Systematic review and quantitative and qualitative comparative analysis of interventions to address HIV-related stigma and discrimination.

A strong global commitment exists to eliminate HIV-related stigma and discrimination, and multiple strategies to reduce or eliminate stigma and discrimination have been tried. Using a PICOTS framework and applying the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) criteria, we undertook a systematic review to determine the success of interventions aiming to address internalized stigma, stigma and discrimination in healthcare, and at the legal or policy level, and to identify their critical success factors. Random effects meta-analyses summarized results wherever possible. We carried out a component analysis to identify and characterize successful interventions. Internalized stigma interventions were diverse: across all studies, we found a reduction of stigma but it was not statistically significant [standardized mean difference (SMD) 0.56; confidence interval (CI) 0.31-1.02; 17 studies). For interventions to address stigma and discrimination in healthcare settings, effect estimates varied considerably but most studies showed positive effects (SMD 0.71; CI 0.60-0.84, 8 studies). Boosted regression analyses found that a combined approach comprising education, counseling, community participation, support person, and access to a HIV specialist often yielded success. Studies of efforts to address stigma and discrimination through law and policy documented, mostly qualitatively, the effect of court cases and directives. Across a range of settings and populations, promising interventions have been identified that, through diverse pathways, have positively impacted the types of stigma and discrimination studied. This evidence base must be built upon and brought to scale to help reach global HIV-related targets and, most importantly, improve the health and quality of life of people with HIV.

Lived experiences of people living with HIV-A qualitative exploration on the manifestation, drivers, and effects of internalized HIV stigma within the Malawian context.

INTRODUCTION: HIV-related internalized stigma remains a major contributor to challenges experienced when accessing and providing HIV diagnosis, care and treatment services. It is a key barrier to effective prevention, treatment and care programs. This study investigated experiences of internalized stigma among people living with HIV in Malawi. METHODOLOGY: A participatory cross-sectional study design of participants from eight districts across the three administrative regions of Malawi. Data were collected using Key Informant Interviews (n = 22), Focus Group Discussions (n = 4) and life-stories (n = 10). NVIVO 12 software was used for coding applying both deductive and inductive techniques. Health Stigma and Discrimination Framework was used as a theoretical and analytical framework during data analysis. RESULTS: Overt forms of stigma and discrimination were more recognizable to people living with HIV while latent forms, including internalized stigma, remained less identifiable and with limited approaches for mitigation. In this context, manifest forms of HIV-related stigma intersected with latent forms of stigma as people living with HIV often experienced both forms of stigma concurrently. The youths, HIV mixed-status couples and individuals newly initiated on ART were more susceptible to internalized stigma due to their lack of coping mechanism, unavailability of mitigation structures, and lack of information. Broadly, people living with HIV found it difficult to identify and describe internalized stigma and this affected their ability to recognize it and determine an appropriate course of action to deal with it. CONCLUSION: Understanding the experiences of internalized stigma is key to developing targeted and context specific innovative solutions to this health problem.

Frameworks and measures for HIV-related internalized stigma, stigma and discrimination in healthcare and in laws and policies: a systematic review.

INTRODUCTION: There is strong global commitment to eliminate HIV-related stigma, and work in this area continues to evolve. Wide variation exists in frameworks and measures used. METHODS: Building on the existing knowledge syntheses, we carried out a systematic review to identify frameworks and measures aiming to understand or assess internalized stigma, stigma and discrimination in healthcare, and in law and policy. The review addressed two questions: Which conceptual frameworks have been proposed to assess internalized stigma, stigma and discrimination experienced in healthcare settings, and stigma and discrimination entrenched in national laws and policies? Which measures of these different types of stigma and discrimination have been proposed and what are their descriptive properties? Searches, completed on 6 May 2021, cover publications from 2008 onwards. The review is registered in PROSPERO (CRD42021249348), the protocol incorporated stakeholder input, and the data are available in the Systematic Review Data Repository. RESULTS AND DISCUSSION: Sixty-nine frameworks and 50 measures met the inclusion criteria. Critical appraisal figures and detailed evidence tables summarize these resources. We established a compendium of frameworks and a catalogue of measures of HIV-related stigma and discrimination. Seventeen frameworks and 10 measures addressed at least two of our focus domains, with least attention to stigma and discrimination in law and policy. The lack of common definitions and variability in scope and structure of HIV-related frameworks and measures creates challenges in understanding what is being addressed and measured, both in relation to stigma and efforts to mitigate or reduce its harmful effects. Having comparable data is essential for tracking change over time within and between interventions. CONCLUSIONS: This systematic review provides an evidence base of current understandings of HIV-related stigma and discrimination and how further conceptual clarification and increased adaptation of existing tools might help overcome challenges across the HIV care continuum. With people living with HIV at the centre, experts from different stakeholder groups could usefully collaborate to guide a more streamlined approach for the field. This can help to achieve global targets and understand, measure and help mitigate the impact of different types of HIV-related stigma on people's health and quality of life.

Situating HIV Stigma in Health Facility Settings: A Qualitative Study of Experiences and Perceptions of Stigma in 'Clinics' among Healthcare Workers and Service Users in Zambia.

The study focused on the representations, processes and effects of HIV stigma for healthcare workers living with HIV within health facilities in Zambia. A descriptive study design was deployed. A total of 56 health workers and four service user participants responded to a structured questionnaire (n = 50) or took part in key informant interviews (n = 10) in five high HIV-prevalence provinces. Most participants did not disclose if they were living with HIV, except for four participants who responded to the questionnaire and were selected for being open about living with HIV. Semi-structured interviews were carried out with health workers in key government health facility positions. The questions were standardized and used a Likert scale. Descriptive statistical and thematic analyses were applied to the data. Results show that antiretroviral treatment (ART) has an impact on stigma reduction. Almost half the participants agreed that treatment is reducing levels of HIV stigma. However, fears of exposure of HIV status and labelling and judgemental attitudes persist. No comprehensive stigma reduction policies and guidelines in healthcare facilities were mentioned. Informal flexible systems to deliver HIV services were in place for health workers living with HIV, illustrating how stigma can be quietly navigated. Lack of confidentiality in healthcare facilities plays a role in fuelling disclosure issues and hampering access to testing and treatment. Stigma reduction training needs standardization. Further, codes of conduct for 'stigma-free healthcare settings' should be developed.

Searching for the Second R in Sexual and Reproductive Health and Rights.

Sexual and reproductive health and rights have gained prominence in the HIV response. The role of sexual and reproductive health in underpinning a successful approach to HIV prevention, treatment, care, and services has increasingly been recognized. However, the "second R," referring to sexual and reproductive rights, is often neglected. This leads to policies and programs which both fail to uphold and fulfill these rights and which fail to meet the needs of those most affected by HIV by neglecting to take account of the human right-based barriers and challenges they face. In this commentary, the authors draw on the approach and practical experiences of the Link Up program, and the findings of a global consultation led for and by young people living with and most affected by HIV, to present a five-point framework to improve programming and health outomces by better protecting, respecting, and fulfilling the sexual health and reproductive rights of young people living with and most vulnerable to HIV.

Linking Sexual and Reproductive Health and Rights and HIV Services for Young People: The Link Up Project.

Sexual health and access to services are a pressing need for young people. This article introduces Link Up, a 3-year project in three African and two Asian countries, to enable and scale up access to integrated HIV services and sexual and reproductive health and rights for marginalized young people. The young people we worked with in this project included young men who have sex with men, young sex workers, young people who use drugs, young transgender people, young homeless people, and other vulnerable young people. The research and programmatic activities of Link Up, as illustrated in this Supplement, have highlighted the importance of recognizing and engaging with diversity among young people to improve access to services and outcomes protecting their health and human rights.

Stigma Reduction Training Improves Healthcare Provider Attitudes Toward, and Experiences of, Young Marginalized People in Bangladesh.

PURPOSE: Working with health providers to reduce HIV stigma in the healthcare setting is an important strategy to improve service utilization and quality of care, especially for young people who are sexually active before marriage, are sexual minorities, or who sell sex. A stigma reduction training program for health providers in Bangladesh was evaluated. METHODS: A cohort of 300 healthcare providers were given a self-administered questionnaire, then attended a 2-day HIV and sexual and reproductive health and rights training (including a 90-minute session on stigma issues). Six months later, the cohort repeated the survey and participated in a 1-day supplemental training on stigma, which included reflection on personal values and negative impacts of stigma. A third survey was administered 6 months later. A cross-sectional survey of clients age 15-24 years was implemented before and after the second stigma training to assess client satisfaction with services. RESULTS: Provider agreement that people living with HIV should be ashamed of themselves decreased substantially (35.3%-19.7%-16.3%; p < .001), as did agreement that sexually active young people (50.3%-36.0%-21.7%; p < .001) and men who have sex with men (49.3%-38.0%-24.0%; p < .001) engage in "immoral behavior." Young clients reported improvement in overall satisfaction with services after the stigma trainings (63.5%-97.6%; p < .001). CONCLUSIONS: This study indicates that a targeted stigma reduction intervention can rapidly improve provider attitudes and increase service satisfaction among young people. More funding to scale up these interventions is needed.

Experiences of stigma among women living with HIV attending sexual and reproductive health services in Kenya: a qualitative study.

BACKGROUND: Researchers have widely documented the pervasiveness of HIV stigma and discrimination, and its impact on people living with HIV. Only a few studies, however, have analysed the perceptions of women living with HIV accessing sexual and reproductive health (SRH) services. This study explores the experiences of stigma of HIV-positive clients attending family planning and post-natal services and implications for service use and antiretroviral therapy (ART) adherence. Our aim was to gain a better understanding of the impact of various dimensions of stigma on service use and ART adherence among HIV clients in order to inform the response of integrated SRH services. METHODS: In-depth interviews were conducted with 48 women living with HIV attending SRH services in two districts in Kenya. Data were coded using Nvivo 8 and analysed using a thematic analysis approach. RESULTS: Findings show that many women living with HIV report high levels of anticipated stigma, resulting in a desire to hide their status from family and friends for fear of being discriminated against. Many women feared desertion following disclosure of their positive status to partners. Consequently some women preferred to hide their status and adhere to HIV treatment in secret. However, the majority of study participants attending postnatal care (PNC) services also revealed that anticipated stigma does not adversely affect their HIV drug uptake and ART adherence, as their drive to live outweighs their fear of stigma. Our findings also seem to suggest a preference for specialist HIV services by some family planning (FP) clients because of better confidentiality and reduced opportunities for unwanted disclosure that could lead to stigma. CONCLUSIONS: The findings highlight that anticipated stigma leading to low disclosure is widespread and sometimes reinforced by health providers' actions and facility layout (contributing to enacted stigma). However, the motivation to stay healthy and look after the children appears in many cases to override fears of stigma related to ART adherence in our client-based sample.

'The intention may not be cruel... but the impact may be': understanding legislators' motives and wider public attitudes to a draft HIV Bill in Malawi.

OBJECTIVES: The law in relation to HIV has prominence in the formation and regulation of moral norms-in regard to human rights, and in regard to criminalisation, the policing of sexuality and intimate behaviours, and the production of stigma. The research focuses on the potential and impotence of the law to govern for, and enable, the human right to health in the context of HIV in Malawi. METHODS: This one-country qualitative case study (Malawi) action research involved data collection during a 6-month period (October 2010-March 2011). Datasets include interviews with law commissioners (n=10), opinion leaders (n=22), life story participants who were people living with and closely affected by HIV (n=20), reflections of the action research team (n=6), and a review of the proposed HIV and AIDS (Prevention and Management) Bill, legal and policy documents. RESULTS: The analysis of the perspectives of the law commissioners, who formed the Special Law Commission and drafted the Bill, revealed that stigma was consciously invoked to delineate social norms and guide governance of notions of personal responsibility. The analysis of the perspectives of the life story participants, whose lives would be most directly impacted if these provisions came into force, reveals the extent to which the stigma associating criminality and HIV is falling on fertile ground through its engagement and generation of internalised stigma; unearthing an uneasy link between stigma and the law in response to HIV in Malawi. DISCUSSION: The results indicated that the proposed HIV Bill in Malawi manifests a tension between intention and impact. By incorporating criminal sanctions as part of the proposed HIV Bill, the lawmakers actively seek to use stigma to shape social attitudes and attempt to guide normative behaviour.

Optimising the cost and delivery of HIV counselling and testing services in Kenya and Swaziland.

BACKGROUND: Approaches to HIV counselling and testing (HCT) within low-resource high HIV prevalence settings have shifted over the years from primarily client-initiated approaches to provider initiated. As part of an ongoing programme science research agenda, we examine the relative costs of provider-initiated testing and counselling (PITC) services compared with voluntary counselling and testing (VCT) services in the same health facilities in two low-resource settings: Kenya and Swaziland. METHODS: Annual financial and economic costs and output measures were collected retrospectively from 28 health facilities. Total annual costs and average costs per client counselled and tested (C&T), and HIV-positive clients identified, were estimated. RESULTS: VCT remains the predominant mode of HCT service delivery across both countries. However, unit cost per client C&T and per person testing HIV positive is lower for PITC than VCT across all facility types in Kenya, but the picture is mixed in Swaziland. Average cost per client C&T ranged from US $4.81 to US $6.11 in Kenya, US $6.92 to US $13.51 in Swaziland for PITC, and from US $5.05 to US $16.05 and US $8.68 to US $19.32 for VCT in Kenya and Swaziland, respectively. CONCLUSIONS: In the context of significant policy interest in optimising scarce HIV resources, this study demonstrates that there may be potential for substantial gains in efficiency in the provision of HCT services in both Kenya and Swaziland. However, considerations of how to deliver services efficiently need to be informed by local contextual factors, such as prevalence, service demand and availability of human resources.

Measuring for change: a new research initiative by and for people living with HIV.

Several organizations have banded together to create the People Living with HIV Stigma Index. In this article, which is based on a presentation at a concurrent session at the conference, Lucy Stackpool-Moore and Anandi Yuvaraj describe the purpose of the index and how it was developed. The authors believe that the index provides a real opportunity to measure, understand and advocate effectively to improve policies and programs and to make a real difference in the lives of people living with HIV.