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.

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 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 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.

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.

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.

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.

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.

Navigating antenatal care: The lived experiences of adolescent girls and young women and caregiver perspectives in Zambia.

INTRODUCTION: Adolescent pregnancy remains a global concern, especially in low- and middle-income countries. Sub-Saharan African nations, including Zambia, bear a disproportionate burden of adolescent pregnancies, contributing to high rates of maternal and child mortality. Despite efforts to improve antenatal care (ANC) services, utilization rates remain suboptimal, especially among adolescent girls and young women (AGYW). OBJECTIVE: To explore the barriers and facilitators to ANC services among AGYW and how these factors might differ by age and HIV status. DESIGN: This qualitative study employs a combination of in-depth interviews (IDIs) and focus group discussions (FGDs) to gather comprehensive insights into the experiences of AGYW regarding ANC services. The study design follows a socio-ecological framework (SEF) to identify multiple levels of influence on ANC utilization. METHODS: We conducted 40 IDIs with AGYW aged 15-24; and 2 FGDs with caregivers of AGYW (n = 16). IDIs explored AGYWs barriers and facilitators to accessing and utilizing healthcare services during pregnancy, as well as social support and HIV treatment and prevention. FGD topics included social support, barriers and facilitators to ANC, and HIV services. We developed a codebook based on the SEF and coded transcripts using Dedoose software. RESULTS: Results showed that early pregnancy knowledge did not always translate to AGYW seeking ANC services right away or within the first trimester. More than half of the AGYW did not initiate ANC until well into the second trimester. Factors including lack of motivation, denial of pregnancy, desires to terminate pregnancies, social norms, policies, clinic environment, and financial constraints contributed to delays in ANC initiation. Social support from family, partners, peers, and the community were crucial motivators for early ANC. Lastly, challenges to ANC continuation included lack of transportation, long clinic waiting times, perceived provider indifference, and stigma at both community and clinic levels. CONCLUSION: In conclusion, gaining insights from qualitative data is essential for comprehensively understanding the barriers and challenges to accessing ANC among this specific age group. By identifying and addressing these barriers while enhancing facilitators, effective programs can be developed and implemented to improve the health and well-being of young mothers and their children.

HIV and intersectional stigma among people living with HIV and healthcare workers and antiretroviral therapy adherence in the Dominican Republic.

BACKGROUND: HIV-related stigma, discrimination, and social marginalization undermines optimal HIV care outcomes. More research examining the impact of HIV-related stigma, discrimination, other interlocking forms of oppression, and antiretroviral therapy (ART) adherence is needed to optimize HIV treatment programming. This study uses data from two clinics in the Dominican Republic to examine client and healthcare worker (HCW) perceptions of HIV and intersectional stigmas among people living with HIV. METHODS: Surveys exploring demographics, HIV-related stigma, various dimensions of discrimination (race/ethnicity, HIV status, sexual orientation), healthcare engagement, and medication adherence were collected from 148 clients and 131 HCWs. Analysis of variance was conducted to examine differences in stigma by clinic and logistic regressions were used to determine predictors of optimal client medication adherence. RESULTS: Perceived discrimination in healthcare facilities due to clients' sexual orientation retained significance in crude and multivariable logistic regression models and was negatively associated with ART adherence (aOR:0.79; 95% CI:0.66, 0.95). DISCUSSION: Findings highlight the importance of implementing strategies to address stigma, discrimination, and social marginalization, particularly within healthcare facilities.

A citizen science approach to develop a digital intervention to reduce HIV stigma and promote HIV self-testing among adolescents and young adults: a mixed methods analysis from Kazakhstan.

INTRODUCTION: Kazakhstan has one of the fastest-growing HIV epidemics in the world, with increasing rates among adolescents and young adults (AYA). Innovative strategies are needed to increase HIV testing uptake and decrease HIV stigma among AYA. Citizen science, defined as the active engagement of the general public in scientific research tasks, promotes and facilitates community engagement throughout the research process. This citizen science study used crowdsourcing to engage AYA in Kazakhstan to develop a digital intervention to reduce HIV stigma and promote HIV self-testing. Our objectives in this paper are to describe the approach used, its feasibility and acceptability, and AYA motivations for and lessons learned collaborating on the study. METHODS: From October 2021 to July 2022, in collaboration with a Community Collaborative Research Board and a Youth Advisory Board, we developed an open call requesting multimedia submissions to reduce HIV testing stigma. Eligible submissions were separated by age group (13-19 or 20-29 years) and judged by a panel composed of AYA (n = 23), healthcare professionals (n = 12), and representatives from the local government and non-governmental organizations (n = 17). Each entry was reviewed by at least four judges and ranked on a 5-point scale. The top 20 open call contestants were asked to submit self-recordings sharing their motivation for and experience participating in the contest and lessons learned. Descriptive statistics were calculated for quantitative data. Qualitative data were coded using open coding. RESULTS: We received 96 submissions from 77 youth across Kazakhstan. Roughly, three-quarters (n = 75/96) of entries met judging eligibility criteria. Of the eligible entries, over half (n = 39/75) scored 3.5 or higher on a 5-point scale (70.0%). The most frequent types of entries were video (n = 36/96, 37.5%), image (n = 28/96, 29.2%) and text (n = 24/96, 25.0%). AYA's primary motivations for collaborating on the study included a desire to improve society and help youth. The main challenges included creating content to address complex information using simple language, finding reliable information online and technological limitations. CONCLUSIONS: Crowdsourcing was feasible and highly acceptable among AYA in Kazakhstan. Citizen science approaches hold great promise for addressing the increasingly complex health and social challenges facing communities today.

Multilevel strategies to end HIV for young couples in Cape Town: Study protocol for a cluster randomized trial.

This protocol presents a multilevel cluster randomized study in 24 communities in Cape Town, South Africa. The study comprises four specific aims. Aim 1, conducted during the formative phase, was to modify the original Couples Health CoOp (CHC) intervention to include antiretroviral therapy/pre-exposure prophylaxis (ART/PrEP), called the Couples Health CoOp Plus (CHC+), with review from our Community Collaborative Board and a Peer Advisory Board. Aim 1 has been completed for staging the trial. Aim 2 is to evaluate the impact of a stigma awareness and education workshop on community members' attitudes and behaviors toward young women and men who use AODs and people in their community seeking HIV services (testing/ART/PrEP) and other health services in their local clinics. Aim 3 is to test the efficacy of the CHC+ to increase both partners' PrEP/ART initiation and adherence (at 3 and 6 months) and to reduce alcohol and other drug use, sexual risk and gender-based violence, and to enhance positive gender norms and communication relative to HIV testing services (n = 480 couples). Aim 4 seeks to examine through mixed methods the interaction of the stigma awareness workshop and the CHC+ on increased PrEP and ART initiation, retention, and adherence among young women and their primary partners. Ongoing collaborations with community peer leaders and local outreach staff from these communities are essential for reaching the project's aims. Additionally, a manualized field protocol with regular training, fidelity checks, and quality assurance are critical components of this multilevel community trial for successful ongoing data collection. Trial registration. Clinicaltrials.gov Registration Number: NCT05310773. Pan African Trials: pactr.samrc.ac.za/ Registration Number: PACTR202205640398485.

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.

"One pastor advised him to stop taking HIV medication": Promoters and barriers to HIV care among gay, bisexual, and men who have sex with men living with HIV in Ghana.

Introduction: Few studies examine Ghanaian gay, bisexual, and other men who have sex with men (GBMSM) experience with HIV diagnoses and linkage to care. This article provides qualitative accounts of promoters and barriers to care among GBMSM living with HIV in Ghana. Methods: We recruited and interviewed 10 GBMSM living with HIV in two Ghanaian cities. We transcribed the interviews, coded the data, and used thematic content analysis. Results: We found that community and healthcare facility (HCF) level HIV and sexual stigma, confidentiality issues, alternative medicine, and substance use remain the key barriers to care. Other barriers include healthcare system issues such as long wait times and economic problems (e.g., health insurance and financial difficulties). Nonetheless, HCF-level factors such as positive experiences with providers, HIV counseling, and detailed medication information facilitate adherence to care among GBMSM. Conclusion: This study highlights the need for interventions that address linkage to care issues, especially substance use, disinformation, and misinformation among GBMSM and other Ghanaian communities.

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.

Scoping review of HIV-related intersectional stigma among sexual and gender minorities in sub-Saharan Africa.

OBJECTIVES: Sexual and gender minority (SGM) populations in sub-Saharan Africa (SSA) are disproportionately impacted by HIV and often face multiple HIV-related stigmas. Addressing these stigmas could reduce SGM HIV vulnerability but little is known about how the stigmas operate and intersect. Intersectional stigma offers a lens for understanding the experiences of stigmatised populations and refers to the synergistic negative health effects of various systems of oppression on individuals with multiple stigmatised identities, behaviours or conditions. This review aims to (1) assess how often and in what ways an intersectional lens is applied in HIV-related stigma research on SGM populations in SSA and (2) understand how intersectional stigma impacts HIV risk in these populations. DESIGN: Scoping review following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews. DATA SOURCES: Public health and regional databases were searched in 2020 and 2022. ELIGIBILITY CRITERIA: Articles in French and English on HIV-related stigma and HIV outcomes among men who have sex with men, women who have sex with women and/or transgender individuals in SSA. DATA EXTRACTION AND SYNTHESIS: Articles were screened and extracted twice and categorised by use of an intersectional approach. Study designs and stigma types were described quantitatively and findings on intersectional stigma were thematically analysed. RESULTS: Of 173 articles on HIV-related stigma among SGM in SSA included in this review, 21 articles (12%) applied an intersectional lens. The most common intersectional stigmas investigated were HIV and same-sex attraction/behaviour stigma and HIV, same-sex attraction/behaviour and gender non-conformity stigma. Intersectional stigma drivers, facilitators and manifestations were identified across individual, interpersonal, institutional and societal socioecological levels. Intersectional stigma impacts HIV vulnerability by reducing HIV prevention and treatment service uptake, worsening mental health and increasing exposure to HIV risk factors. CONCLUSION: Intersectional approaches are gaining traction in stigma research among SGM in SSA. Future research should prioritise quantitative and mixed methods investigations, diverse populations and intervention evaluation.

The development of a conceptual framework on PrEP stigma among adolescent girls and young women in sub-Saharan Africa.

INTRODUCTION: Stigma is a well-known barrier to HIV testing and treatment and is an emerging barrier to pre-exposure prophylaxis (PrEP) use. To guide future research, measurement and interventions, we developed a conceptual framework for PrEP stigma among adolescent girls and young women (AGYW) in sub-Saharan Africa, a priority population for PrEP. METHODS: A literature review, expert consultations and focus group discussions (FGDs) were conducted to adapt the Health Stigma and Discrimination Framework, describing the stigmatization process nested within the socio-ecological framework. We reviewed all articles on PrEP stigma and on HIV, contraceptive or sexuality stigma among AGYW from 2009 to 2019. Expert consultations were conducted with 10 stigma or PrEP researchers and two Kenyan youth advisory boards to revise the framework. Finally, FGDs were conducted with AGYW PrEP users (4 FGDs; n = 20) and key influencers (14 FGDs; n = 72) in Kenya with the help of a Youth Research Team who aided in FGD conduct and results interpretation. Results from each phase were reviewed and the framework was updated to incorporate new and divergent findings. This was validated against an updated literature search from 2020 to 2023. RESULTS: The conceptual framework identifies potential drivers, facilitators and manifestations of PrEP stigma, its outcomes and health impacts, and relevant intersecting stigmas. The main findings include: (1) PrEP stigma is driven by HIV, gender and sexuality stigmas, and low PrEP community awareness. (2) Stigma is facilitated by factors at multiple levels: policy (e.g. targeting of PrEP to high-risk populations), health systems (e.g. youth-friendly service availability), community (e.g. social capital) and individual (e.g. empowerment). (3) Similar to other stigmas, manifestations include labelling, violence and shame. (4) PrEP stigma results in decreased access to and acceptability of PrEP, limited social support and community resistance, which can impact mental health and decrease PrEP uptake and adherence. (5) Stigma may engender resilience by motivating AGYW to think of PrEP as an exercise in personal agency. CONCLUSIONS: Our PrEP stigma conceptual framework highlights potential intervention targets at multiple levels in the stigmatization process. Its adoption would enable researchers to develop standardized measures and compare stigma across timepoints and populations as well as design and evaluate interventions.

"I told myself, be bold and go and test": Motivators and barriers to HIV testing among gay, bisexual, and other cis-gender men who have sex with men in Ghana ‒ West Africa.

Despite a disproportionately high burden of HIV, GBMSM in Ghana and sub-Saharan Africa often delay testing until the point of illness. However, limited studies examine factors that affect their participation in testing. We used qualitative in-depth interviews (IDIs) and focus group discussions (FGDs) to collect insights into experiences, motivators, and barriers to HIV testing among GBMSM. Two community-based organizations used snowball and convenience sampling to recruit 10 GBMSM for IDIs and 8 to 12 for FGDs. We transcribed, coded, identified, and analyzed the relationship and commonalities between the participants' responses. Under experiences with testing, 1) fear of HIV infection created a stressful HIV testing experience, and 2) a friendly and supportive healthcare environment facilitated a positive experience in healthcare facilities. Motivators or facilitators of testing include 1) the perception or belief that HIV testing is an HIV prevention strategy; 2) encouragement from friends and peers; 3) understanding risk associated with certain sexual behaviors; 4) education or information on HIV; 5) access to free testing and incentives; 6) early symptoms and provider recommendation. Barriers to HIV testing include 1) negative community perceptions of HIV; 2) individual-level low-risk perception or indifference about HIV infection; 3) health system issues; 5) Perceived stigma at healthcare facilities. The findings point to the need to address critical issues around stigma, education, peer support, and healthcare resources through interventions and research to improve HIV testing among GBMSM in the country.

"We have our reasons": Exploring the acceptability of pre-exposure prophylaxis among gay, bisexual, and other men who have sex with men in Ghana.

Ghanaian men who have sex with men (MSM) face significant HIV disparities. Pre-exposure prophylaxis (PrEP) is a highly effective tool for HIV prevention. Previous studies on the perspectives of PrEP use among Ghanaian MSM identified high interest in PrEP among this population. However, the knowledge from the previous research, which was the best available evidence at the time, was primarily hypothetical because those data were collected before any real-world implementation of PrEP in Ghana. The purpose of the analysis is to identify and understand the factors currently influencing PrEP acceptance. We conducted a secondary analysis of focus group (n=8) data with Ghanaian MSM. Audio transcripts were subjected to descriptive thematic analysis. There was an almost universal awareness of PrEP, but inaccuracies about PrEP were common. PrEP acceptability was influenced by a mix of individual and intrapersonal factors. To bridge the gap between awareness, knowledge, and acceptability, HIV prevention programs should address access barriers and incorporate community-derived strategies.