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.

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.

Financial burdens of HIV and chronic disease on people living with HIV in Côte d'Ivoire: A cross-sectional out-of-pocket expenditure study.

BACKGROUND: Although people living with HIV in Côte d'Ivoire receive antiretroviral therapy (ART) at no cost, other out-of-pocket (OOP) spending related to health can still create a barrier to care. METHODS: A convenience sample of 400 adults living with HIV for at least 1 year in Côte d'Ivoire completed a survey on their health spending for HIV and chronic non-communicable diseases (NCDs). In addition to descriptive statistics, we performed simple linear regression analyses with bootstrapped 95% confidence intervals. FINDINGS: 365 participants (91%) reported OOP spending for HIV care, with a median of $16/year (IQR 5-48). 34% of participants reported direct costs with a median of $2/year (IQR 1-41). No participants reported user fees for HIV services. 87% of participants reported indirect costs, with a median of $17/year (IQR 7-41). 102 participants (26%) reported at least 1 NCD. Of these, 80 (78%) reported OOP spending for NCD care, with a median of $50/year (IQR 6-107). 76 participants (95%) with both HIV and NCDs reported direct costs, and 48% reported paying user fees for NCD services. Participants had missed a median of 2 HIV appointments in the past year (IQR 2-3). Higher OOP costs were not associated with the number of HIV appointments missed. 21% of participants reported spending over 10% of household income on HIV and/or NCD care. DISCUSSION AND CONCLUSIONS: Despite the availability of free ART, most participants reported OOP spending. OOP costs were much higher for participants with co-morbid NCDs.

Gender and neglected tropical disease front-line workers: Data from 16 countries.

BACKGROUND: Delivery of preventive chemotherapy (PC) through mass drug administration (MDA) is used to control or eliminate five of the most common neglected tropical diseases (NTDs). The success of an MDA campaign relies on the ability of drug distributors and their supervisors-the NTD front-line workers-to reach populations at risk of NTDs. In the past, our understanding of the demographics of these workers has been limited, but with increased access to sex-disaggregated data, we begin to explore the implications of gender and sex for the success of NTD front-line workers. METHODOLOGY/PRINCIPAL FINDINGS: We reviewed data collected by USAID-supported NTD projects from national NTD programs from fiscal years (FY) 2012-2017 to assess availability of sex-disaggregated data on the workforce. What we found was sex-disaggregated data on 2,984,908 trainees trained with financial support from the project. We then analyzed the percentage of males and females trained by job category, country, and fiscal year. During FY12, 59% of these data were disaggregated by sex, which increased to nearly 100% by FY15 and was sustained through FY17. In FY17, 43% of trainees were female, with just four countries reporting more females than males trained as drug distributors and three countries reporting more females than males trained as trainers/supervisors. Except for two countries, there were no clear trends over time in changes to the percent of females trained. CONCLUSIONS/SIGNIFICANCE: There has been a rapid increase in availability of sex-disaggregated data, but little increase in recruitment of female workers in countries included in this study. Women continue to be under-represented in the NTD workforce, and while there are often valid reasons for this distribution, we need to test this norm and better understand gender dynamics within NTD programs to increase equity.

The costs of monitoring trachoma elimination: Impact, surveillance, and trachomatous trichiasis (TT)-only surveys.

BACKGROUND: Although trachoma causes more cases of preventable blindness than any other infectious disease, a combination of strategies is reducing its global prevalence. As a district moves toward eliminating trachoma as a public health problem, national programs conduct trachoma impact surveys (TIS) to assess whether to stop preventative interventions and trachoma surveillance surveys (TSS) to determine whether the prevalence of active trachoma has rebounded after interventions have halted. In some contexts, programs also conduct trachomatous trichiasis (TT)-only surveys. A few costing studies of trachoma prevalence surveys exist, but none examine TIS, TSS, or TT-only surveys. METHODOLOGY/PRINCIPAL FINDINGS: We assessed the incremental financial cost to the national program of TIS, TSS, and TT-only surveys, which are standardized cluster-sampled prevalence surveys. We conducted a retrospective review of expenditures and grant disbursements for TIS and TSS in 322 evaluation units in 11 countries between 2011 and 2018. We also assessed the costs of three pilot and five standard TT-only surveys in four countries between 2017 and 2018. The median cost of TIS and TSS was $8,298 per evaluation unit [interquartile range (IQR): $6,532-$10,111, 2017 USD]. Based on a linear regression with bootstrapped confidence intervals, after controlling for country, costs per survey did not change significantly over time but did decline by $83 per survey implemented in a single round (95% CI: -$108 --$63). Of total costs, 80% went to survey fieldwork; of that, 58% went towards per diems and 38% towards travel. TT-only surveys cost a median of $9,707 (IQR: $8,537-$11,635); within a given country, they cost slightly more (106% [IQR: 94%-136%]) than TIS and TSS. CONCLUSIONS/SIGNIFICANCE: The World Health Organization requires trachoma prevalence estimates for validating the elimination of trachoma as a public health problem. This study will help programs improve their planning as they assemble resources for that effort.

Gender equity in mass drug administration for neglected tropical diseases: data from 16 countries.

BACKGROUND: Gender equity in global health is a target of the Sustainable Development Goals and a requirement of just societies. Substantial progress has been made towards control and elimination of neglected tropical diseases (NTDs) via mass drug administration (MDA). However, little is known about whether MDA coverage is equitable. This study assesses the availability of gender-disaggregated data and whether systematic gender differences in MDA coverage exist. METHODS: Coverage data were analyzed for 4784 district-years in 16 countries from 2012 through 2016. The percentage of districts reporting gender-disaggregated data was calculated and male-female coverage compared. RESULTS: Reporting of gender-disaggregated coverage data improved from 32% of districts in 2012 to 90% in 2016. In 2016, median female coverage was 85.5% compared with 79.3% for males. Female coverage was higher than male coverage for all diseases. However, within-country differences exist, with 64 (3.3%) districts reporting male coverage >10 percentage points higher than female coverage. CONCLUSIONS: Reporting of gender-disaggregated data is feasible. And NTD programs consistently achieve at least equal levels of coverage for women. Understanding gendered barriers to MDA for men and women remains a priority.

Household water quantity and health: a systematic review.

While the quantity of water used in the home is thought to be an important determinant of health, much of the evidence relies on using water access as a proxy for quantity. This review examines the health effects of household water quantity using studies that directly measured water quantity. We searched MEDLINE, EMBASE, the Cochrane Library, Web of Science, and article reference lists. Eligible studies included experimental and observational studies that measured a difference in water quantity and quantified an association between water quantity and health outcomes. 21 studies, divided into six of the many possible water-quantity associated outcomes, met the eligibility criteria. Due to heterogeneity in designs, settings, methods, and outcomes, a meta-analysis was inappropriate. Overall results showed a positive association between water quantity and health outcomes, but the effect depended on how the water was used. Increased water usage for personal hygiene was generally associated with improved trachoma outcomes, while increased water consumption was generally associated with reduced gastrointestinal infection and diarrheal disease and improved growth outcomes. In high-income countries, increased water consumption was associated with higher rates of renal cell carcinoma and bladder cancer but not associated with type II diabetes, cardiac-related mortality, or all-cause mortality.