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HEARS: Hearing Health Equity through Accessible Research & Solutions

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Version 2 2023-07-24, 16:19
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posted on 2023-07-24, 16:19 authored by Carrie Nieman

Abstract

Hearing Health Equity through Accessible Research and Solutions (HEARS) is an accessible, affordable hearing care program delivered by trained older adult community health workers. Based within the Johns Hopkins Cochlear Centre for Hearing & Public Health in Baltimore Maryland, the HEARS study began in 2014 with local nonprofits providing subsidized housing to low-income older adults. Initially a pilot study and then a multisite trial, the HEARS study has been guided by a Community Advisory Board since its inception. Every aspect of the study was completed in the community, from hearing screening to program delivery by older adult community health workers and follow-up. Meaningful inclusion of community representatives throughout the study - particularly older adults from low-income and historically marginalized communities - has translated to the largest trial to date in the United States of low-income and African American older adults with hearing loss.

Introduction

In partnership with community representatives and collaborators at Johns Hopkins Schools of Public Health and Nursing, we developed the HEARS program in 2013 and founded the Community Advisory Board in 2014. The HEARS program is a <2-hour session where an older adult with hearing loss learns to use a low-cost amplification device with an older adult community health worker. The HEARS Community Advisory Board includes representatives from affordable housing providers Weinberg Senior Living (CHAI Inc.) and Catholic Charities, and the nonprofit Hearing and Speech Agency (HASA), who provide clinic-based hearing care, space, and audiologists to train the community health workers. Service coordinators from the affordable housing facilities worked with the research team for recruitment and retention. The older adult community health workers were residents of the affordable housing facilities and provided services within their buildings and at sites throughout Baltimore. From 2014-2016, Carrie Nieman led the initial pilot study that demonstrated feasibility. This was followed by a larger randomized controlled trial from 2018-2022. Both studies were based out of the Johns Hopkins Cochlear Centre for Hearing & Public Health.

Who should benefit?

Hearing loss affects approximately 1.59 billion individuals globally, equating to 20.3% of the global population. Age-related hearing loss is the most common form of hearing loss by far. Among individuals 70 years and older, 66% have clinically significant hearing loss. Hearing loss is the third leading cause of years lived with disability globally and equates to an estimated economic burden of US$980 billion per year globally. Age-related hearing loss has been independently associated with significant negative outcomes, including as the largest potentially modifiable risk factor for dementia. Access to hearing care is an essential tool for aging well. 

Despite the role hearing loss plays in healthy aging, hearing care disparities exist and many older adults go untreated, particularly in low-resource settings. In the U.S., 20% of older adults with hearing loss use hearing aids. This is much lower in minoritized and historically marginalized communities, where only 10% of low-income and racial and ethnic minority older adults with hearing loss use hearing aids. Applied to Baltimore, where our current efforts are based, specific numbers on the prevalence of hearing aid use are unavailable. However, almost 62% of older adults in Baltimore identify as Black or African American and racial and ethnic minority older adults have lower rates of hearing aid use. Around 14% of Baltimore's older adults live below the poverty level and approximately 25% of older adults in Baltimore have less than a high school diploma. Low education levels, along with older age and low income, place older adults at risk for inadequate health literacy. Low levels of health literacy are a barrier to obtaining hearing care through traditional channels. A primary driver for our community partners Weinberg Senior Living and Catholic Charities joining the HEARS studies came from repeatedly identifying hearing health as an unmet need for older adults living in their affordable housing facilities. As some of the largest organizations providing housing to Baltimore-area older adults, these nonprofits were eager to partner with the research team to bring new resources to their residents. The Community Advisory Board shares a vision of hearing health equity and the critical importance of ensuring all older adults have access to the tools they need to age well. The HEARS program aims to be a scalable and sustainable solution that can be expanded beyond Baltimore and delivered in other low-resource settings, including LMICs.

Engagement

The HEARS program was developed in 2013-2014 as a multidisciplinary effort with input from older adults with hearing loss. The HEARS Community Advisory Board formed in 2014 at the start of the pilot study of the HEARS program. The Board meets quarterly and is composed of leaders from our community partners, including service coordinators from affordable housing facilities Weinberg Senior Living and Catholic Charities, leadership from nonprofit hearing care clinic Hearing and Speech Agency/HASA, and, most importantly, residents from the affordable housing facilities and the older adult community health workers. An additional member of the Board is a human-centered design practitioner, who provides guidance on how to engage as a Board and generate creative solutions, from increasing recruitment to retaining participants in a pandemic. Beyond open discussions, board meetings entail a range of activities focusing on building trust and strengthening relationships, from games and parties to skits and award ceremonies. 

Beyond the Community Advisory Board, the HEARS studies engage participants themselves throughout the process. For example, at the end of the pilot study, all participants were invited to a graduation ceremony where study findings were shared, an open forum was conducted to invite feedback and questions, and they each received a certificate of completion. Graduates of the pilot study were then recruited to work alongside the research team in designing and testing the program to train older adults to serve as HEARS community health workers. The first cohort of HEARS community health workers were trained, including individuals who were recognized leaders within their communities - some of whom have hearing loss themselves. Community representatives, including older adults with hearing loss and the older adult community health workers, provided substantial input throughout the studies. The community organizations and representatives served as gatekeepers dictating how we proceeded and how we continue to work with communities by granting us access. Representatives influenced which communities to prioritize in terms of recruitment, emphasizing those with the greatest need. They provided input regarding recruitment flyers in terms of who was featured and how. The representatives influenced how we shared results and how we are planning to share results of the larger trial. The Community Advisory Board and participants are recognized in each publication and presentation and included as co-authors whenever possible.

Research

Age-related hearing loss is almost universal, yet few older adults have access to hearing care, specifically hearing aids. Globally, the burden is greatest in countries with the lowest resources and, even in high-resource countries such as the U.S., significant barriers to hearing care exist for older adults. Barriers to care include high costs (the average cost of hearing aids in the U.S. is US$4,700), lack of insurance coverage, the stigma associated with wearing hearing aids, and limited awareness of available options for hearing care. For older adults with limited financial resources, hearing care is often out of reach. These barriers are what the HEARS program seek to address and mirror the concerns raised by community representatives. This informed the development of a hearing care program that is delivered entirely within a community setting in under 2 hours, using low-cost, over-the-counter hearing technology provided by a trusted peer. The results of the larger multisite HEARS trial were recently published in JAMA. 3 months after the HEARS program, participants reported improvements in communication similar in magnitude to improvements found for gold standard hearing aids fit by an audiologist. Discussions with the Community Advisory Board, interviews, and focus groups echo this success. The HEARS older adult community health workers routinely comment on the power of working with other older adults with shared lived experiences: “The seniors needed someone that they could relate to, that could understand them versus someone that was just pushing a product.” The older adult community health workers also benefitted, noting the importance of empowering older adults – “we enjoyed teaching as seniors. I think it did a lot for us to be able to do something at this level at my age.” 

Despite the lower rates of hearing aid use among low-income and racial and ethnic minority older adults, few studies are devoted to understanding and delivering hearing care to older adults from historically marginalized communities. In the U.S., only 5 studies in the past 3 decades have included >30% racial or ethnic minority representation. 3 of these were led by members of the HEARS team. The recently published HEARS trial is the largest hearing-related trial to date of low-income and African American older adults with hearing loss in the U.S.

Funding

National Institutes of Health (NIH) - National Institute on Deafness and Other Communication Disorders (NIDCD) National Academy of Medicine (NAM) - National Academy of Medicine Healthy Longevity Global Competition

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