Prevalence and risk of burnout among HIV service providers in South Africa and Zambia: findings from the HPTN 071 (PopART) trial.

BACKGROUND: In the high disease burden and resource-constrained contexts of sub-Saharan Africa (SSA), health workers experience a range of psychosocial stressors that leave them vulnerable to developing burnout, which can reduce service quality and negatively impact their own health and wellbeing. As universal testing and treatment (UTT) for HIV scales up across SSA, we sought to understand the implications of this human resource-intensive approach to HIV prevention to inform decision-making about health workforce staffing and support needs. METHODS: Using the Maslach Burnout Inventory-Human Services Survey (MBI-HSS), we assessed the prevalence of three domains of burnout-emotional exhaustion, depersonalization, and personal accomplishment-among three cadres of health workers delivering health services in areas receiving a UTT intervention in Zambia and South Africa. These cadres included health facility workers (n = 478), community health workers (n = 159), and a study-specific cadre of community HIV care providers (n = 529). We used linear regression to assess risk factors associated with emotional exhaustion, the only domain with sufficient variation in our sample. RESULTS: The MBI-HSS was completed by 1499/2153 eligible participants (69.6% response rate). Less than 1% of health workers met Maslach's definition for burnout. All groups of health workers reported lower levels of emotional exhaustion than found in previous studies of this type (mean score scores ranged from 10.7 to 15.4 out of 54 across health cadres). Higher emotional exhaustion was associated with higher educational attainment (ßadj = 2.24, 95% CI 0.76 to 3.72), greater years providing HIV services (ßadj = 0.20, 95% CI 0.03 to 0.36), and testing negative for HIV at last HIV test (ßadj = - 3.88 - 95% CI 5.69 to - 2.07). Working as a CHW was significantly associated with lower emotional exhaustion (ßadj = - 2.52, 95% CI - 4.69 to - 0.35). Among all health workers, irrespective of HIV status, witnessing stigmatizing behaviors towards people living with HIV among their co-workers was associated with significantly increased emotional exhaustion (ßadj = 3.38, 95% CI 1.99 to 4.76). CONCLUSIONS: The low level of burnout detected among health workers is reassuring. However, it remains important to assess how UTT may affect levels of emotional exhaustion among health workers over time, particularly in the context of emerging global pandemics, as burnout may impact the quality of HIV services they provide and their own mental health and wellbeing. Interventions to reduce HIV stigma in health facilities may protect against emotional exhaustion among health workers, as well as interventions to increase mindfulness and resilience among health workers at risk of burnout. Trial registration ClinicalTrials.gov number: NCT01900977.

HIV and gender identity expression among transfeminine people in the Western Cape, South Africa - a thematic analysis of data from the HPTN 071 (PopART) trial.

INTRODUCTION: Transfeminine people in South Africa have a high HIV risk due to structural, behavioural, and psychosocial factors. Transfeminine people and feminine identifying men who have sex with men (MSM) are often conflated or grouped with transgender or MSM categories in HIV service programming, although they don't necessarily identify as either. We aimed to investigate gender expression among feminine identifying people who were assigned male at birth. We examined how local conceptualizations of sexuality and gender intersect with the key population label of 'transgender' imported into local HIV programming. METHODS: A qualitative cohort nested within the HPTN 071 (PopART) trial included longitudinal, in-depth interviews with eight transfeminine people (four who disclosed as living with HIV). Data were collected approximately every six weeks between January 2016 and October 2017. We used a combination of thematic analysis and case study descriptions to explore gender identification among participants. RESULTS: Of the eight participants, only one accepted 'transgender' as a label, and even she used varying terms at different times to describe her identity. For participants, a feminine identity included dressing in normatively feminine clothes; using feminine terms, pronouns and names; and adopting stereotypically feminine mannerisms. Participants would switch between typically feminine and masculine norms in response to contextual cues and audience. For example, some participants accepted identification as masculine gay men amongst their family members. Among peers, they expressed their identity through typically more effeminate gender characteristics, for example self-identifying as "femgay". With partners they often also took on a feminine identity role, for example identifying as women in sexual and romantic relationships (meaning they viewed and expressed themselves as the feminine partner in the relationship). CONCLUSIONS: Our findings are amongst the first exploratory and descriptive data of transfeminine people in South Africa. We show how transfeminine people navigate fluid gender identities that could pose a challenge for accessing and utilizing HIV services that are currently set up for transgender individuals or MSM. More work needs to be done to understand and respond to the diverse and shifting ways people experience their gender identities in this high HIV burden context.

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.

Coming of age with HIV: a temporal understanding of young women's experiences in Zambia.

Young perinatally-infected women living with HIV in Zambia grew up alongside antiretroviral therapy (ART) roll-out and expanding prevention programmes. We used Bonnington's temporal framework to understand how HIV impacted the experiences of these women over time. Data were drawn from two sequential studies with a cohort of young women living with HIV: a qualitative study in 2014-16 and an ethnographic study in 2017-18. Data from workshops, in-depth interviews, participant observation and diaries were analysed thematically, guided by three temporalities within the framework: everyday, biographical and epochal time. In everyday time, repetitive daily treatment-taking reminded young women of their HIV status, affecting relationships and leading to secrecy with ART. In biographical time, past events including HIV disclosure, experiences of illness, and loss shaped present experiences and future aspirations. Lastly, in epochal time, the women's HIV infection and their survival were intimately interlinked with the history of ART availability. The epochal temporal understanding leads us to extend Reynolds Whyte's notion of "biogeneration" to conceptualise these women, whose experiences of living with HIV are enmeshed with their biosocial environment. Support groups for young women living with HIV should help them to process biographical events, as well as supporting their everyday needs.

Exploring the feasibility and acceptability of integrating screening for gender-based violence into HIV counselling and testing for adolescent girls and young women in Tanzania and South Africa.

BACKGROUND: Gender-based violence (GBV) undermines HIV prevention and treatment cascades, particularly among women who report partner violence. Screening for violence during HIV testing, and prior to offering pre-exposure prophylaxis (PrEP) to HIV uninfected women, provides an opportunity to identify those at heightened HIV risk and greater potential for non-adherence or early discontinuation of PrEP. The paper describes our experience with offering integrated GBV screening and referral as part of HIV counselling and testing. This component was implemented within EMPOWER, a demonstration project offering combination HIV prevention, including daily oral PrEP, to young women in South Africa and Tanzania. METHODS: Between February 2017 and March 2018, a process evaluation was conducted to explore views, experiences and practices of stakeholders (study participants and study clinical staff) during implementation of the GBV screening component. This article assesses the feasibility and acceptability of the approach from multiple stakeholder perspectives, drawing on counselling session observations (n = 10), in-depth interviews with participants aged 16-24 (n = 39) and clinical staff (n = 13), and notes from debriefings with counsellors. Study process data were also collected (e.g. number of women screened and referred). Following a thematic inductive approach, qualitative data were analysed using qualitative software (NVivo 11). RESULTS: Findings show that 31% of young women screened positive for GBV and only 10% requested referrals. Overall, study participants accessing PrEP were amenable to being asked about violence during HIV risk assessment, as this offered the opportunity to find emotional relief and seek help, although a few found this traumatic. In both sites, the sensitive and empathetic approach of the staff helped mitigate distress of GBV disclosure. In general, the delivery of GBV screening in HCT proved to be feasible, provided that the basic principles of confidentiality, staff empathy, and absence of judgment were observed. However, uptake of linkage to further care remained low in both sites. CONCLUSION: Most stakeholders found GBV screening acceptable and feasible. Key principles that should be in place for young women to be asked safely about GBV during HIV counselling and testing included respect for confidentiality, a youth-friendly and non-judgmental environment, and a functioning referral network.

Universal HIV testing and treatment and HIV stigma reduction: a comparative thematic analysis of qualitative data from the HPTN 071 (PopART) trial in South Africa and Zambia.

Despite continued development of effective HIV treatment, expanded access to care and advances in prevention modalities, HIV-related stigma persists. We examine how, in the context of a universal HIV-testing and treatment trial in South Africa and Zambia, increased availability of HIV services influenced conceptualisations of HIV. Using qualitative data, we explore people's stigma-related experiences of living in 'intervention' and 'control' study communities. We conducted exploratory data analysis from a qualitative cohort of 150 households in 13 study communities, collected between 2016 and 2018. We found that increased availability of HIV-testing services influenced conceptualisations of HIV as normative (non-exceptional) and the visibility of people living with HIV (PLHIV) in household and community spaces impacted opportunities for stigma. There was a shift in community narratives towards individual responsibility to take up (assumingly) widely available service - for PLHIV to take care of their own health and to prevent onward transmission. Based on empirical data, we show that, despite a growing acceptance of HIV-related testing services, anticipated stigma persists through the mechanism of shifting responsibilisation. To mitigate the responsibilisation of PLHIV, heath implementers need to adapt anti-stigma messaging and especially focus on anticipated stigma.

Disclosure of PrEP use by young women in South Africa and Tanzania: qualitative findings from a demonstration project.

Investigating how young women disclose oral pre-exposure prophylaxis (PrEP) use is important given evidence that disclosure is associated with higher adherence. We report qualitative results on PrEP disclosure among young women in South Africa and Tanzania who participated in a PrEP demonstration project (EMPOWER). In total, 81 in-depth interviews were conducted with 39 young women aged 16-24 years-25 from Johannesburg and 14 from Mwanza-at approximately 3, 6 and/or 9 months post-enrolment. Analysis of data was thematic and inductive. Most Johannesburg participants were students in the inner-city; in Mwanza, all worked in recreational venues, occasionally engaging in sexual transactions with customers. A continuum of approaches was evident. Partner disclosure was common in Johannesburg but less so in Mwanza, where many partners were feared as judgemental and potentially violent. In both sites, participants commonly disclosed to family to secure support, and to friends and work colleagues to advocate about PrEP and encourage uptake among at-risk peers. Adherence clubs appeared helpful in building participants' skills and confidence to disclose, particularly in gender-inequitable sexual relationships. PrEP counselling for young women should focus on strengthening communication skills and helping develop strategies for safe disclosure.

Association between HIV stigma and antiretroviral therapy adherence among adults living with HIV: baseline findings from the HPTN 071 (PopART) trial in Zambia and South Africa.

OBJECTIVES: Adherence to antiretroviral therapy (ART) leads to viral suppression for people living with HIV (PLHIV) and is critical for both individual health and reducing onward HIV transmission. HIV stigma is a risk factor that can undermine adherence. We explored the association between HIV stigma and self-reported ART adherence among PLHIV in 21 communities in the HPTN 071 (PopART) trial in Zambia and the Western Cape of South Africa. METHODS: We conducted a cross-sectional analysis of baseline data collected between 2013 and 2015, before the roll-out of trial interventions. Questionnaires were conducted, and consenting participants provided a blood sample for HIV testing. Poor adherence was defined as self-report of not currently taking ART, missing pills over the previous 7 days or stopping treatment in the previous 12 months. Stigma was categorised into three domains: community, health setting and internalised stigma. Multivariable logistic regression was used for analysis. RESULTS: Among 2020 PLHIV self-reporting ever taking ART, 1888 (93%) were included in multivariable analysis. Poor ART adherence was reported by 15.8% (n = 320) of participants, and 25.7% (n = 519) reported experiencing community stigma, 21.5% (n = 434) internalised stigma, and 5.7% (n = 152) health setting stigma. PLHIV who self-reported previous experiences of community and internalised stigma more commonly reported poor ART adherence than those who did not (aOR 1.63, 95% CI 1.21 -2.19, P = 0.001 and aOR 1.31, 95% CI 0.96-1.79, P = 0.09). CONCLUSIONS: HIV stigma was associated with poor ART adherence. Roll-out of universal treatment will see an increasingly high proportion of PLHIV initiated on ART. Addressing HIV stigma could make an important contribution to supporting lifelong ART adherence.

OBJECTIFS: L'adhésion à la thérapie antirétrovirale (ART) conduit à la suppression virale pour les personnes vivant avec le VIH (PVVIH) et est essentielle à la fois pour la santé individuelle et pour réduire la transmission du VIH. La stigmatisation du VIH est un facteur de risque qui peut compromettre l'adhésion. Nous avons exploré l'association entre la stigmatisation du VIH et l'adhésion autodéclarée à l'ART chez les PVVIH dans 21 communautés dans l'essai HPTN 071 (PopART) en Zambie et dans le Western Cape en Afrique du Sud. MÉTHODES: Nous avons effectué une analyse transversale des données de base collectées entre 2013-2015, avant le déploiement des interventions d'essai. Des questionnaires ont été réalisés et les participants consentants ont fourni un échantillon de sang pour le dépistage du VIH. Une mauvaise adhésion a été définie comme l'autodéclaration de ne pas prendre actuellement l'ART, d'omettre des comprimés au cours des 7 jours précédents ou d'arrêter le traitement au cours des 12 mois précédents. La stigmatisation a été classée en trois domaines: communautaire, en milieu de santé et stigmatisation intériorisée. Une régression logistique multivariée a été utilisée pour l'analyse. RÉSULTATS: Parmi les 2.020 PVVIH autodéclarant avoir déjà pris un ART, 1.888 (93%) ont été inclus dans l'analyse multivariée. Une mauvaise adhésion à l'ART a été signalée par 15,8% (n = 320) des participants, 25,7% (n = 519) ont déclaré avoir subi une stigmatisation communautaire, 21,5% (n = 434) une stigmatisation internalisée et 5,7% (n = 152) une stigmatisation en milieu de santé. Les PVVIH qui ont auto-déclaré des expériences antérieures de stigmatisation communautaire et intériorisée ont plus souvent rapporté une mauvaise adhésion à l'ART que ceux qui ne l'ont pas fait (aOR 1,63 ; IC95%: 1,21-2,19 ; P = 0,001 et aOR 1,31 ; IC95%: 0,96-1,79 ; P = 0,09). CONCLUSIONS: La stigmatisation du VIH était associée à une mauvaise adhésion à l'ART. Le déploiement du traitement universel verra une proportion de plus en plus élevée de PVVIH initiées à l'ART. Lutter contre la stigmatisation du VIH pourrait apporter une contribution importante au soutien de l'adhésion à l'ART au cours de la vie. NUMÉRO D'ESSAI CLINIQUE: NCT01900977.

Stigma and HIV service access among transfeminine and gender diverse women in South Africa - a narrative analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial.

BACKGROUND: Transgender women have a disproportionately high HIV prevalence compared to cisgender women and men who have sex with men, which puts them at risk of HIV-related stigma (Baral SD et al., Lancet Infect Dis, 13;3, 2013). People whose gender identities are in tension with dominant social norms (including transgender women) often also experience gender identity-related stigma. There has been increasing attention to transgender people in HIV research and interventions. However, very little research has been done in sub-Saharan African countries. METHODS: We conducted a qualitative cohort study which included eight transfeminine and/or gender diverse women (four living with HIV) in Western Cape, South Africa, for a follow-up period of 12-18 months. Using a narrative analysis approach, we set out to understand how transfeminine and gender diverse participants in the cohort anticipated, experienced and internalised HIV stigma and gender identity stigma, and how these stigmas affected HIV service access. RESULT: We found that participants reported anticipated, experienced, and internalised stigma relating both to their gender identity and to living with HIV. Participants reported inconsistent uptake of antiretroviral therapy (ART) services (including ART initiation and adherence) that they linked to stigma. We also found that gender diverse women and transfeminine women are challenged with other stigmatising social identities, like being a sex worker, drug user and/or a man (or assigned male sex at birth) who have sex with men (MSM). We use the terms 'transfeminine' and 'gender diverse' as terms that are inclusive of gender variant people who were all assigned male sex at birth and identify as women in some or all aspects of their lives. The persons in our study also showed gender identifications that were fluid and sometimes varied in different contexts and situations, therefore gender identity and sexual identity were often conflated for these individuals. Participants managed high levels of reported stigma by drawing on social support networks like families, friends and peers. CONCLUSION: Our study provides exploratory work on how stigma may affect HIV services uptake amongst gender diverse women and transfeminine women in South Africa. We recommend future studies to further explore the unique HIV risks of gender diverse individuals. TRIAL REGISTRATION: DOH-27-0513-4253 .

"You talk about problems until you feel free": South African adolescent girls' and young women's narratives on the value of HIV prevention peer support clubs.

BACKGROUND: Daily oral pre-exposure prophylaxis (PrEP) can reduce HIV infection in adolescent girls and young women if used consistently during periods of risk. The EMPOWER study evaluated peer-based clubs incorporating an empowerment curriculum offered to adolescent girls and young women (16-24 years) in South Africa and Tanzania for adherence support. METHODS: Using serial in-depth interviews (n = 33), we assessed the benefits and challenges of club attendance among 13 EMPOWER participants in the Johannesburg site who were randomised to clubs. We used a summary matrix of coded data to support a narrative, case-based analysis. Four case studies are presented. RESULTS: Club participants reported benefits such as increased self-esteem and self-efficacy, reduced isolation, and greater insight into gender-based violence and strategies to address it. Day-to-day PrEP adherence was not the only topic discussed in clubs; participants also appreciated the safe space for sharing problems (such as relationship conflict and PrEP stigma) and found interactive exercises helpful in improving partner communication. CONCLUSIONS: Findings support the use of peer-based clubs using a structured empowerment approach, which may offer valuable PrEP initiation support to adolescent girls and young women in settings with high HIV and gender-based violence prevalence. TRIAL REGISTRATION: Pan African Clinical Trials Registry PACTR202006754762723 , 5 April  2020, retrospectively registered.

The Health Stigma and Discrimination Framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas.

Stigma is a well-documented barrier to health seeking behavior, engagement in care and adherence to treatment across a range of health conditions globally. In order to halt the stigmatization process and mitigate the harmful consequences of health-related stigma (i.e. stigma associated with health conditions), it is critical to have an explicit theoretical framework to guide intervention development, measurement, research, and policy. Existing stigma frameworks typically focus on one health condition in isolation and often concentrate on the psychological pathways occurring among individuals. This tendency has encouraged a siloed approach to research on health-related stigmas, focusing on individuals, impeding both comparisons across stigmatized conditions and research on innovations to reduce health-related stigma and improve health outcomes. We propose the Health Stigma and Discrimination Framework, which is a global, crosscutting framework based on theory, research, and practice, and demonstrate its application to a range of health conditions, including leprosy, epilepsy, mental health, cancer, HIV, and obesity/overweight. We also discuss how stigma related to race, gender, sexual orientation, class, and occupation intersects with health-related stigmas, and examine how the framework can be used to enhance research, programming, and policy efforts. Research and interventions inspired by a common framework will enable the field to identify similarities and differences in stigma processes across diseases and will amplify our collective ability to respond effectively and at-scale to a major driver of poor health outcomes globally.

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.

A systematic review of selected human rights programs to improve HIV-related outcomes from 2003 to 2015: what do we know?

BACKGROUND: Repressive legal environments and widespread human rights violations act as structural impediments to efforts to engage key populations at risk of HIV infection in HIV prevention, care, and treatment efforts. The identification and scale-up of human rights programs and rights-based interventions that enable coverage of and retention in evidence-based HIV prevention and treatment approaches is crucial for halting the epidemic. METHODS: We conducted a systematic review of studies that assessed the effectiveness of human rights interventions on improving HIV-related outcomes between 1/1/2003-28/3/2015 per PRISMA guidelines. Studies of any design that sought to evaluate an intervention falling into one of the following UNAIDS' key human rights program areas were included: HIV-related legal services; monitoring and reforming laws, policies, and regulations; legal literacy programs; sensitization of lawmakers and law enforcement agents; and training for health care providers on human rights and medical ethics related to HIV. RESULTS: Of 31,861 peer-reviewed articles and reports identified, 23 were included in our review representing 15 different populations across 11 countries. Most studies (83%) reported a positive influence of human rights interventions on HIV-related outcomes. The majority incorporated two or more principles of the human rights-based approach, typically non-discrimination and accountability, and sought to influence two or more elements of the right to health, namely availability and acceptability. Outcome measures varied considerably, making comparisons between studies difficult. CONCLUSION: Our review revealed encouraging evidence of human rights interventions enabling a comprehensive HIV response, yet critical gaps remain. The development of a research framework with standardized indicators is needed to advance the field. Promising interventions should be implemented on a larger scale and rigorously evaluated. Funding for methodologically sound evaluations of human rights interventions should match the demand for human rights-based and structural approaches to protect those most vulnerable from HIV infection.

Reducing stigma and discrimination to improve child health and survival in low- and middle-income countries: promising approaches and implications for future research.

The social processes of stigmatization and discrimination can have complex and devastating effects on the health and welfare of families and communities, and thus on the environments in which children live and grow. The authors conducted a literature review to identify interventions for reducing the stigma and discrimination that impede child health and well-being in low- and middle-income countries, with a focus on nutrition, HIV/AIDS, neonatal survival and infant health, and early child development. Despite broad consensus on the importance of stigma and discrimination as barriers to access and uptake of health information and services, the authors found a dearth of research and program evaluations directly assessing effective interventions in the area of child health except in the area of reducing HIV-related stigma and discrimination. While the literature demonstrates that poverty and social exclusion are often stigma-laden and impede adult access to health information and services, and to education relevant to family planning, child rearing, nutrition, health promotion, and disease prevention, the child health literature does not document direct connections between these known mediators of child health and the stigmatization of either children or their caregivers. The child health field would greatly benefit from more research to understand and address stigma as it relates to child health and well-being. The authors suggest applying a framework, adapted from the HIV stigma field, to direct future research and the adaptation of existing strategies to reduce HIV-related stigma and discrimination to address social and health-related stigmas affecting children and their families.

Associations between HIV stigma and health-related quality-of-life among people living with HIV: cross-sectional analysis of data from HPTN 071 (PopART).

People living with HIV (PLHIV) report lower health-related quality-of-life (HRQoL) than HIV-negative people. HIV stigma may contribute to this. We explored the association between HIV stigma and HRQoL among PLHIV. We used cross-sectional data from 3991 randomly selected PLHIV who were surveyed in 2017-2018 for HPTN 071 (PopART), a cluster randomised trial in Zambia and South Africa. Participants were 18-44 years, had laboratory-confirmed HIV infection, and knew their status. HRQoL was measured using the EuroQol-5-dimensions-5-levels (EQ-5D-5L) questionnaire. Stigma outcomes included: internalised stigma, stigma experienced in the community, and stigma experienced in healthcare settings. Associations were examined using logistic regression. Participants who had experienced community stigma (n = 693/3991) had higher odds of reporting problems in at least one HRQoL domain, compared to those who had not (adjusted odds ratio, aOR: 1.51, 95% confidence interval, 95% Cl: 1.16-1.98, p = 0.002). Having experienced internalised stigma was also associated with reporting problems in at least one HRQoL domain (n = 552/3991, aOR: 1.98, 95% CI: 1.54-2.54, p < 0.001). However, having experienced stigma in a healthcare setting was less common (n = 158/3991) and not associated with HRQoL (aOR: 1.04, 95% CI: 0.68-1.58, p = 0.850). A stronger focus on interventions for internalised stigma and stigma experienced in the community is required.

Validation of the Cancer Stigma Scale in Nepalese Women.

BACKGROUND: Cancer stigma is known to have an adverse impact on cancer patients as well as vulnerable groups who are at risk of developing cancer. In Nepal, there is no validated instrument for assessing cancer stigma and there has been relatively little research examining the stigmatization of cancer among the Nepalese population. OBJECTIVE: We aimed to validate the Cancer Stigma Scale (CASS) among apparently healthy Nepali women. METHODS: We interviewed 426 Nepali women after the translation, back-translation, and cross-cultural adaptation of the CASS into Nepali. We assessed internal consistency using Cronbach's alpha and assessed model fit using confirmatory component analysis. RESULTS: The Nepali CASS had satisfactory internal reliability, Cronbach's alpha of the overall scale and six components was 0.88 and 0.70-0.89, respectively. Confirmatory factor analysis confirmed the six-factor structure (RMSEA = 0.074, GFI = 0.864, AGFI = 0.825, CFI = 0.901, NFI = 0.866, χ2/df=3.341). Having no formal education was associated with higher levels of stigma related to avoiding cancer patients and attributing cancer to personal responsibility. CONCLUSIONS: The Nepali CASS demonstrated sufficient internal consistency, reliability, and model fit indices, making it suitable for assessing cancer stigma among Nepali people.

HIV and gender identity expression among transfeminine women in the Western Cape, South Africa - a thematic analysis of data from the HPTN 071 (PopART) trial.

Introduction: Transfeminine women in South Africa have a high HIV risk due to structural, behavioural, and psychosocial factors. Transfeminine women and feminine identifying men who have sex with men (MSM) are often conflated or grouped with transgender or MSM categories in HIV service programming, although they don't necessarily identify as either. We aimed to investigate gender expression among feminine identifying people who were assigned male at birth. We examined how local conceptualizations of sexuality and gender intersect with the key population label of 'transgender' imported into local HIV programming. Methods: A qualitative cohort nested within the HPTN 071 (PopART) trial included longitudinal, in-depth interviews with eight transfeminine women (four who disclosed as living with HIV). Data were collected approximately every six weeks between January 2016 and October 2017. We discuss gender identification presented in participants' daily lives and in relation to HIV service access. Results: Of the eight participants, only one accepted 'transgender' as a label, and even she used varying terms at different times to describe her identity. For participants, a feminine identity included dressing in normatively feminine clothes; using feminine terms, pronouns and names; and adopting stereotypically feminine mannerisms. Participants would switch between typically feminine and masculine norms in response to contextual cues and audience. For example, some participants accepted identification as masculine gay men amongst their family members, but amongst peers, they expressed a more effeminate identity and with partners they took on a feminine identity. Conclusions: Our findings are amongst the first exploratory and descriptive data of transfeminine women in South Africa. We show how transfeminine women navigate fluid gender identities that could pose a challenge for accessing and utilizing HIV services that are currently set up for transgender individuals or MSM. More work needs to be done to understand and respond to the diverse and shifting ways people experience their gender identities in this high HIV burden context.

Association between cancer stigma and cervical cancer screening uptake among women of Dhulikhel and Banepa, Nepal.

BACKGROUND: Cervical cancer ranks as the most common cancer among Nepalese women with a high incidence and mortality. Despite evidence that effective screening programs reduce disease burden, screening services are under-utilized. Cancer stigma can be a major barrier to cervical cancer screening uptake among Nepalese women. OBJECTIVES: This study assessed the association between cancer stigma and cervical cancer screening uptake among women residing in semi-urban areas of Kavrepalanchok district (Dhulikhel and Banepa), Nepal. METHODS: We conducted a cross-sectional study among 426 women aged 30-60 years using telephone interview method from 15th June to 15th October 2021. A validated Cancer Stigma Scale (CASS) was used to measure cancer stigma and categorized women as presence of cancer stigma if the mean total score was greater than three. We obtained information on cervical cancer screening uptake through self-reported responses. Univariable and multivariable logistic regression were performed to assess the association between cancer stigma and cervical cancer screening uptake. We adjusted socio-demographic: age, ethnicity, occupation, religion and education, and reproductive health variables: parity, family planning user, age of menarche and age at first sexual intercourse during multivariable logistic regression. RESULTS: Twenty-three percent of women had cancer stigma and 27 percent reported that they had ever been screened for cervical cancer. The odds of being screened was 0.23 times lower among women who had stigma compared to those who had no stigma (95% CI: 0.11-0.49) after adjusting for confounders: age, ethnicity, occupation, religion, education, parity, contraceptive use, age of menarche and age at first sexual intercourse. CONCLUSION: Women residing in semi-urban areas of Nepal and had cancer stigma were less likely to have been screened for cervical cancer. De-stigmatizing interventions may alleviate cancer stigma and contribute to higher uptake of cervical cancer screening.

Measuring quality of life in rural Uganda: reliability and validity of summary scores from the medical outcomes study HIV health survey (MOS-HIV).

PURPOSE: Summary scores derived from the medical outcomes study HIV health survey (MOS-HIV) are used to assess treatment impacts among HIV-infected patients in Western settings, but have yet to be validated in rural, African settings. We examined the reliability, validity and responsiveness of scores among a prospective cohort of 947 HIV-1-infected adults initiating antiretroviral therapy between May 2003 and May 2004 in rural Uganda. METHODS: Physical (PHS) and mental health (MHS) summary scores were developed from baseline MOS-HIV sub-domains using exploratory factor analysis. Construct and discriminant validity were established by comparing mean summary scores across known groups of sociodemographic, clinical and health status characteristics. Effect sizes were calculated to assess responsiveness to therapy. RESULTS: Reliability of the PHS and MHS scores was 0.79 and 0.85, respectively. Mean baseline PHS and MHS scores varied significantly by CD4 cell count, HIV viral load, WHO stage of disease and Karnofsky performance status scores. By 12 months on antiretroviral therapy, PHS and MHS scores improved by 14.6 points (P < 0.001) and 13.9 points (P < 0.001), respectively. CONCLUSIONS: PHS and MHS scores can be derived from the MOS-HIV and used to assess health status among cohorts of patients taking antiretroviral therapy in rural Uganda.