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 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 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.

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.

Utilization of adolescent health services during the COVID-19 pandemic: evidence on impact and adaptations from a rapid assessment survey in the Philippines.

BACKGROUND: Due to the COVID-19 pandemic, many challenges in adolescent health have been exacerbated including increased cases of early marriages, domestic violence, higher rates of anxiety and depression, and reduced access to sexual and reproductive health services for adolescents. This study examines the impacts of the pandemic on adolescent health services utilization and potential adaptations in the Philippines. METHODS: The data used in this study was from a rapid telephone assessment survey of 148 adolescent-friendly health facilities (rural health units) in the Philippines. We employed a mixed-methods research approach comprising both quantitative and qualitative analyses in three phases. First, we conducted a descriptive analysis of the status of adolescent healthcare access and utilization during COVID-19. Next, we examined using multivariate ordered logistic regressions how staff availability and adolescent health (AH) service provision modalities influenced AH service utilization in terms of the average number of adolescents served per week during compared to before the pandemic. We also conducted a complementing qualitative analysis of the challenges and corresponding adaptive solutions to ensuring continuity of AH services in facilities. RESULTS: We find that two months into the pandemic, 79% of adolescent-friendly trained staff were reporting for duty and 64% of facilities reported no staff disruptions. However, only 13% of facilities were serving the same number of adolescents or greater than before COVID-19. The use of more modalities for AH service provision (including telehealth) by facilities was significantly associated with increased likelihood to report serving the same number of adolescent or greater than before COVID-19 compared to those who used only one modality. CONCLUSION: Investments in multiple modalities of care provision, such as telehealth could improve AH services utilization and help sustain connection with adolescents during shocks, including future outbreaks or other stressors that limit physical access to health facilities.

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.

Using a mixed-methods approach to adapt an HIV stigma reduction to address intersectional stigma faced by men who have sex with men in Ghana.

INTRODUCTION: In Ghana, men who have sex with men (MSM) are estimated to be 11 times more likely to be living with HIV than the general population. Stigmas at the intersection of HIV, same-sex and gender non-conformity are potential key drivers behind this outsized HIV disease burden. Healthcare workers (HCWs) are essential to HIV prevention, care and treatment and can also be sources of stigma for people living with HIV and MSM. This article describes the process and results of adapting an evidence-based HIV stigma-reduction HCW training curriculum to address HIV, same-sex and gender non-conformity stigma among HCWs in the Greater Accra and Ashanti regions, Ghana. METHODS: Six steps were implemented from March 2020 to September 2021: formative research (in-depth interviews with stigma-reduction trainers [n = 8] and MSM living with HIV [n = 10], and focus group discussions with HCWs [n = 8] and MSM [n = 8]); rapid data analysis to inform a first-draft adapted curriculum; a stakeholder adaptation workshop; triangulation of adaptation with HCW baseline survey data (N = 200) and deeper analysis of formative data; iterative discussions with partner organizations for further refinement; external expert review; and final adaptation with the teams of HCWs and MSM being trained to deliver the curriculum. RESULTS: Key themes emerging under four immediately actionable drivers of health facility intersectional stigma (awareness, fear, attitudes and facility environment) informed the adaptation of the HIV training curriculum. Based on the findings, existing curriculum exercises were placed in one of four categories: (1) Expand-existing exercises that needed modifications to incorporate deeper MSM and gender non-conformity stigma content; (2) Generate-new exercises to fill gaps; (3) Maintain-exercises to keep with no modifications; and (4) Eliminate-exercises that could be dropped given training time constraints. New exercises were developed to address gender norms, the belief that being MSM is a mental illness and stigmatizing attitudes towards MSM. CONCLUSIONS: Getting to the "heart of stigma" requires understanding and responding to both HIV and other intersecting stigma targeting sexual and gender diversity. Findings from this study can inform health facility stigma reduction programming not only for MSM, but also for other populations affected by HIV-related and intersectional stigma in Ghana and beyond.

Leaving no one behind: targeting mobile and migrant populations with health interventions for disease elimination-a descriptive systematic review.

BACKGROUND: Mobile and migrant populations (MMPs) pose a unique challenge to disease elimination campaigns as they are often hard to survey and reach with treatment. While some elimination efforts have had success reaching MMPs, other campaigns are struggling to do so, which may be affecting progress towards disease control and elimination. Therefore, this paper reviews the literature on elimination campaigns targeting MMPs across a selection of elimination diseases-neglected tropical diseases, malaria, trypanosomiasis, polio, smallpox, and rinderpest. METHODS: Through a systematic review process following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, a three-person review team identified papers from databases, conference records, and citation searches using inclusion/exclusion criteria. Papers were divided into three key outcome domains during the synthetization process: (1) MMP movement patterns in East Africa including reasons for movement and consequences in terms of health outcomes and healthcare access; (2) MMP contribution to the transmission of disease across all geographies; (3) surveillance methods and treatment interventions used to implement programming in MMPs across all geographies. Experts in the field also provided supplemental information and gray literature to support this review. RESULTS: The review identified 103 records which were descriptively analyzed using the outcome domains. The results indicate that in East Africa, there are various motivations for migration from economic opportunity to political unrest to natural disasters. Regardless of motivation, mobile lifestyles affect health service access such that MMPs in East Africa report barriers in accessing healthcare and have limited health knowledge. Often lower service delivery to these populations has resulted in higher disease prevalence. A minority of articles suggest MMPs do not pose challenges to reaching disease control and elimination thresholds. Finally, the literature highlighted surveillance methods (e.g., using satellite imagery or mobile phone data to track movement, participatory mapping, snowball sampling) and intervention strategies (e.g., integration with animal health campaigns, cross-border coordination, alternative mass drug administration [MDA] methods) to implement health interventions in MMPs. CONCLUSIONS: Ultimately, the literature reviewed here can inform programmatic decisions as the community attempts to reach these never treated populations. SYSTEMATIC REVIEW REGISTRATION: The protocol for this manuscript was registered with the International Prospective Registry of Systematic Reviews (PROSPERO) (No. CRD42021214743).

Reported health and social consequences of the COVID-19 pandemic on vulnerable populations and implemented solutions in six West African countries: A media content analysis.

Coronavirus has spread worldwide with over 140 million cases and resulting in more than 3 million deaths between November 2019 to April 2021, threatening the socio-economic and psychosocial stability of many families and communities. There has been limited research to understand the consequences of COVID-19 on vulnerable populations in West Africa, and whether such consequences differ by countries' previous experience with Ebola. Using a media analysis of leading online news sources, this study identified the populations particularly vulnerable to the threats of the COVID-19 pandemic, described the consequences of COVID-19 experienced by these populations, and reported on the solutions to address them. All articles from the selected news sources published between January 1 and June 30, 2020 on 6 West African countries were imported into Dedoose. A total of 4,388 news articles were coded for excerpts on vulnerable populations, only 285 excerpts of which mentioned the existing effects of COVID-19 on vulnerable populations or implemented solutions. News articles from countries with past experience with Ebola were more likely to mention the pandemic's effects on vulnerable populations, especially on incarcerated people. Vulnerable groups were reported to have experienced a range of effects including economic disruptions, heightened domestic and sexual abuse, arbitrary arrests, health care inaccessibility, and educational challenges throughout the pandemic. With implications for the achievement of the Sustainable Development Goals (SDG) for 2030 in West Africa, these countries should consider and focus more strategic efforts on vulnerable populations to overcome their fight against the COVID-19 pandemic and to achieve the SDG for 2030.