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.

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.

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.

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.

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.

Removing the societal and legal impediments to the HIV response: An evidence-based framework for 2025 and beyond.

Societal and legal impediments inhibit quality HIV prevention, care, treatment and support services and need to be removed. The political declaration adopted by UN member countries at the high-level meeting on HIV and AIDS in June 2021, included new societal enabler global targets for achievement by 2025 that will address this gap. Our paper describes how and why UNAIDS arrived at the societal enabler targets adopted. We conducted a scoping review and led a participatory process between January 2019 and June 2020 to develop an evidence-based framework for action, propose global societal enabler targets, and identify indicators for monitoring progress. A re-envisioned framework called the '3 S's of the HIV response: Society, Systems and Services' was defined. In the framework, societal enablers enhance the effectiveness of HIV programmes by removing impediments to service availability, access and uptake at the societal level, while service and system enablers improve efficiencies in and expand the reach of HIV services and systems. Investments in societal enabling approaches that remove legal barriers, shift harmful social and gender norms, reduce inequalities and improve institutional and community structures are needed to progressively realize four overarching societal enablers, the first three of which fall within the purview of the HIV sector: (i) societies with supportive legal environments and access to justice, (ii) gender equal societies, (iii) societies free from stigma and discrimination, and (iv) co-action across development sectors to reduce exclusion and poverty. Three top-line and 15 detailed targets were recommended for monitoring progress towards their achievement. The clear articulation of societal enablers in the re-envisioned framework should have a substantial impact on improving the effectiveness of core HIV programmes if implemented. Together with the new global targets, the framework will also galvanize advocacy to scale up societal enabling approaches with proven impact on HIV outcomes.

Feasibility, Acceptability and Preliminary Efficacy of Tikambisane ('Let's Talk to Each Other'): A Pilot Support Group Intervention for Adolescent Girls Living With HIV in Zambia.

BACKGROUND: In Zambia, 84,959 adolescent girls and young women (AGYW) aged 15-24 are currently living with HIV. We explored the feasibility and acceptability of a 6-session, curriculum-based support group intervention designed to address key concerns of AGYW living with HIV. SETTING: Urban Zambia. METHODS: Surveys and in-depth interviews were collected pre- and post-intervention from participants enrolled from 2 health facilities. Eight participant observations of sessions were conducted. Descriptive statistics at baseline were reported only for AGYW who participated in the intervention (N = 21), while analyses comparing baseline and endline outcome measures were restricted to participants who had data at both time points (N = 14). RESULTS: Support groups were feasible to conduct and acceptable to participants. Co-facilitation by an adult counselor and peers living with HIV raised confidence about session content. Sessions on antiretroviral therapy (ART), disclosure and stigma, and grief and loss were most in demand. We did not observe significant differences in key outcome measures between baseline and follow-up. However, qualitative data supported the positive impact of the intervention on ART adherence and hope for the future following the intervention among our participants. CONCLUSION: A short-term, structured support group series holds promise for helping AGYW living with HIV safely navigate a complex time in their lives.

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.

Is HIV index testing and partner notification safe for adolescent girls and young women in low- and middle-income countries?

INTRODUCTION: While HIV index testing and partner notification (PN) services have the potential to reach adolescent girls and young women (AGYW) aged 15 to 24 and their sexual partners in need of HIV testing services, the potential social harms have not yet been studied. This commentary highlights the risks of this approach, including intimate partner violence (IPV), stigma and discrimination, and outlines an urgent research agenda to fully understand the potential harms of PN for AGYW, calling for the development of mitigation strategies. DISCUSSION: A substantial evidence base exists demonstrating the feasibility, acceptability and effectiveness of index testing and partner notification for adults aged 18 years and older in low- and middle-income countries (LMICs), particularly for men, and for adults who are married/cohabiting and referring a current sexual partner. AGYW who are most vulnerable to HIV infection in LMICs do not reflect these demographics. Instead, they are often in age-disparate partnerships, have limited negotiating power within relationships, experience high rates of violence and face economic challenges that necessitate transactional sex. PN services may be particularly difficult for adolescent girls under 18 who face restrictions on their decision making and are at increased risk of rape. Adolescent girls may also face coercion to notify partners due to unequal power dynamics in the provider-adolescent client relationship, as well as judgemental attitudes towards adolescent sexual activity among providers. CONCLUSIONS: As index testing and PN with AGYW is already being rolled out in some LMICs, research is urgently needed to assess its feasibility and acceptability. Implementation science studies should assess the availability, accessibility, acceptability and quality of HIV PN services for AGYW. Qualitative studies and routine monitoring with age-disaggregated data are critical to capture potential social harms, PN preferences and support needs for AGYW aged 15 to 17, 18 to 20 and 21 to 24. To mitigate potential harms, PN methods should prioritize confidentiality and avoidance of adverse outcomes. Healthcare providers should be trained to conduct routine enquiry for IPV and provide first-line support. Support services for AGYW living with HIV and survivors of violence should be implemented alongside HIV PN.

The effect of universal testing and treatment on HIV stigma in 21 communities in Zambia and South Africa.

OBJECTIVES: To assess the impact of a combination HIV prevention intervention including universal testing and treatment (UTT) on HIV stigma among people living with HIV, and among community members and health workers not living with HIV. DESIGN: This HIV stigma study was nested in the HPTN 071 (PopART) trial, a three-arm cluster randomised trial conducted between 2013 and 2018 in 21 urban/peri-urban communities (12 in Zambia and nine in South Africa). METHODS: Using an adjusted two-stage cluster-level analysis, controlling for baseline imbalances, we compared multiple domains of stigma between the trial arms at 36 months. Different domains of stigma were measured among three cohorts recruited across all study communities: 4178 randomly sampled adults aged 18-44 who were living with HIV, and 3487 randomly sampled adults and 1224 health workers who did not self-report living with HIV. RESULTS: Prevalence of any stigma reported by people living with HIV at 36 months was 20.2% in arm A, 26.1% in arm B, and 19.1% in arm C (adjusted prevalence ratio, A vs. C 1.01 95% CI 0.49-2.08, B vs. C 1.34 95% CI 0.65-2.75). There were no significant differences between arms in any other measures of stigma across all three cohorts. All measures of stigma reduced over time (0.2--4.1% reduction between rounds) with most reductions statistically significant. CONCLUSION: We found little evidence that UTT either increased or decreased HIV stigma measured among people living with HIV, or among community members or health workers not living with HIV. Stigma reduced over time, but slowly. CLINICALTRIALS. GOV NUMBER: NCT01900977.

Development of parallel measures to assess HIV stigma and discrimination among people living with HIV, community members and health workers in the HPTN 071 (PopART) trial in Zambia and South Africa.

INTRODUCTION: Integrating standardized measures of HIV stigma and discrimination into research studies of emerging HIV prevention approaches could enhance uptake and retention of these approaches, and care and treatment for people living with HIV (PLHIV), by informing stigma mitigation strategies. We sought to develop a succinct set of measures to capture key domains of stigma for use in research on HIV prevention technologies. METHODS: From 2013 to 2015, we collected baseline data on HIV stigma from three populations (PLHIV (N = 4053), community members (N = 5782) and health workers (N = 1560)) in 21 study communities in South Africa and Zambia participating in the HPTN 071 (PopART) cluster-randomized trial. Forty questions were adapted from a harmonized set of measures developed in a consultative, global process. Informed by theory and factor analysis, we developed seven scales, with values ranging from 0 to 3, based on a 4-point agreement Likert, and calculated means to assess different aspects of stigma. Higher means reflected more stigma. We developed two measures capturing percentages of PLHIV who reported experiencing any stigma in communities or healthcare settings in the past 12 months. We validated our measures by examining reliability using Cronbach's alpha and comparing the distribution of responses across characteristics previously associated with HIV stigma. RESULTS: Thirty-five questions ultimately contributed to seven scales and two experience measures. All scales demonstrated acceptable to very good internal consistency. Among PLHIV, a scale captured internalized stigma, and experience measures demonstrated that 22.0% of PLHIV experienced stigma in the community and 7.1% in healthcare settings. Three scales for community members assessed fear and judgement, perceived stigma in the community and perceived stigma in healthcare settings. Similarly, health worker scales assessed fear and judgement, perceived stigma in the community and perceived co-worker stigma in healthcare settings. A higher proportion of community members and health workers reported perceived stigma than the proportion of PLHIV who reported experiences of stigma. CONCLUSIONS: We developed novel, valid measures that allowed for triangulation of HIV stigma across three populations in a large-scale study. Such comparisons will illuminate how stigma influences and is influenced by programmatic changes to HIV service delivery over time.

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.

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.

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.

A Meta-Narrative Literature Synthesis and Framework to Guide Future Evaluation of Legal Empowerment Interventions.

Legal empowerment is increasingly recognized as a key approach for addressing socio-structural determinants of health and promoting the well-being and human rights of vulnerable populations. Legal empowerment seeks to increase people's capacity to understand and use the law. However, limited consensus remains on the effectiveness of legal empowerment interventions in optimizing health outcomes. Leveraging a meta-narrative approach, we synthesized literature describing how legal empowerment interventions have been operationalized and empirically studied with respect to health determinants. The studies included here document diverse legal empowerment approaches and highlight how interventions changed the context surrounding the health of vulnerable populations. The absence of robust conceptualization, operationalization, and measurement of the risk contexts in which legal empowerment approaches operate limits the clarity with which interventions' impact on health can be ascertained. Despite this, legal empowerment is a promising approach to address the health of marginalized populations. To foster support between the fields of legal empowerment and health, we explore the limitations in study design and measurement of the existing evidence base; such scrutiny could strengthen the rigor of future research. This paper provides a guide to the socio-structural levels across which legal empowerment interventions impact health outcomes in order to inform future interventions.

"My mother told me that I should not": a qualitative study exploring the restrictions placed on adolescent girls living with HIV in Zambia.

INTRODUCTION: Adolescent girls in sub-Saharan Africa are disproportionately affected by HIV due to a range of social and structural factors. As they transition to adulthood, they are recipients of increasing blame for HIV infection and 'improper' sex, as well as increasing scrutiny, restrictions and surveillance. This study used a qualitative and participatory approach to explore the messaging and restrictions imposed on adolescent girls living with HIV in Zambia. METHODS: Thirty-four in-depth interviews and four participatory workshops were carried out with 24 adolescent girls aged 15 to 19 years old living with HIV in Lusaka, Zambia. Key themes explored included experiences living with HIV, finding out about HIV status, disclosure, experiences with antiretroviral treatment, and support needs. Data were organized, coded and analysed using a grounded theory approach to thematic analysis. This analysis uses data on participants' experiences of living with HIV and their interactions with their parents, guardians and healthcare providers. RESULTS: Family and healthcare providers, partly in a quest to protect both the health of adolescent girls living with HIV and also to protect them from blaming discourse, imposed restrictions on their behaviour around three main topics: don't disclose your HIV status, don't have sex, and don't miss your medicines. These restrictions were often delivered using tactics of fear, and usually disconnected from other options. Participants responded to these messages in several ways, including internalizing the messages, changing their behaviour either to comply with or resist the restrictions, by remaining silent and anxious when restrictions were broken, and developing concerns around their own health and sexual and reproductive aspirations. Participants also sometimes experiencing stigma when restrictions could not be maintained. CONCLUSIONS: Restrictive messages were delivered to adolescent girls living with HIV through the broader social discourses of stigma, religion, and global and local narratives about HIV. Programmes aiming to support adolescent girls living with HIV need to work together with parents and healthcare providers to reflect on the impact of sanctioning messages, and to encourage more enabling and empowering messaging for adolescent girls living with HIV.

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.

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.

A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come?

INTRODUCTION: HIV-related stigma and discrimination continue to hamper efforts to prevent new infections and engage people in HIV treatment, care and support programmes. The identification of effective interventions to reduce stigma and discrimination that can be integrated into national responses is crucial to the success of the global AIDS response. METHODS: We conducted a systematic review of studies and reports that assessed the effectiveness of interventions to reduce HIV stigma and discrimination between 1 January 2002 and 1 March 2013. Databases searched for peer-reviewed articles included PubMed, Scopus, EBSCO Host -CINAHL Plus, Psycinfo, Ovid, Sociofile and Popline. Reports were obtained from the www.HIVAIDSClearinghouse.eu, USAID Development Experience Clearinghouse, UNESCO HIV and AIDS Education Clearinghouse, Google, WHO and UNAIDS. Ancestry searches for articles included in the systematic review were also conducted. Studies of any design that sought to reduce stigma as a primary or secondary objective and included pre- and post-intervention measures of stigma were included. RESULTS: Of 2368 peer-reviewed articles and reports identified, 48 were included in our review representing 14 different target populations in 28 countries. The majority of interventions utilized two or more strategies to reduce stigma and discrimination, and ten included structural or biomedical components. However, most interventions targeted a single socio-ecological level and a single domain of stigma. Outcome measures lacked uniformity and validity, making both interpretation and comparison of study results difficult. While the majority of studies were effective at reducing the aspects of stigma they measured, none assessed the influence of stigma or discrimination reduction on HIV-related health outcomes. CONCLUSIONS: Our review revealed considerable progress in the stigma-reduction field. However, critical challenges and gaps remain which are impeding the identification of effective stigma-reduction strategies that can be implemented by national governments on a larger scale. The development, validation, and consistent use of globally relevant scales of stigma and discrimination are a critical next step for advancing the field of research in this area. Studies comparing the effectiveness of different stigma-reduction strategies and studies assessing the influence of stigma reduction on key behavioural and biomedical outcomes are also needed to maximize biomedical prevention efforts.