New Tools Aim to Measure and Reduce Hearing Loss Stigma

The global burden of hearing loss is vast, impacting millions and affecting everything from personal relationships to job prospects and mental health. To address this complex issue, the Lancet Commission on Hearing Loss (LCHL) was established with the mission to reduce the worldwide impact of hearing loss. This initiative seeks to accelerate solutions that tackle not only medical challenges but also social barriers that hinder hearing health.

The LCHL has prioritized addressing stigma as a fundamental part of improving hearing health worldwide. The commission collaborates with organizations across countries and disciplines to reduce the global disability burden linked to hearing loss, particularly within marginalized communities, where stigma may be especially severe.

Jessica West, PhD, MPH, a medical instructor in the Department of Head and Neck Surgery & Communication Sciences, was invited to join the subgroup due to her expertise spanning medical sociology, hearing sciences, stigma, and public health. Her work with the LCHL has included assisting with the literature review, contributing to the preliminary development of the stigma assessment tools, and co-authoring key papers describing the creation and validation of these tools.

For d/Deaf or hard of hearing (d/DHH) people, stigma is an obstacle with broad implications.

“Stigma is a recognized barrier to adjustment to living with hearing loss, seeking help for hearing loss, and adoption and use of assistive hearing devices such as hearing aids,” she says.

The lack of stigma measurement tools, she notes, has hindered efforts to systematically tackle this issue, making the work of the LCHL’s stigma subgroup particularly vital.

Global Partnerships to Define Stigma’s Scope

Hearing loss stigma manifests itself in multiple ways, affecting whether people seek or even accept help. These stigmas can broadly be categorized into the main types:

• Anticipated stigma (fear of future judgment or bias)
• Perceived stigma (belief that others hold negative stereotypes)
• Internalized stigma (personal acceptance of negative stereotypes)
• Experienced stigma (being treated unfairly or discriminated against)
• Observed stigma (hearing about or witnessing discrimination towards others)
• Secondary stigma (stigma faced by those close to stigmatized individuals, such as family or friends)

Each form can affect individuals and their healthcare choices in unique ways.

“For example, a person who denies developing hearing loss may do so out of fear that others will treat them differently,” Dr. West says. "Or they may take on and accept others’ beliefs that hearing loss or hearing aids make them appear unattractive, unintelligent, or old.”

Such beliefs can lead people to hide their condition or refuse necessary accommodations, which in turn affects their quality of life and health outcomes.

Drawing on research and expertise from other stigmatized health conditions, the LCHL developed tools that measure stigma among d/DHH people from diverse backgrounds.

Alongside partners such as RTI International, Gallaudet University, and organizations in Ghana, the LCHL is working to bring measurable, culturally relevant insights into the real-life impact of stigma.

Bridging Gaps in Hearing Care

Stigma measurement tools aim to transform patient care by giving providers a way to recognize and mitigate stigma’s impact on their patients. Dr. West says this could be especially beneficial for people from diverse backgrounds or those with limited healthcare access, as stigma’s effects often vary by socioeconomic and cultural factors.

“Patients from underserved communities may experience more pronounced internalized or anticipated stigma due to limited awareness or access to educational resources about hearing healthcare,” she says. “On the other hand, individuals with greater access to care may still experience perceived stigma, where societal views about hearing loss or aids negatively affect their willingness to seek help.”

Understanding these nuances allows providers to adopt more inclusive and empathetic care practices, fostering better patient-provider relationships.

The practical applications of these tools extend to patient education as well. Clinicians can use data from stigma measurements to develop educational resources that debunk common myths and misperceptions about hearing aids or hearing loss, helping patients feel more at ease in seeking help. By addressing stigma directly in consultations, providers can encourage more patients to engage openly in their care.

Next Steps in Reducing Hearing Loss Stigma

The journey to reduce hearing loss stigma doesn’t end with the creation of measurement tools. These resources will enable ongoing research and continuous monitoring of stigma’s evolving impact on patient care.

“Over time, the data collected can be used to track changes in societal attitudes toward hearing loss, identify populations at increased risk for negative outcomes due to stigma, measure the effectiveness of stigma reduction interventions, and further refine interventions,” Dr. West says.

The tools have already attracted interest from research and clinical groups globally, reflecting a growing acknowledgment of stigma’s role in hearing healthcare. With this knowledge, healthcare providers and researchers alike can build targeted programs that improve patient engagement, reduce disparities in care, and support people in navigating the social aspects of hearing loss.

Ultimately, the LCHL and its collaborators envision a future where stigma no longer prevents patients from accessing necessary healthcare or limits their potential.