Measuring Hearing Loss Stigma is the Starting Point for Eliminating It

People who are d/Deaf* or hard of hearing (d/DHH) may encounter stigma in their everyday lives – checking out at the grocery store, engaging with their doctor during appointments, applying for jobs, or sitting at the dinner table in the company of family and friends.

Hearing loss stigma can manifest in many forms – as a disparaging comment or as a more subtle offense, such as leaving a person who is d/DHH out of a conversation. It could manifest as a person’s trepidation for social interaction or belief that others will treat them differently because of their hearing status or use of hearing aids.   

Stigma is a complex relational phenomenon in which people who possess some trait or identity, visible or invisible, are regarded as undesirable or of lesser value than those who do not possess the trait or identity. As social scientists dedicated to improving the human condition, our research team wanted to enable the quantification of different stigmas affecting people who are d/DHH as well as their families, care partners, and interactions with health care providers. 

The Impact of Hearing Loss Stigma 

The World Health Organization (WHO) identifies “ear and hearing care literacy and the stigma related to hearing loss” as a critical challenge confronting the hearing health care profession today. WHO estimates that more than 700 million people, or one-tenth of the world’s population, will have hearing loss requiring rehabilitation by the year 2050. Expansion of and engagement with hearing rehabilitation services will be paramount to addressing the growing needs of the population. Stigma is a commonly cited reason why people might deny a hearing loss or postpone seeking hearing health care. Stigma associated with hearing aids has led some to outright reject them. Stigma can also lead to social isolation, mental health disorders, and avoidance of seeking health care services generally or specific to hearing rehabilitation. 

At the behest of the Lancet Commission on Hearing Loss, in 2020, Duke University and RTI International convened an interdisciplinary team of social scientists and hearing health care experts to develop a set of measures for types of d/DHH stigma for different segments of the population affected by their own or another person’s hearing loss. Our principal investigator, Dr. Laura Nyblade, an RTI International Fellow and globally recognized expert on health-related stigma, led a systematic process for developing and preliminarily validating the new measures.

Our results were recently published in a special supplement for Ear and Hearing titled Measure to Understand: Tools to Assess d/Deaf and Hard of Hearing Stigma. In an editorial introducing the supplement, Dr. Kathleen M. Pichora-Fuller, the guest editor, frames the supplement around an urgency in the hearing health care profession to address stigma as a barrier to hearing health care engagement. She hopes the suite of measures will serve as a “catalyst for change” toward reducing stigma and ensuring equitable access to hearing health care around the globe. 

The measures will provide a way for scientists and health care providers to quantitatively assess a variety of ways stigma occurs, ranging from a direct experience and perceptions of being treated differently than others to internalized beliefs about oneself as a person who is d/DHH. Importantly, the measures will allow researchers to draw attention to the social aspects of being d/DHH that impact people and inform stigma-reducing interventions, such as trainings for healthcare providers that will improve quality of care for d/DHH patients. Such efforts will lead to enhanced quality of life and reduced barriers to hearing health care services for the 2.5 billion people globally who will experience some degree of hearing loss by the year 2050. 

Developing the Measures 

To develop the measures, our team used an iterative, four-stage process that comprised a literature review of more than 200 existing stigma measures, a modified Delphi process to adapt measures for the d/DHH context, cognitive interviewing to further refine the measures, and psychometric testing of the measures with six segments of the population. In the interest of developing measures of stigma relevant in both high-income and low- and middle-income countries, we concurrently tested the instruments in the United States and Ghana. The detailed methods for developing these scales appear in Stockton et al., the introductory article to the special supplement.

The RTI team included Dr. Nyblade, co-chair of the Stigma Working Group, Ms. Rachel Stelmach, Dr. Elizabeth Troutman Adams, Ms. Khalida Saalim, Mr. Adam Preston, and Dr. Gabriel Madson. Our team consulted closely with Dr. Howard Francis, a neurotologist, co-chair of the Stigma Working Group and Chair of the Duke University Head and Neck Surgery & Communication Sciences (HNS&CS) Department, Dr. Sherri Smith who is the lead audiologist at Duke, and Dr. Jessica West a medical sociologist also of Duke. We also collaborated with interdisciplinary experts in sociology, communication, aging and geriatrics, and psychometric testing at Georgetown University, the University of California-San Francisco, University of North Carolina-Chapel Hill, Gallaudet University, and the Kwame Nkrumah University of Science and Technology, Kumasi, Ghana. In Ghana, research was led by the Educational and Assessment Research Center, Accra and the Speech and Hearing Center, Accra.

Our efforts resulted in a comprehensive suite of measures to capture different dimensions of d/DHH stigma that manifest as experiences, perceptions, internalized beliefs, and anticipated treatment in different populations and social settings. First, Stelmach et al. report on the validation results for measures for perceived, internalized, and experienced stigma in four separate samples of people with lived experience of being d/DHH: 1) people who were d/DHH before they developed language (lifelong d/DHH) living in the U.S. (n=100); 2) people who were d/DHH (lifelong) living in Ghana (n=171); 3) people who became d/DHH after they developed language (acquired) living in the U.S. (n=219); and finally, 4) people who were d/DHH (acquired) living in Ghana (n=174). 

Saalim et al. report validation results for five scales measuring stigma from the perspectives of parents of children who are d/DHH, including observed, perceived, secondary (or associative), perceived secondary, and internalized stigma. Wallhagen et al. report the validation results for measures for use among care partners to people who are d/DHH to assess observed and perceived d/DHH stigma, as well as three types of secondary stigma. Adams et al. explore stigma in the context of health care settings by validating measures for health care provider perceived, enacted, secondhand experienced, and secondhand perceived stigma in a mixed sample of primary care providers and hearing care specialists. 

West et al. present the validation results for four measures of hearing device-related stigma, including a measure for anticipated hearing device-related stigma tested in samples of people who are d/DHH (lifelong) and people who are d/DHH (acquired). A measure for observed hearing device-related stigma was tested in samples of parents of people who are d/DHH, care partners to people who are d/DHH, and health care providers who treat people who are d/DHH. Finally, Nyblade et al. examine the intersectional stigmas of ageism and hearing loss, presenting the validation results for a measure for ageism in the context of hearing care.

In the preliminary validation presented in all articles, the scales met statistical thresholds and appeared to represent clear underlying constructs. Our findings suggest that these scales could prove useful in populations from different countries and with different lived experiences related to being d/DHH. In the final article of the special supplement, Stelmach et al. suggest additional validation work to further refine the scales for use in different contexts and outline a research agenda for the use of the new scales.

Future Applications Toward Reducing d/DHH Stigma

We envision these measures as being used to chart forward progress toward reducing d/DHH stigma and social barriers to hearing health care. The measures can assist intervention designers who want to track progress toward stigma-reduction goals and appropriately target their interventions to address the types of stigma relevant to a population of interest. Another important application of the measures will be examining how different forms of stigma obstruct the pathway to hearing health care and audiologic rehabilitation. The measures can also render insight into how intervening on stigma can influence other related outcomes for people who are d/DHH, such as improvements in mental health and willingness to engage in social interaction. We note that further validation and refinement of the measures are needed to affirm their usefulness in various social, cultural, and economic settings. 

Participant Appreciation

The success of our research depended on the generosity of the d/DHH communities with whom we engaged in conversations about the realities of stigma in their lives. Perhaps the most essential part of our work was learning about confrontations with d/DHH stigma and the nuanced ways in which d/DHH stigma is revealed in different social contexts. However, we were equally astounded by the resilience, optimism, and unique strengths of people who are d/DHH in overcoming barriers to communication and managing encounters with stigma in daily life. We sincerely thank all the participants who graciously shared their experiences with us at each stage of the research.

We invite our colleagues to view the open access supplement in Ear and Hearing.

*We use d/Deaf as an encompassing term to acknowledge and respect the diversity in how individuals identify, including those who are culturally Deaf, those who do not identify with the Deaf community, and those who prefer to describe their hearing in other ways.