exercise to identify and describe the availability and quality of stigma data across countries with the following sources: UNAIDS National Commitments and Policies Instrument (NCPI) database; Multiple Indicator Cluster Surveys (MICS); Demographic and Health Surveys (DHS); People Living with HIV Stigma Index surveys; HIV Key Populations Data Repository; Integrated Biological and Behavioral Surveys (IBBS); and network databases. Data extraction was conducted between August and November 2020. Indicators were evaluated based on the following: if an existing data source could be identified; the number of countries for which data were available for the indicator at present and in the future; variation in the indicator across countries; and considerations of data quality or accuracy. This mapping exercise resulted in the identification of 24 HIV stigma indicators and 10 key population indicators as having potential to be used at present in the creation of valid summary measures of stigma at the country level. These indicators may allow assessment of legal, societal, and behavioral manifestations of stigma across population groups and settings. Study limitations include potential selection bias due to available data sources to the research team and other biases due to the exploratory nature of this data mapping process. CONCLUSIONS: Based on the current state of data available, several indicators have the potential to characterize the level and nature of stigma affecting people living with HIV and key populations across countries and across time. This exercise revealed challenges for an empirical process reliant on existing data to determine how to weight and best combine indicators into indices. However, results for this study can be combined with participatory processes to inform summary measure development and set data collection priorities going forward.

Methods in HIV-Related Intersectional Stigma Research: Core Elements and Opportunities.

Researchers are increasingly recognizing the importance of studying and addressing intersectional stigma within the field of HIV. Yet, researchers have, arguably, struggled to operationalize intersectional stigma. To ensure that future research and methodological innovation is guided by frameworks from which this area of inquiry has arisen, we propose a series of core elements for future HIV-related intersectional stigma research. These core elements include multidimensional, multilevel, multidirectional, and action-oriented methods that sharpen focus on, and aim to transform, interlocking and reinforcing systems of oppression. We further identify opportunities for advancing HIV-related intersectional stigma research, including reducing barriers to and strengthening investments in resources, building capacity to engage in research and implementation of interventions, and creating meaningful pathways for HIV-related intersectional stigma research to produce structural change. Ultimately, the expected payoff for incorporating these core elements is a body of HIV-related intersectional stigma research that is both better aligned with the transformative potential of intersectionality and better positioned to achieve the goals of Ending the HIV Epidemic in the United States and globally. (Am J Public Health. 2022;112(S4):S413-S419. https://doi.org/10.2105/AJPH.2021.306710).

Participatory praxis as an imperative for health-related stigma research.

BACKGROUND: Participatory praxis is increasingly valued for the reliability, validity, and relevance of research results that it fosters. Participatory methods become an imperative in health-related stigma research, where the constitutive elements of stigma, healthcare settings, and research each operate on hierarchies that push those with less social power to the margins. DISCUSSION: Particularly for people who are stigmatized, participatory methods balance the scales of equity by restructuring power relationships. As such, participatory praxis facilitates a research process that is responsive to community-identified priorities and creates community ownership of the research, catalyzing policy change at multiple levels and foregrounds, and addresses risks to communities from participating in research. Additionally, through upholding the agency and leadership of communities facing stigma, it can help to mitigate stigma's harmful effects. Health-related stigma research can reduce the health inequities faced by stigmatized groups if funders and institutions require and reward community participation and if researchers commit to reflexive, participatory practices. A research agenda focused on participatory praxis in health-related stigma research could stimulate increased use of such methods. CONCLUSION: For community-engaged practice to become more than an ethical aspiration, structural changes in the funding, training, publishing, and tenure processes will be necessary.

It's not "all in your head": critical knowledge gaps on internalized HIV stigma and a call for integrating social and structural conceptualizations.

BACKGROUND: Internalized HIV stigma is a public health concern as it can compromise HIV prevention, care and treatment. This paper has two aims. First, it highlights the urgent need for research evidence on internalized HIV stigma based on critical knowledge gaps. Here, critical knowledge gaps were identified based on most up-to-date systematic review-level evidence on internalized stigma related to HIV and mental health difficulties. Secondly, the paper calls for a shift in focus of internalized HIV stigma research, one that moves beyond psychological frameworks to integrate social, structural and intersectional conceptualizations of stigma. This part of the paper reviews the evolution of stigma theory since Goffman's 1963 seminal work - which defined stigma - to present. MAIN TEXT: Despite studies consistently suggesting that internalized HIV stigma is more prevalent than enacted stigma, there is little evidence of well-established programs to address it. In addition to this, considerable gaps in basic knowledge about the drivers of internalized HIV stigma hamper the development of an evidence-based response to the problem. The limited intervention and epidemiological research on the topic treats internalized HIV stigma as a purely psychological phenomenon. The second part of the paper provides arguments for studying internalized HIV stigma as a function of social and structural forces: (1) Individual-level interventions for internalized HIV stigma are rooted in out-dated theoretical assumptions; (2) From an ethics point of view, it could be argued that individual-level interventions rely on a victim-centric approach to a public health problem; (3) Social and structural approaches to internalized HIV stigma must be explored due to the high opportunity cost associated with small-scale individual-level interventions. CONCLUSIONS: Critical gaps in intervention and epidemiological research in internalized HIV stigma remain. There has been an absence of a shared, sound theoretical understanding of internalized HIV stigma as a manifestation of social and structural factors. This commentary sought to stimulate a dialogue to remedy this absence. Future research should take into account ethical considerations, the evolution of stigma theory over the past five decades, intersectionality and opportunity cost when framing hypotheses, developing theories of change and designing interventions.

Defining rights-based indicators for HIV epidemic transition.

In a Policy Forum, Joseph Amon and colleagues discuss human rights indicators for tracking progress toward ending the HIV epidemic.

Power, data and social accountability: defining a community-led monitoring model for strengthened health service delivery.

INTRODUCTION: Despite international commitment to achieving the end of HIV as a public health threat, progress is off-track and existing gaps have been exacerbated by COVID-19's collision with existing pandemics. Born out of models of political accountability and historical healthcare advocacy led by people living with HIV, community-led monitoring (CLM) of health service delivery holds potential as a social accountability model to increase the accessibility and quality of health systems. However, the effectiveness of the CLM model in strengthening accountability and improving service delivery relies on its alignment with evidence-based principles for social accountability mechanisms. We propose a set of unifying principles for CLM to support the impact on the quality and availability of health services. DISCUSSION: Building on the social accountability literature, core CLM implementation principles are defined. CLM programmes include a community-led and independent data collection effort, in which the data tools and methodology are designed by service users and communities most vulnerable to, and most impacted by, service quality. Data are collected routinely, with an emphasis on prioritizing and protecting respondents, and are then be used to conduct routine and community-led advocacy, with the aim of increasing duty-bearer accountability to service users. CLM efforts should represent a broad and collective community response, led independently by impacted communities, incorporating both data collection and advocacy, and should be understood as a long-term approach to building meaningful engagement in systems-wide improvements rather than discrete interventions. CONCLUSIONS: The CLM model is an important social accountability mechanism for improving the responsiveness of critical health services and systems to communities. By establishing a collective understanding of CLM principles, this model paves the way for improved proliferation of CLM with fidelity of implementation approaches to core principles, rigorous examinations of CLM implementation approaches, impact assessments and evaluations of CLM's influence on service quality improvement.

Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement.

INTRODUCTION: Despite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high-impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world-leading examples of equitable research-community partnerships and suggest actionable key steps to achieving this goal. DISCUSSION: In the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high-impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community-led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner. CONCLUSIONS: There is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.

Associations Between Experienced HIV Stigma, Resulting Consequences, and the HIV Care Continuum: Moderating Effects of Two Resilience Characteristics Among Persons Living with HIV (PLWH) in Louisiana.

INTRODUCTION: HIV-related stigma continues to serve as a major barrier to HIV care. HIV stigma reduction interventions are urgently needed to promote and protect the health of persons living with HIV (PLWH). Resilience has been identified as a potential leverage to mitigate the impact of HIV-related stigma among PLWH. METHODS: We examined whether two resilience measures (i.e., social support and resilience assets and resources [RAR]) moderated the relationship between experienced HIV stigma and the HIV care continuum as well as how they moderated the relationship between the consequences of experienced HIV stigma (CES) and the HIV care continuum among 300 PLWH in Louisiana. Separate bootstrapping analyses were conducted to test for evidence of moderated moderation. RESULTS: Most participants were Black (79%) and had been living with HIV for 10 years or more. A relatively high sample of men who have sex with men (MSM) were enrolled (37%). The most common CES were depression (67%). The most common manifestation of experienced HIV stigma was being gossiped about (53%). Participants reported moderate levels of social support. In terms of RAR, most participants (71%) reported that they knew of groups that could support them in responding to experienced HIV stigma. After adjusting for potential covariates, social support and RAR both significantly moderated the relationship between experienced HIV stigma and length of time since their last HIV care visit, B(SE) = .003(.001), p = .03. At high levels of RAR and high levels of social support, those with higher levels of experienced HIV stigma reported a longer length of time since their last HIV care visit than those who reported lower levels of experienced HIV stigma (B(SE) = .17(.04), p < .001). RAR moderated the relationship between social support and HIV care, B(SE) = .01(.004), p < .001. Those who experienced greater CES reported a longer length of time since their last doctor's visit B(SE) = .04(.02), p < .05. Experienced HIV stigma was not significantly associated with viral load results. However, social support significantly moderated the relationship between experienced stigma and viral load results. At higher levels of social support, those who experienced lower levels of stigma were more likely to report an undetectable viral load than those who had higher levels of stigma, B(SE) = - .13(.03), p < .001. Finally, both RAR and social support moderated the relationship between CES and viral load results. Those who reported higher levels of RAR B(SE) = - .07(.02), p < .001, and social support, B(SE) = - .02(.01), p < .05, also reported having an undetectable viral load at most recent HIV care visit. CES was not significantly related to reporting an undetectable viral load (p = .61). CONCLUSIONS: Enrolled PLWH already have some level of resilience which plays an important protective role within the context of the HIV care continuum up to a certain extent. Interventions to enhance the RAR and social support components may be useful especially among MSM and persons who have been living with HIV for a shorter period of time.

Peer- and community-led responses to HIV: A scoping review.

INTRODUCTION: In June 2021, United Nations (UN) Member States committed to ambitious targets for scaling up community-led responses by 2025 toward meeting the goals of ending the AIDS epidemic by 2030. These targets build on UN Member States 2016 commitments to ensure that 30% of HIV testing and treatment programmes are community-led by 2030. At its current pace, the world is not likely to meet these nor other global HIV targets, as evidenced by current epidemiologic trends. The COVID-19 pandemic threatens to further slow momentum made to date. The purpose of this paper is to review available evidence on the comparative advantages of community-led HIV responses that can better inform policy making towards getting the world back on track. METHODS: We conducted a scoping review to gather available evidence on peer- and community-led HIV responses. Using UNAIDS' definition of 'community-led' and following PRISMA guidelines, we searched peer-reviewed literature published from January 1982 through September 2020. We limited our search to articles reporting findings from randomized controlled trials as well as from quasi-experimental, prospective, pre/post-test evaluation, and cross-sectional study designs. The overall goals of this scoping review were to gather available evidence on community-led responses and their impact on HIV outcomes, and to identify key concepts that can be used to quickly inform policy, practice, and research. FINDINGS: Our initial search yielded 279 records. After screening for relevance and conducting cross-validation, 48 articles were selected. Most studies took place in the global south (n = 27) and a third (n = 17) involved youth. Sixty-five percent of articles (n = 31) described the comparative advantage of peer- and community-led direct services, e.g., prevention and education (n = 23) testing, care, and treatment programs (n = 8). We identified more than 40 beneficial outcomes linked to a range of peer- and community-led HIV activities. They include improved HIV-related knowledge, attitudes, intentions, self-efficacy, risk behaviours, risk appraisals, health literacy, adherence, and viral suppression. Ten studies reported improvements in HIV service access, quality, linkage, utilization, and retention resulting from peer- or community-led programs or initiatives. Three studies reported structural level changes, including positive influences on clinic wait times, treatment stockouts, service coverage, and exclusionary practices. CONCLUSIONS AND RECOMMENDATIONS: Findings from our scoping review underscore the comparative advantage of peer- and community-led HIV responses. Specifically, the evidence from the published literature leads us to recommend, where possible, that prevention programs, especially those intended for people living with and disproportionately affected by HIV, be peer- and community-led. In addition, treatment services should strive to integrate specific peer- and community-led components informed by differentiated care models. Future research is needed and should focus on generating additional quantitative evidence on cost effectiveness and on the synergistic effects of bundling two or more peer- and community-led interventions.

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

OBJECTIVE(S): To describe the process of updating the People Living with HIV (PLHIV) Stigma Index (Stigma Index) to reflect current global treatment guidelines and to better measure intersecting stigmas and resilience. DESIGN: Through an iterative process driven by PLHIV, the Stigma Index was revised, pretested, and formally evaluated in three cross-sectional studies. METHODS: Between March and October 2017, 1153 surveys (n = 377, Cameroon; n = 390, Senegal; n = 391, Uganda) were conducted with PLHIV at least 18 years old who had known their status for at least 1 year. PLHIV interviewers administered the survey on tablet computers or mobile phones to a diverse group of purposively sampled respondents recruited through PLHIV networks, community-based organizations, HIV clinics, and snowball sampling. Sixty respondents participated in cognitive interviews (20 per country) to assess if questions were understood as intended, and eight focus groups (Uganda only) assessed relevance of the survey, overall. RESULTS: The Stigma Index 2.0 performed well and was relevant to PLHIV in all three countries. HIV-related stigma was experienced by more than one-third of respondents, including in HIV care settings. High rates of stigma experienced by key populations (such as MSM and sex workers) impeded access to HIV services. Many PLHIV also demonstrated resilience per the new PLHIV Resilience Scale. CONCLUSION: The Stigma Index 2.0 is now more relevant to the current context of the HIV/AIDS epidemic and response. Results will be critical for addressing gaps in program design and policies that must be overcome to support PLHIV engaging in services, adhering to antiretroviral therapy, being virally suppressed, and leading healthy, stigma-free lives.

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

OBJECTIVE: Measuring internalized stigma is critical to understanding its impact on the health and quality of life of people living with HIV (PLHIV). The aim of this study was to assess the performance of the Internalized AIDS-Related Stigma Scale (IA-RSS). DESIGN: Secondary analysis of the six-item IA-RSS was conducted using data from four cross-sectional surveys implemented in Cambodia (n = 1207), the Dominican Republic (n = 891), Uganda (n = 391) and Tanzania (n = 529) between 2018 and 2019. METHODS: IA-RSS scale item distribution was described. Multivariate regression models measured correlations between the IA-RSS and depression, antiretroviral therapy (ART) use and viral suppression. Confirmatory factor analysis assessed IA-RSS reliability and performance through analysis of standardized factor loadings and conditional probabilities of scale items. Analysis of qualitative interviews with PLHIV explored acceptability of IA-RSS item content. RESULTS: Mean IA-RSS scores (possible 0-6) ranged from 2.06 (Uganda) to 3.84 (Cambodia), and internal consistency was more than 0.70 in each country (Kuder-Richardson 20), ranging from 0.71 to 0.83. Higher IA-RSS scores were strongly correlated with depression in (P < 0.001 in all countries), and inversely associated with current ART use (Dominican Republic and Tanzania) and self-reported viral suppression (Uganda and Tanzania). Confirmatory factor analysis showed good model fit (all CFI ≥ 0.950), but also that the IA-RSS may summarize two domains related to HIV status disclosure (two items) and PLHIV feelings about themselves (four items). CONCLUSION: Strong performance across countries supports continued use of the IA-RSS. Further study is needed to explore potential item refinements and to better understand the relationship between internalized stigma and HIV treatment outcomes.

Measuring Sexual Behavior Stigma to Inform Effective HIV Prevention and Treatment Programs for Key Populations.

BACKGROUND: The levels of coverage of human immunodeficiency virus (HIV) treatment and prevention services needed to change the trajectory of the HIV epidemic among key populations, including gay men and other men who have sex with men (MSM) and sex workers, have consistently been shown to be limited by stigma. OBJECTIVE: The aim of this study was to propose an agenda for the goals and approaches of a sexual behavior stigma surveillance effort for key populations, with a focus on collecting surveillance data from 4 groups: (1) members of key population groups themselves (regardless of HIV status), (2) people living with HIV (PLHIV) who are also members of key populations, (3) members of nonkey populations, and (4) health workers. METHODS: We discuss strengths and weaknesses of measuring multiple different types of stigma including perceived, anticipated, experienced, perpetrated, internalized, and intersecting stigma as measured among key populations themselves, as well as attitudes or beliefs about key populations as measured among other groups. RESULTS: With the increasing recognition of the importance of stigma, consistent and validated stigma metrics for key populations are needed to monitor trends and guide immediate action. Evidence-based stigma interventions may ultimately be the key to overcoming the barriers to coverage and retention in life-saving antiretroviral-based HIV prevention and treatment programs for key populations. CONCLUSIONS: Moving forward necessitates the integration of validated stigma scales in routine HIV surveillance efforts, as well as HIV epidemiologic and intervention studies focused on key populations, as a means of tracking progress toward a more efficient and impactful HIV response.

Employment discrimination and HIV stigma: survey results from civil society organisations and people living with HIV in Africa.

The article presents findings from three surveys of people living with HIV (PLHIV) and civil society organisations about the experience of employment discrimination and stigma in the workplace. The work seeks to contribute to efforts by businesses and other organisations to effectively respond to the HIV epidemic within the world of work, and to deepen our understanding of the ways in which HIV stigma and employment discrimination persist in the workplace. The findings of global and regional surveys indicate the existence of high levels of employment discrimination based on HIV status worldwide, including forced disclosure of HIV status, exclusion in the workplace, refusals to hire or promote, and terminations of people known to be living with HIV. The survey findings show that employment discrimination based on HIV status is experienced in all African subregions. Country-level surveys conducted in Kenya and Zambia indicated that PLHIV face marked barriers to employment, including discrimination in hiring, loss of promotions, and termination because of HIV status. Additionally, large variances were found in the degree of support versus discrimination that employees living with HIV in those two countries received following their disclosure. The discussion emphasises the importance of the workplace as a site for intervention and behaviour change. To address this, we introduce a conceptual framework - the employment continuum - that maps multiple points of entry within the workplace to address HIV-related stigma and discrimination. Additional recommendations include: actions to ensure equal opportunity in hiring for PLHIV; ensuring that HIV testing is voluntary, never mandatory, and that disclosure is not necessary for employment; ensuring confidentiality of HIV status; communicating and enforcing HIV-related antidiscrimination policies; establishing support groups in the workplace; providing safe and confidential processes for resolving complaints of employment discrimination; and taking affirmative responsibility to verify that any job terminations are not the result of mistreatment or bias.