Editorial for the Special Supplement on “Measure to understand: Tools to assess d/Deaf and hard of hearing stigma”: Assessment to Guide Stigma-Reducing Changes in Hearing Healthcare and Society

In 2022, a special supplement of Ear and Hearing was published to promote inclusion, diversity, equity, and accessibility in research on hearing and hearing healthcare (Ryals & Pichora-Fuller 2022). Following on the broader inclusion, diversity, equity, and accessibility initiative, the present special supplement “Measure to understand: Tools to assess d/Deaf and hard of hearing stigma” introduces research to develop a suite of measures of stigma as a necessary step toward achieving stigma-reducing changes to benefit people who are deaf, Deaf or hard of hearing (d/DHH). For decades, stigma has been recognized as a barrier to help-seeking for hearing loss (Southall et al. 2010; Wallhagen 2010), adoption and use of hearing aids (Jenstad & Moon 2011; Ruusuvuori et al. 2021; Ekberg & Hickson 2023), and adjustment to living with hearing loss (Hétu 1996; Hallberg 1999; Noble 2009). Over the life course, stigma can affect many aspects of the everyday lives of people with impaired hearing and their families, pervading many personal and social contexts (e.g., family relationships, education, employment, healthcare, and community participation). There is abundant evidence of the importance of stigma as a problem, but hearing healthcare providers continue to search for solutions (Pichora-Fuller 2023; Taylor & Jensen 2024) and researchers continue to seek knowledge of the mechanisms underpinning d/DHH stigma (Ekberg & Hickson 2023). Indeed, the World Report on Hearing (World Health Organization 2021) identified stigma as one of the three key categories of challenges facing hearing healthcare. Tedros Ghebreyesus, World Health Organization Director-General, opened the forward of the World Report on Hearing (2021) by stating that “Hearing loss has often been referred to as an ‘invisible disability’, not just because of the lack of visible symptoms, but because it has long been stigmatized in communities and ignored by policy-makers.” His words were echoed in the focus of World Hearing Day 2024 on the need to change stigmatizing mindsets related to hearing loss as a crucial step toward ensuring equitable access to ear and hearing care (World Health Organization 2024). How can stigma-reducing changes in hearing healthcare be achieved? Multiple factors continue to impede progress in research, practice, and policy. Progress in developing, implementing, and evaluating new solutions or models to address stigma in hearing healthcare could be facilitated by (1) strengthening interdisciplinary conceptual and theoretical foundations, (2) shifting from a clinical view of individuals to a more social perspective on stigma, and (3) applying lessons learned in other health domains to design outcome measures to evaluate the effectiveness of interventions to reduce d/DHH stigma. Measurement tools to assess stigma are needed to guide innovations in care and enable the evaluation of change. Future research will depend on having a suite of well-characterized validated measures that can be used to explore many aspects of d/DHH stigma. Future research is needed to characterize the nature and magnitude of stigma toward people who are d/DHH and those with whom they interact, to understand the associations between different types of stigma in the contexts of individuals and their relationships, to determine how types of stigma are related to health and other life outcomes, to develop and evaluate interventions to reduce stigma, and to develop models of d/DHH stigma that will guide the implementation of stigma-reducing changes in practice and policy. The papers in this special supplement describe an ambitious project to design and characterize the psychometrics of a suite of new measures of d/DHH stigma, thereby setting the stage for the future research needed to advance solutions to reduce stigma as a major problem in hearing healthcare and in society. The collection of papers is the result of interdisciplinary collaborative teamwork undertaken for the Lancet Commission on Hearing Loss (LCHL; Wilson et al. 2019) by the LCHL measures, models, and stigma-reduction subgroup. International experts in hearing healthcare joined forces with experts in public health specializing in research on stigma and discrimination. Under the leadership of Dr. Laura Nyblade, research at RTI International has incorporated psychological, sociological, cultural, and political dimensions in designing measurement tools that have been applied to develop and evaluate stigma-reducing programs and policies for various health domains (e.g., HIV, breast cancer, cervical cancer) in various low- and middle-income countries (e.g., sub–Saharan Africa, South and South-East Asia, the Caribbean) and the United States. The papers in the special supplement reflect advances in interdisciplinary knowledge based on ongoing exchanges among the authors to establish shared foundational concepts and theories regarding stigma as a relational phenomenon, the social process of stigmatization, types of stigma, the manifestations of discrimination, and intersections amongst stigmas based on multiple characteristics (e.g., age, gender, race, disability). The papers also reflect how the data gathered from participants in the project (and insightful feedback from reviewers) provided the team with new insights into the complexities of individual and social perspectives on d/DHH stigma. Most importantly, we hope that the papers will be a catalyst for change and that progress to reduce stigma will advance as readers reflect on the papers describing how the team undertook the design and preliminary evaluation of scales to assess d/DHH stigma. More work will be needed to refine and standardize measures of d/DHH stigma that can be used in research to determine if new interventions effectively reduce stigma as a key barrier to improvements in clinical practice and social policy. The special supplement includes a set of eight papers. While each paper stands alone, together they provide a comprehensive report on the project undertaken for the LCHL. The first paper (Stockton et al. pp. 4S–16S, this issue) introduces the project, including theoretical background and working definitions of types of stigma, an overview of the literature on d/DHH stigma, the motivation for the project, a description of the mixed-methods sequential design used to develop measures of stigma for different participant groups, and the preliminary measures that resulted from the development stage of the project. The following six papers report on the psychometric characteristics for specific subsets of the new measures administered to specific participant groups which yield a suite of new scales. The final paper explores possible applications of the measures. The second paper in the special supplement (Stelmach et al. pp. 17S–25S, this issue) anchors the project with results from Ghana (a low-middle income country; N = 345) and the United States (a high-income country; N = 319) for different types of stigma (experienced, perceived, internalized) faced by diverse adults who are d/DHH. Responses to the same questions were gathered from different populations to investigate the generalizability of the new measures and their potential use for comparisons across different settings and populations. Given the likely intersections of stigma with cultural and socioeconomic factors, Ghana and the United States were selected for the study so that the generalizability of the measures across nations could be investigated. Furthermore, the new measures were designed to be generalizable across degrees of audiometric hearing loss, age of onset of hearing impairment, and whether individuals use spoken and/or signed language for communication. Note that the overall term d/DHH was chosen to be inclusive in describing individuals who are culturally Deaf, deaf individuals who do not identify with the Deaf community, and those who are hard of hearing (see Stockton et al. pp. 4S–16S, this issue). Participants indicated how they identified by selecting from a set of options (person with hearing, person with hearing loss, hard of hearing, deaf, Deaf, Deaf blind, other). The term selected by the individual to indicate how they identified was used to frame the items subsequently presented to measure stigma. When measures were administered in-person, research staff interacted with participants according to how they identified and whether they used spoken or signed language. Three types of stigma were defined and measured in this anchor paper. Experienced stigma manifests as (possibly unconscious) interpersonal acts of discrimination. Perceived stigma pertains to an individual’s perception or understanding of the prevalence of stigma and how stigmatized individuals or groups are treated in society. Internalized stigma (also known as self or affiliative stigma) happens when individuals accept and internalize stigma as true and valid for themselves. The final six-item experienced, seven-item perceived, and five-item internalized scales performed well as unidimensional measures across all the samples. The next three papers report on the psychometric characteristics for specific sub-sets of the new measures administered to three specific participant groups who interact with people who are d/DHH: care partners of adults, parents of children, and health care professionals. Care partners (spouses, partners, adult children, siblings, and friends) of adults who are d/DHH in the United States (N = 151) responded online to five sets of items. One set of items concerned observed stigma (or witnessed stigma) based on hearing about or witnessing interpersonal discrimination toward others; another set asked about the care partners’ views of perceived stigma affecting the person who is d/DHH. Respectively, another three sets of items were used to measure the care partner’s own secondary (or associative or courtesy or third-party) experienced stigma, perceived stigma, and internalized stigma resulting from being associated with the person who is d/DHH (Wallhagen et al. pp. 35S–41S, this issue). Each of the final five scales performed well in assessing a single factor: two scales measured the care partner’s rating of observed (eight items) and perceived (six items) stigma directed at the person who is d/DHH and three scales measured the care partner’s secondary experienced stigma (seven items), secondary perceived stigma (four items) and secondary internalized stigma (nine items). Data gathered from parents of children who are d/DHH in the United States (n = 100; online) and Ghana (n = 173; in-person) yielded five final scales to measure observed child stigma (seven items), perceived child stigma (eight items), experienced parental secondary stigma (eight items), perceived parental secondary stigma (five items), and internalized parental stigma (seven items), with all scales performing well and similarly across both country samples (Saalim et al. pp. 26S–34S, this issue). Data gathered from health care professionals (HCP; half audiologists/otolaryngologists, half family physicians) in the United States (N = 204; online) yielded four scales of stigma concerning persons who are d/DHH that each performed well in assessing a single factor: provider-perceived stigma (eight items; HCPs’ perceptions of negative attitudes and stereotypes toward individuals in society who are d/DHH); secondhand patient-perceived stigma (eight items; perceptions of negative attitudes and stereotypes reported by patients during clinical encounters); provider-enacted stigma (six items; self-reported subtle or indirect acts of stigma during clinical encounters); and secondhand patient-experienced stigma (10 items; acts of stigma reported by patients during clinical encounters) (Adams et al. pp. 42S–52S, this issue). The sixth paper in the special supplement reports on the measurement of stigma related to the use of hearing devices in four different participant groups tested online in the United States (West et al. pp. 53S–61S, this issue). In this study, perceived, observed, and anticipated stigma (the fear or expectation that stigma will happen) were measured as appropriate in the different participant groups. Four stigma scales performed well in their respective populations: an eight-item scale of anticipated hearing device-related stigma (eight items) in participants who reported using hearing devices (N = 149; half who became d/DHH before they developed language (lifelong d/DHH)) and half who became d/DHH after they developed language (acquired d/DHH)); a five-item scale of parental perceptions and observations of stigma experienced by their children who use hearing devices (N = 79), a nine-item scale of care partner perceptions and observations of stigma experienced by the person they care for who uses a hearing device (N = 108), and an eight-item scale of health care provider perceptions and reports to them of stigma experienced by patients using hearing devices (N = 203). The seventh paper reports on measures of ageism administered online in the United States to four groups of participants: adults 60 years of age or older with acquired d/DHH (N = 146), care partners of adults 60 years of age or older with acquired d/DHH (N = 72), HCPs (N = 203), and a sample (N = 312) from the general population (Nyblade et al. pp. 62S–69S, this issue). The final scales performed well, with two factors for older adults, one measuring social aspects of stigma (nine items) and the other measuring employment discrimination (four items), and with scales for social aspects of stigma for care partners (nine items), health care providers (11 items), and the general public (10 items). The final paper explores possible applications of the measures of d/DHH stigma and three main directions for future research (Stelmach et al. pp. 70S–78S, this issue). First, further validation of the scales developed and characterized in this project should be undertaken. Second, the scales could be used to establish baselines and drive the development of stigma-reducing interventions for different populations and contexts. Third, the scales could be used to evaluate the (comparative) effectiveness and cost-benefits of new interventions. Ultimately, such evidence can then support advocacy efforts and changes in healthcare systems and social policies to improve the lives of people who are d/DHH. This special supplement of Ear and Hearing makes a landmark contribution by positioning assessment as a prerequisite to progress in finding solutions that may respond to the 2024 World Hearing Day call for changing mindsets to reduce d/DHH stigma. In parallel, a special issue published in the International Journal of Audiology in 2023 makes a complementary landmark contribution by reporting on a model for stigma based on a project to examine how stigma is experienced by adults with hearing loss and their families, how it is managed in everyday life, and how it influences decisions about hearing aid use (Ekberg & Hickson 2023). The project of Hickson and colleagues was conducted in high-income English-speaking countries (Australia, UK, the United States) and focused on the development of a model based on qualitative data from dyads and quantitative survey data gathered from older adults (50+ years of age) with hearing loss, their family members and HCP involved in providing hearing rehabilitation. In contrast, the project of Nyblade et al. (62S–69S) reported here focused on the development of a comprehensive suite of measurement tools covering different types of d/DHH stigma based on qualitative and survey data gathered in a high-income country (the United States) and a low-middle income country (Ghana) from a relatively large and diverse sample of people who are d/DHH (including those using spoken and signed language) and from different samples of the significant others of people who are d/DHH (caregivers of adults, parents of children, and HCP including hearing specialists and family physicians). Taken together, the completion of these two large projects in 2023–2024 heralds a new era for progress in achieving the reduction of d/DHH stigma.