Development and Preliminary Validation of Scales to Measure Enacted, Perceived, and Experienced Hearing Loss Stigma in Health Care Settings.

OBJECTIVES: Qualitative evidence suggests that stigma experienced by people who are d/Deaf and hard of hearing (d/DHH) can reduce willingness to engage with health services. Quantitative evidence remains lacking, however, about how health care providers (HCPs) perceive societal stigma toward people who are d/DHH, how HCPs might enact d/DHH stigma within provider-patient encounters, and what patients who are d/DHH share with providers about those patients' perceptions and experiences of stigma. Such quantitative evidence would allow HCPs to understand if and how stigma influences hearing health decisions made by people who are d/DHH. It could also shape practices to reduce d/DHH stigma within clinical encounters and guide providers in considering stigma as a driving force in their patients' hearing health care decisions. Building that evidence base requires validated quantitative measures. In response, the present study initiated an iterative process toward developing and preliminarily validating HCP self-report measures for different forms of d/DHH stigma. These measures draw upon HCPs' own perspectives, as well as their reports of secondhand information about stigma shared during clinical conversations. We developed and preliminary validated four measures: (1) provider-perceived stigma (HCPs' perceptions of the existence of negative attitudes and stereotypes toward d/DHH individuals in society), (2) provider-enacted stigma (self-reported subtle or indirect acts of stigma HCPs might commit during clinical encounters), (3) secondhand patient-experienced stigma (external acts of stigma reported to HCPs by patients who are d/DHH during clinical encounters), and (4) secondhand patient-perceived stigma (perceptions of negative attitudes and stereotypes reported to HCPs by patients who are d/DHH during clinical encounters). DESIGN: Scale items were extracted from a comprehensive literature review of stigma measures. Question stems and individual items were adapted for HCPs, cognitively tested on 5 HCPs, and pretested with 30 HCPs. The 4 scales were then validated on a sample of primary care providers and hearing care specialists (N = 204) recruited through an online survey. All data were collected in the United States. RESULTS: We conducted an exploratory factor analysis of the four proposed d/DHH stigma HCP stigma scales. Scale items loaded satisfactorily with ordinal alphas ranging between 0.854 and 0.944. CONCLUSIONS: The four measures developed and preliminarily validated in this study can provide opportunities for HCPs to develop a more nuanced understanding of stigma experienced and perceived by their patients who are d/DHH and how that stigma manifests across social contexts, including health care settings. Further, the ability to assess forms of d/DHH stigma in clinical encounters, as well as their association with patient disengagement and resistance to advanced hearing care, could lead to innovative stigma-reduction interventions. Such interventions could then be evaluated using the measures from this article and then applied to clinical practice. We envision these measures being further refined, adapted, and tested for a variety of health care contexts, including primary care settings where hearing difficulties may first be identified and in hearing health care settings where audiologic rehabilitation is initiated.

Development and Preliminary Validation of Stigma Measures for Care Partners of Persons Who Are d/Deaf or Hard of Hearing.

OBJECTIVES: A great deal of literature documents the significant demands, both physical and psychosocial, that care partners experience when providing care to persons with a range of health conditions. There is, however, far less research available on care partners of adult persons who are d/Deaf or hard of hearing (d/DHH). In response to this gap, the authors developed measures of d/DHH stigma among care partners as part of the work of the Lancet Commission on Hearing Loss' Measures, Models, and Stigma Reduction Subgroup. The measures examined in this article are part of a larger set of parallel measures to enable comparison of stigma measurement across groups. DESIGN: The present study describes the preliminary validation of five stigma scales specifically tailored for use to assess the prevalence and effect of stigma on the care partners of adult people who are d/DHH in the United States. Care partners in this context are defined broadly and can include spouses, partners, adult children, siblings, and friends of persons who are d/DHH. The scales describe the care partner's own assessment of how the person who is d/DHH experiences and perceives stigma as well as the care partner's own internalized, experienced, and perceived stigma as a result of their association with a person who is d/DHH. This latter set of three scales describes secondary stigma, or the stigma a person experiences related to their association with a member of a stigmatized group. Measures were developed through a process that included a literature review, Delphi groups with people who became d/DHH after they developed spoken language, cognitive interviews, and a pretest. An online, self-administered preliminary validation survey was conducted with 151 care partners. RESULTS: Results support the internal reliability of each of the five stigma scales (ordinal α's all greater than 0.9) and that each scale is assessing a single factor. CONCLUSIONS: Additional testing is needed to confirm the validity of these measures. After further validation, they can be used to assess the prevalence and effect of stigma on care partners of persons who are d/DHH and to evaluate the success of interventions developed to address stigma and its effects both on the care partner and the person who is d/DHH and receiving the care.

Preliminary Validation of Experienced Ageism Measures With Four Populations in the United States.

OBJECTIVES: Ageism appears widely across the globe and poses an important threat to older people's well-being and health. With respect to hearing health, experiences, perceptions, and fear of ageism can delay the diagnosis of hearing loss, reduce pursuit of hearing care, and fuel reluctance to wear a hearing device. Ageism intertwines with hearing loss stigma, which potentially deepens the negative effects of both; however, little evidence exists to quantify the effects of the intersection of ageism and hearing loss stigma. This lack of data on both hearing loss stigma and ageism, and their intersection, may stem from the lack of validated measures for both. Therefore, as part of a parent study to develop and preliminarily validate d/Deaf and hard of hearing stigma measures, we also adapted and preliminarily validated measures of both experienced and observed ageism. DESIGN: We adapted four ageism measures through a literature review, expert discussions, and cognitive interviews and validated them in the United States through self-administered online surveys with convenience samples of (1) people aged 60 and older who became d/Deaf or hard of hearing (d/DHH) after developing language or in adulthood ("acquired" d/DHH), (2) care partners of people aged 60 or older who are d/DHH (acquired), (3) health care providers, and (4) the general population. For each of the scales, we applied exploratory factor analysis and estimated scale reliability with ordinal α. RESULTS: For the population of persons over age 60 who are d/DHH (acquired) (N = 146), nine social stigma items and four employment discrimination items loaded well onto two separate factors, one which measures social stigma and one which measures employment discrimination. All loadings were >0.7. The two factors were moderately correlated at 0.428. For care partners of people aged 60 or older who are d/DHH (N = 72), nine items loaded well onto a single factor, with loadings between 0.650 and 0.936 and an ordinal α of 0.95. Among the general population (N = 312), 10 items loaded cleanly onto a single factor, with loadings between 0.702 and 0.919 and an ordinal α of 0.96. For the health care providers (N = 203), 11 items loaded well onto a single factor, with loadings between 0.541 and 0.874. For these three populations, each of the single factors measure social stigma. CONCLUSIONS: Ageism threatens the health and wellbeing of older people in both high- and low-income countries. Validated measures of ageism are necessary to understand the relationship between ageism, d/DHH stigma and the well-being of older adults and to design effective ageism-reduction and mitigation interventions. This preliminary validated set of experienced ageism measures offers a starting point for more studies that not only further validate these measures but are larger in scale, occur in more diverse settings, and provide insights into the experience of ageism and its effects on the health and well-being of older adults.

Preliminary Validation of Hearing Device-Related Stigma Measures in Four United States Populations.

OBJECTIVES: Although hearing devices such as cochlear implants and hearing aids often improve communication, many people who are d/Deaf or hard of hearing (d/DHH) choose not to use them. Hearing device-related stigma, or negative societal beliefs about people who use hearing devices, often drives this decision. Although much research has documented the negative effects of hearing device-related stigma, no widely accepted, validated measure to quantify such stigma across populations currently exists. In this article, we describe the preliminary validation of four distinct but related scales measuring hearing device-related stigma in different populations, including people who use hearing devices and those close to them. DESIGN: We preliminarily validated four measures for quantifying hearing device-related stigma in different populations that were previously developed and refined through a literature review, Delphi interviews, cognitive interviews, and a pretest. We preliminarily validated these measures through self-administered online surveys in a convenience sample in the United States. Among participants who use a hearing device and who either (a) self-identified as being d/DHH before they developed language (lifelong; n = 78) or (b) those who self-identified as having acquired a d/DHH identity after they developed language (acquired n = 71), we validated an anticipated hearing device-related stigma scale (d/DHHS-LE-HDA). We validated three scales that measure perceived hearing device-related stigma observed by parents of children who are d/DHH and who use a hearing device (n = 79) (d/DHHS-P-HDPO), care partners of adults who are d/DHH and use a hearing device (n = 108) (d/DHHS-CP-HDPO), and health care providers (n = 203) (d/DHHS-HCP-HDSH). Exploratory factor analysis assessed the reliability of each measure. RESULTS: Each of the four scales loaded onto one factor. Factor loadings for the eight-item scale measuring anticipated hearing device-related stigma among the two populations with lived experience ranged from 0.635 to 0.910, with an ordinal α of 0.93 in the lifelong d/DHH participants and 0.94 among the acquired d/DHH participants. The six-item scale of perceived stigma observed by parents had item loadings from 0.630 to 0.920 (α = 0.91). The nine-item scale of hearing device-related stigma observed by care partners had item loadings from 0.554 to 0.922 (α = 0.95). The eight-item scale of hearing device-related stigma reported by health care providers had item loadings from 0.647 to 0.941 (α = 0.89). CONCLUSIONS: Preliminary validation results show that the four stigma measures perform well in their respective populations. The anticipated stigma scale performed similarly well for both lifelong d/DHH and acquired d/DHH, which suggests that it could perform well in different contexts. Future research should further validate the scales described here as well as measure hearing device-related stigma in different populations-including people who live in different geographic regions and people using different kinds of hearing devices-and evaluate the success of interventions developed to reduce hearing device-related stigma.

Research Agenda and Applications for Preliminarily Validated Measures of d/Deaf and Hard of Hearing Stigma.

In this special supplement of Ear and Hearing, we have presented preliminarily validated measures for stigma related to being d/Deaf or hard of hearing (d/DHH) in the United States and Ghana. In this concluding article, we suggest avenues for the future refinement and use of these measures. First, the measures should be further validated. Second, they should be used to assess the current state of d/DHH stigma and the importance of different kinds of stigma in different populations, which should in turn drive the development of interventions to reduce d/DHH stigma. Third, these measures can assist in evaluating the effectiveness and cost-effectiveness of those interventions. The evidence from this work can then inform investment cases and cost-of-condition studies, which will support advocacy efforts and policy development for reducing stigma and improving the lives of people who are d/DHH.

Preliminary Validation of Stigma Measures Among Parents of Children Who Are d/Deaf or Hard of Hearing in the United States and Ghana.

OBJECTIVES: Parents are integral to the development and overall well-being of their child. Previous research has studied the emotional effects parenting experiences have on parents. However, parents caring for children with disabilities have unique parenting experiences, filled with both victories and challenges. Parenting a child with disabilities can bring additional responsibilities as parents respond to their child's special needs. Specifically, parents of children who are d/Deaf or hard of hearing (d/DHH) are required to make ongoing life-changing decisions about their child's life, including mode of communication, medical care, and education. Across the world, many adults who are d/DHH experience stigma. However, less is known about the stigma faced by children who are d/DHH and their parents. Measuring the nature and magnitude of stigma-affecting parents of children who are d/DHH could offer insights into how to additionally support these parents. Nonetheless, there is a gap in validated scales to measure stigma among parents of children who are d/DHH. In response, we developed and preliminarily validated five measures of stigma among parents of children who are d/DHH. DESIGN: Measures were developed through a mixed-method process: (1) a scoping literature review, (2) a modified Delphi process consisting of two group discussions (n = 3, n = 4) and two individual discussions with parents of children who are d/DHH from high-income countries (HICs) and low- and middle-income countries (LMICs), (3) cognitive interviews with parents of children who are d/DHH in the United States (U.S.) (n = 5) and Ghana (n = 5), and (4) a pretest of the survey in the U.S. (n = 28) and Ghana (n = 30). Modifications to the measures were made after each stage. This article focuses on evaluating the psychometric performance of the developed measures. Parents were recruited in the U.S. (n = 100) and Ghana (n = 173). Convenience sampling was used in both countries. In Ghana, survey administration was in-person with trained interviewers collecting data on tablets. In the U.S. data were collected online through self-administered surveys. RESULTS: The final five scales measured: (1) parental observation of stigma their child experiences (seven items), (2) parental perceptions of stigma toward their child (eight items), (3) parental secondary experienced stigma (eight items), (4) perceived parental secondary stigma (five items), and (5) parental internalized stigma (seven items). All scales performed strongly and similarly across both country samples. The scales had ordinal αs ranging from 0.864 to 0.960, indicating strong reliability. CONCLUSIONS: This study provides a set of preliminarily validated stigma measures to capture the experience of parents of children who are d/DHH. Measuring stigma among parents is critical to understanding parental mental health, as parental well-being affects the health and development of their child. Furthermore, measuring observed stigma by parents can allow the researcher to gain an understanding of the stigma experienced by children who are d/DHH that they may not be able to communicate. Further studies testing these measures across other countries and with more diverse samples are needed.

Preliminary Validation of Measures of Experienced, Perceived, and Internalized Stigma Among Adults Who Are d/Deaf or Hard of Hearing in the United States and Ghana.

OBJECTIVES: In this article, we examine the psychometric performance of 3 scales measuring experienced, perceived, and internalized d/Deaf or hard of hearing (d/DHH) stigma among adult (18 and older) populations of individuals who are d/DHH, including those who have been d/DHH since before they developed language (lifelong) and those who became d/DHH after they developed language (acquired) in the United States and Ghana. DESIGN: The preliminary validation study took place in the Greater Accra and Eastern regions of Ghana and across the United States. In the United States, all data were collected online via self-administered surveys in English. In Ghana, trained interviewers who are d/DHH and fluent in Ghanaian Sign Language conducted interviews with participants who are lifelong d/DHH using a video survey. Ghanaian participants with acquired d/DHH status were surveyed by trained hearing interviewers. We calculated polychoric correlation matrices between the measures to remove redundant and unrelated items and used exploratory factor analysis to create the final scales. We also tested the association between the factor scores and a simple summing method for calculating the scale. RESULTS: The study sample included people who have been d/DHH since before they developed language (Ghana: n = 171, United States n = 100) and people who became d/DHH after they developed language (Ghana: n = 174, United States: n = 219). The final experienced, perceived, and internalized scales included six, seven, and five items, respectively. All three scales performed well as unidimensional measures across all four samples. Across the four samples, the experienced, perceived, and internalized stigma scales yielded ordinal αs ranging from 0.725 to 0.947, 0.856 to 0.935, and 0.856 to 0.935, respectively. It would be acceptable to operationalize all stigma scales as sum-of-item scores. CONCLUSIONS: The scales performed well and appear to provide a valid means of measuring different types of stigma among diverse groups of people who are d/DHH. Future work should refine and validate these scales in additional contexts.

Development of Measures for d/Deaf and Hard of Hearing Stigma: Introduction to the Special Supplement on Stigma Measurement Tools.

People who are d/Deaf or hard of hearing (d/DHH) often experience stigma and discrimination in their daily lives. Qualitative research describing their lived experiences has provided useful, in-depth insights into the pervasiveness of stigma. Quantitative measures could facilitate further investigation of the scope of this phenomenon. Thus, under the auspices of the Lancet Commission on Hearing Loss, we developed and preliminarily validated survey measures of different types of stigma related to d/Deafness and hearing loss in the United States (a high-income country) and Ghana (a lower-middle income country). In this introductory article, we first present working definitions of the different types of stigma; an overview of what is known about stigma in the context of hearing loss; and the motivation underlying the development of measures that capture different types of stigma from the perspectives of different key groups. We then describe the mixed-methods exploratory sequential approach used to develop the stigma measures for several key groups: people who are d/DHH, parents of children who are d/DHH, care partners of people who are d/DHH, healthcare providers, and the general population. The subsequent manuscripts in this special supplement of Ear and Hearing describe the psychometric validation of the various stigma scales developed using these methods.

Measuring intersectional HIV, sexual diversity, and gender non-conformity stigma among healthcare workers in Ghana: scale validation and correlates of stigma.

BACKGROUND: Men who have sex with men (MSM) are at heightened risk for HIV acquisition, yet they may delay or avoid HIV testing due to intersectional stigma experienced at the healthcare facility (HCF). Few validated scales exist to measure intersectional stigma, particularly amongst HCF staff. We developed the Healthcare Facility Staff Intersectional Stigma Scale (HCF-ISS) and assessed factors associated with stigma in Ghana. METHODS: We analyzed baseline data from HCF staff involved in a study testing a multi-level intervention to reduce intersectional stigma experienced by MSM. Data are from eight HCFs in Ghana (HCF Staff n = 200). The HCF-ISS assesses attitudes and beliefs towards same-sex relationships, people living with HIV (PLWH) and gender non-conformity. Exploratory factor analysis assessed HCF-ISS construct validity and Cronbach's alphas assessed the reliability of the scale. Multivariable regression analyses assessed factors associated with intersectional stigma. RESULTS: Factor analysis suggested an 18-item 3-factor scale including: Comfort with Intersectional Identities in the Workplace (6 items, Cronbach's alpha = 0.71); Beliefs about Gender and Sexuality Norms (7 items, Cronbach's alpha = 0.72); and Beliefs about PLWH (5 items, Cronbach's alpha = 0.68). Having recent clients who engage in same-gender sex was associated with greater comfort with intersectional identities but more stigmatizing beliefs about PLWH. Greater religiosity was associated with stigmatizing beliefs. Infection control training was associated with less stigma towards PLWH and greater comfort with intersectional identities. CONCLUSIONS: Achieving the goal of ending AIDS by 2030 requires eliminating barriers that undermine access to HIV prevention and treatment for MSM, including HCF intersectional stigma. The HCF-ISS provides a measurement tool to support intersectional stigma-reduction interventions.

Adapting a health facility HIV stigma-reduction participatory training intervention to address drug use stigma in HIV care and treatment clinics in Dar es Salaam, Tanzania.

BACKGROUND: HIV prevalence among people who use drugs (PWUD) in Tanzania is 4-7 times higher than in the general population, underscoring an urgent need to increase HIV testing and treatment among PWUD. Drug use stigma within HIV clinics is a barrier to HIV treatment for PWUD, yet few interventions to address HIV-clinic drug use stigma exist. Guided by the ADAPT-ITT model, we adapted the participatory training curriculum of the evidence-based Health Policy Plus Total Facility Approach to HIV stigma reduction, to address drug use stigma in HIV care and treatment clinics (CTCs). METHODS: The first step in the training curriculum adaptation process was formative research. We conducted 32 in-depth interviews in Dar es Salaam, Tanzania: 18 (11 men and 7 women) with PWUD living with HIV, and 14 with a mix of clinical [7] and non-clinical [7] CTC staff (5 men and 9 women). Data were analyzed through rapid qualitative analysis to inform initial curriculum adaptation. This initial draft curriculum was then further adapted and refined through multiple iterative steps of review, feedback and revision including a 2-day stakeholder workshop and external expert review. RESULTS: Four CTC drug use stigma drivers emerged as key to address in the curriculum adaptation: (1) Lack of awareness of the manifestations and consequences of drug use stigma in CTCs (e.g., name calling, ignoring PWUD and denial of care); (2) Negative stereotypes (e.g., all PWUD are thieves, dangerous); (3) Fear of providing services to PWUD, and; (4) Lack of knowledge about drug use as a medical condition and absence of skills to care for PWUD. Five, 2.5-hour participatory training sessions were developed with topics focused on creating awareness of stigma and its consequences, understanding and addressing stereotypes and fears of interacting with PWUD; understanding drug use, addiction, and co-occurring conditions; deepening understanding of drug use stigma and creating empathy, including a panel session with people who had used drugs; and working to create actionable change. CONCLUSION: Understanding context specific drivers and manifestations of drug use stigma from the perspective of PWUD and health workers allowed for ready adaptation of an existing evidence-based HIV-stigma reduction intervention to address drug use stigma in HIV care and treatment clinics. Future steps include a pilot test of the adapted intervention.

The Importance of the Individual in PrEP Uptake: Multilevel Correlates of PrEP Uptake Among Adolescent Girls and Young Women in Tshwane, South Africa.

Adolescent girls and young women (AGYW) account for 25% of new HIV infections in South Africa. Pre-exposure prophylaxis (PrEP) is approved by the South African Government, but the factors that promote PrEP uptake among AGYW are not well understood. This study examines multilevel factors associated with PrEP uptake among AGYW in six clinic catchment areas in Tshwane (Pretoria), South Africa. After consent/assent, PrEP-eligible AGYW (n = 448) completed a questionnaire assessing factors at the individual, network/interpersonal, and community levels and were prescribed PrEP in study clinics, if interested. A multivariable model, adjusting for clustering, assessed factors associated with PrEP uptake over a 9-month period. At the individual level, multiple partners in the past 3 months (OR = 0.47), perceived risk of HIV (OR = 0.71), and PrEP-related shame (OR = 0.63) were correlated with lower odds of PrEP uptake (ps ≤ 0.05). The findings highlight modifiable factors that should be addressed to support PrEP uptake efforts.

The Influence of Transmission-Based and Moral-Based HIV Stigma Beliefs on Intentions to Discriminate Among Ward Staff in South Indian Health Care Settings.

HIV stigma is comprised of several beliefs, including transmission fears and moral judgments against affected communities. We examined the relationships among HIV-related stigma beliefs, endorsement of coercive measures for people living with HIV (PLWH), and intentions to discriminate. We sought to understand to what degree the different stigma beliefs shape support for restrictive policies and discriminatory intentions. Data were drawn from the baseline assessment of DriSti, a cluster randomized controlled trial of an HIV stigma reduction intervention in Indian healthcare settings (NCT02101697). Participants completed measures assessing transmission fears and moral judgments of HIV, endorsement of coercive measures against PLWH (public disclosure of HIV status, refusal of healthcare services, marriage and family restrictions, required testing, and sharing of HIV information in a clinic), and intentions to discriminate against PLWH in professional and personal settings. We utilized multivariate regression modeling with backward elimination to identify the coercive measures and behavioral intentions most strongly associated with moral judgments. 1540 ward staff members completed the assessment. Participants had relatively high perceptions of transmission fears (M = 1.92, SD = 0.79) and moral judgments (M = 1.69, SD = 0.83); endorsed more intentions to discriminate in professional (M = 6.54, SD = 2.28) than personal settings (M = 2.07, SD = 1.49), and endorsed approximately half of all coercive measures (M = 9.47, SD = 2.68). After controlling for transmission fears, perceptions of stronger moral judgments against PLWH were significantly associated with higher endorsement of coercive measures related to refusing services (ß = 0.10, t = 4.14, p < 0.001) and sharing patients' HIV status in clinics (ß = 0.07, t = 3.04, p = 0.002), as well as with stronger behavioral intentions to discriminate in professional settings (ß = 0.05, t = 2.20, p = 0.022). HIV stigma interventions for hospital-based ward staff in India need to focus on both transmission fears and moral judgments that underlie prejudicial beliefs. While the moral judgments are not technically related to risk in a hospital setting, our findings suggest that personnel will continue to discriminate in their professional work so long as these beliefs bear on their decisions and actions.

Multi-level manifestations of sexual stigma among men with same-gender sexual experience in Ghana.

Sexual stigma and discrimination toward men who have same-gender sexual experiences are present across the globe. In Ghana, same-gender sexual desires and relationships are stigmatized, and the stigma is sanctioned through both social and legal processes. Such stigma negatively influences health and other material and social aspects of daily life for men who have sex with men (MSM). However, there is evidence that stigma at the interpersonal level can intersect with stigma that may be operating simultaneously at other levels. Few studies provide a comprehensive qualitative assessment of the multi-level sexual stigma derived from the direct narratives of men with same-gender sexual experience. To help fill this gap on sexual stigma, we qualitatively investigated [1] what was the range of sexual stigma manifestations, and [2] how sexual stigma manifestations were distributed across socioecological levels in a sample of Ghanaian MSM. From March to September 2020, we conducted eight focus group discussions (FGDs) with MSM about their experiences with stigma from Accra and Kumasi, Ghana. Data from the FGDs were subjected to qualitative content analysis. We identified a range of eight manifestations of sexual stigma: (1) gossiping and outing; (2) verbal abuse and intrusive questioning; (3) non-verbal judgmental gestures; (4) societal, cultural, and religious blaming and shaming; (5) physical abuse; (6) poor-quality services; (7) living in constant fear and stigma avoidance; and (8) internal ambivalence and guilt about sexual behavior. Sexual stigma manifestations were unevenly distributed across socioecological levels. Our findings are consistent with those of existing literature documenting that, across Africa, and particularly in Ghana, national laws and religious institutions continue to drive stigma against MSM. Fundamental anti-homosexual sentiments along with beliefs associating homosexuality with foreign cultures and immorality drive the stigmatization of MSM. Stigma experienced at all socioecological levels has been shown to impact both the mental and sexual health of MSM. Deeper analysis is needed to understand more of the lived stigma experiences of MSM to develop appropriate stigma-reduction interventions. Additionally, more community-level stigma research and interventions are needed that focus on the role of family and peers in stigma toward MSM in Ghana.

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.

Patient and Provider Perspectives on HIV Stigma in Healthcare Settings in Underserved Areas of the US South: A Mixed Methods Study.

Stigma experienced in healthcare settings is a barrier to ending the HIV epidemic. Using a convergent parallel mixed methods approach, we collected qualitative data from 14 focus groups with People with HIV (PWH) and Healthcare workers (HCW) and quantitative survey data (N = 762 PWH and N = 192 HCW) from seven HIV healthcare clinics outside of major urban areas in the southeastern US. Four key themes emerged: (1) HIV-related stigma and discrimination in healthcare settings; (2) experiences of intersectional stigma; (3) disclosure concerns in healthcare settings; and (4) impact of stigma on HIV-related health behavior. Implications for future stigma interventions in healthcare settings include the importance of engaging PWH in the development of interventions, the need for interventions in settings that do not specialize in HIV care, and the importance of engaging all staff when addressing HIV-related stigma.

RESUMEN: El estigma experimentado en los entornos de atención médica es una barrera para poner fin a la epidemia del VIH. Utilizando un enfoque convergente de métodos mixtosparalelos, recopilamos datos cualitativos de 14 grupos focales con personas con VIH y trabajadores de la salud y datos de encuestas cuantitativas (N = 762 personas con VIH y N = 192 trabajadores de la salud) de siete clínicas de atención médica de VIH fuera de las principales áreas urbanas en el sureste de los Estados Unidos. Surgieron cuatro temas clave: (1) el estigma y la discriminación relacionados con el VIH en los entornos de atención médica; (2) experiencias de estigma interseccional; (3) preocupaciones de divulgación en entornos de atención médica; y (4) el impacto del estigma en el comportamiento de salud relacionado con el VIH. Las implicaciones para futuras intervenciones de estigma en entornos de atención médica incluyen la importancia de involucrar a las personas con VIH en el desarrollo de intervenciones, la necesidad de intervenciones en entornos que no se especializan en la atención del VIH y la importancia de involucrar a todo el personal al abordar el estigma relacionado con el VIH.

Stigma in the health clinic and implications for PrEP access and use by adolescent girls and young women: conflicting perspectives in South Africa.

BACKGROUND: Globally, an urgent need exists to expand access to HIV prevention among adolescent girls and young women (AGYW), but the need is particularly acute in sub-Saharan Africa. Oral pre-exposure prophylaxis (PrEP) offers an effective HIV prevention method. In many countries, however, accessing PrEP necessitates that AGYW visit their local health clinic, where they may face access challenges. Some countries have implemented youth-friendly services to reduce certain challenges in local health clinics, but barriers to access persist, including clinic stigma. However, evidence of clinic stigma toward AGYW, particularly with respect to PrEP service delivery, is still limited. This mixed methods study explores stigma toward AGYW seeking clinic services, in particular PrEP, from the perspective of both clinic staff (clinical and nonclinical) and AGYW who seek services at clinic sites in Tshwane province, South Africa. METHODS: Six focus group discussions were conducted with AGYW (43 total participants) and four with clinic staff (42 total participants) and triangulated with survey data with AGYW (n = 449) and clinic staff (n = 130). Thematic analysis was applied to the qualitative data and descriptive statistics were conducted with the survey data. RESULTS: Four common themes emerged across the qualitative and quantitative data and with both AGYW and clinic staff, although with varying degrees of resonance between these two groups. These themes included (1) clinic manifestations of stigma toward AGYW, (2) concerns about providing PrEP services for AGYW, (3) healthcare providers' identity as mothers, and (4) privacy and breaches of confidentiality. An additional theme identified mainly in the AGYW data pertained to stigma and access to healthcare. CONCLUSION: Evidence is needed to inform strategies for addressing clinic stigma toward AGYW, with the goal of removing barriers to PrEP services for this group. While awareness has increased and progress has been achieved around the provision of comprehensive, youth-friendly sexual and reproductive health services, these programs need to be adapted for the specific concerns of young people seeking PrEP services. Our findings point to the four key areas noted above where programs seeking to address stigma toward AGYW in clinics can tailor their programming.

Health worker perceptions of stigma towards Zambian adolescent girls and young women: a qualitative study.

BACKGROUND: The high prevalence of HIV among adolescent girls and young women aged 15-24 in Eastern and Southern Africa indicates a substantial need for accessible HIV prevention and treatment services in this population. Amidst this need, Zambia has yet to meet global testing and treatment targets among adolescent girls and young women living with HIV. Increasing access to timely, high-quality HIV services in this population requires addressing the intensified anticipated and experienced stigma that adolescent girls and young women often face when seeking HIV care, particularly stigma in the health facility setting. To better understand the multi-level drivers and manifestations of health facility stigma, we explored health workers' perceptions of clinic- and community-level stigma against adolescent girls and young women seeking sexual and reproductive health, including HIV, services in Lusaka, Zambia. METHODS: We conducted 18 in-depth interviews in August 2020 with clinical and non-clinical health workers across six health facilities in urban and peri-urban Lusaka. Data were coded in Dedoose and thematically analyzed. RESULTS: Health workers reported observing manifestations of stigma driven by attitudes, awareness, and institutional environment. Clinic-level stigma often mirrored community-level stigma. Health workers clearly described the negative impacts of stigma for adolescent girls and young women and seemed to generally express a desire to avoid stigmatization. Despite this lack of intent to stigmatize, results suggest that community influence perpetuates a lingering presence of stigma, although often unrecognized and unintended, in health workers and clinics. CONCLUSIONS: These findings demonstrate the overlap in health workers' clinic and community roles and suggest the need for multi-level stigma-reduction approaches that address the influence of community norms on health facility stigma. Stigma-reduction interventions should aim to move beyond fostering basic knowledge about stigma to encouraging critical thinking about internal beliefs and community influence and how these may manifest, often unconsciously, in service delivery to adolescent girls and young women.

Predictors of HIV Testing among Orphaned Youths in Three East African Countries.

In parts of sub-Saharan Africa, where HIV prevalence is high, HIV is a leading cause of death among youths. Orphaned and separated youths are an especially vulnerable group, yet we know little about what influences their testing behavior. We conducted multiple logistical regression to examine theory-based predictors of past-year HIV testing among 423 orphaned and separated youths in Ethiopia, Kenya and Tanzania. We also conducted moderation, assessing whether predictors varied by sex. Over one-third of our sample reported past-year HIV testing. Those with greater perceived social support and those who reported sexual HIV risk behavior were more likely to report past-year testing. Furthermore, boys who reported ever previously testing for HIV were more likely, a year later, to report past-year HIV testing. In conclusion, our findings have important implications for intervention development, including the potential for enhanced perceived social support to positively influence HIV testing among orphaned and separated youths.

HIV Transmission Worry Predicts Discrimination Intentions Among Nursing Students and Ward Staff in India.

Health facility stigma impedes HIV care and treatment. Worry of contracting HIV while caring for people living with HIV is a key driver of health facility stigma, however evidence for this relationship is largely cross-sectional. This study evaluates this relationship longitudinally amongst nursing students and ward staff in India. Worry of contracting HIV and other known predictors of intent to discriminate were collected at baseline and 6 months in 916 nursing students and 747 ward staff. Using fixed effects regression models, we assessed the effect of key predictors on intent to discriminate over a 6-month period. Worry of contracting HIV predicted intent to discriminate for nursing students and ward staff in care situations with low and high-risk for bodily fluid exposure, confirming prior cross-sectional study results and underscoring the importance of addressing worry of contracting HIV as part of health facility HIV stigma-reduction interventions.

Reducing HIV stigma among healthcare providers in India using a partly tablet-administered intervention: the DriSti trial.

HIV stigma has long been recognized as a significant barrier in the worldwide fight against HIV. Across cultures, stigma has been shown to cause psychological distress and act as a barrier to engagement in care. Health professionals can serve as a crucial source of HIV stigma, with drivers that include fears and transmission misconceptions and pre-existing negative attitudes towards marginalized groups. To increase their impact, stigma reduction interventions need to be scalable and sustainable as well as adaptable to different cultural contexts. The DriSti intervention was designed to meet these needs through an easily adaptable, mostly tablet-administered, interactive intervention delivered to ward staff (n = 1,557) and nursing students (n = 1,625) in 62 Indian institutions, using a cRCT design, with wait-list controls. Six-month outcome analyses, showed significant reductions in misconceptions (p < .001) and worry about acquiring HIV at work (p < .001). Intervention participants also reported significantly greater reductions in endorsement of coercive policies (p < .001) and in the number of situations in which they intended to discriminate against PLWH (p < .001) than control participants. This brief, scaleable intervention could be adapted for similar populations in the region, using different mHealth platforms and thus has important implications for current global stigma reduction initiatives and training curricula.