Exploring Health Challenges & Response Strategies Among Older Deaf Adults.
TimeFriday, April 1611:00am - 11:20am EDT
LocationPatient Safety Research and Initiatives
DescriptionAccording to the US Census, approximately 1 million people are “functionally deaf,” and over half of this group is over age 65 (Mitchell, 2006). These individuals are unable to hear normal conversation even with a hearing aid. Of these 500,000 older individuals, possibly as many as half, acquired their hearing loss much earlier in their life (Mitchell et al., 2006) and likely use American Sign Language (ASL) as their primary mode of communication. These older Deaf adults are aging with disability rather than aging into disability (Note: we use the convention of capitalizing D in ‘Deaf’ when referring to our participants who identify with the ASL-using Deaf Community). The exact number of older signing Deaf adults is still unknown due to national large-scale surveys using varying definitions of deafness and the difficulties estimating the number of users of ASL. However, the numbers are expected to grow as people are living longer than ever before and as more members of the Baby Boomer generation retire (U.S Census Bureau, 2018; WHO, 2018). Despite these rising numbers, the health needs of older Deaf signing adults remain highly understudied. To better serve this population, it is crucial to understand their unique health needs, both in terms of their self-management (e.g., managing medications) and interactions with the health care system (e.g., accessing services from healthcare professionals).
As a first step in this direction, we conducted a needs assessment study through semi-structured interviews with older adults (N = 60; age 60-79) who self-identified as Deaf or hard of hearing, had a hearing loss diagnosed prior to the age of 50, and who used ASL as their primary language for communication. Our aim was to understand the challenges that these older individuals, who have lived with deafness for decades, experience with their everyday activities. The interviews were conducted in ASL and covered a range of topics including performing activities outside the home, around the home, activities related to shopping and finance, transportation, basic daily activities, and health management. Each topic included 5-8 specific activities and participants were asked to rate the activities according to difficulty using a 3-point scale (1 = not at all difficult, 2 = a little difficult, 3 = very difficult, or N/A = not applicable). Herein we focus on the activities related to managing health, which included monitoring health, managing diet and nutrition, going to healthcare appointments, getting help in case of emergency, exercising, caring for others, and accessing healthcare information. To capture the frequently reported challenges and response strategies of older Deaf adults related to managing health, we conducted an in-depth evaluation of the interview transcripts from a subset of the sample (N=10; mean age = 71.9 years; range 60-79 years).
Preliminary content analyses indicate that challenges related to managing health primarily pertain to general aging-related physical limitations and not necessarily their deafness, per se. For example, some participants reported difficulties with weight management, particularly in regard to managing diet and nutrition. As one participant stated, “You know, it’s hard to lose weight. I just don’t have the energy and don’t make it [healthy food]”. Another reported issues with exercising associated with physical limitations due to cancer, “I had cancer. So, I had a blood clot in my leg. But my right leg I can’t bring it up all the way. So, I do a lot of exercises but it’s more effort for me…”. One participant reported challenges in managing their health related to their deafness. As stated, “when I was younger, I could do a lot of things at the same time, but now I can only do one thing at a time. And it really is related to balance [an issue due to Waardenburg syndrome, the condition that caused their deafness].” Overall, the health challenges reported for this subsample were predominantly due to general age-related changes.
The preliminary analyses of the strategies participants reported revealed that they used multiple strategies that allowed them to manage their health quite efficiently. For barriers or limitations that were specifically related to their deafness, participants reported response strategies that included reliance on resources, services, and assistance from others. For example, one participant reported that the presence of their service dog lets police and emergency medical services know that they are deaf, “…The dog also lets them know, so they were able to take me to the hospital so it was great, fast service”; another participant reported using a Video Relay Service (VRS) to call 911. VRS is a service provided by the US government that enables Deaf and hard of hearing individuals to communicate in real time with voice telephone users through an on-line sign language interpreter. Participants reported using VRS to place orders with a pharmacy, “If I call, we’ll use the video phone to make orders for medication”. Other technologies, like cell phone texting, supported participants’ accessing of healthcare information, “The drug store will call us or text us, let us know that the medicines are ready”.
When engaging with healthcare professionals in-person, participants reported that they used hospital or clinic provided on-site sign language interpreters or video remote interpreters (VRI), through which interpreting services are delivered by an off-site interpreter on a laptop/small computer screen. Additionally, participants described getting assistance from friends to help them with accessing healthcare information, “I ask my friends to see if they know what the huge words provided by the doctor mean”.
The preliminary results provide insights into the nature of challenges and the multitude of response strategies related to managing health that are used by individuals who are aging with deafness. Overall, the findings suggest that older signing Deaf adults do not experience extensive health challenges related to deafness. Moreover, it appears that they have multiple strategies for responding to any limitations that may stem from their deafness while managing their health and navigating the healthcare system. This inherent strategy use might be why they did not subjectively perceive significant challenges connected to their hearing disability. These older Deaf adults who use ASL to communicate strongly rely on technological and non-technological services to aid in managing their health and communicate with non-ASL users.
These findings are important as we consider interventions for this population that promote functional independence for adults aging with deafness. That they are quite able to utilize communication technologies and non-technology-based support services suggests notable resilience and that new innovators in this space should do careful user needs assessments to connect with or enhance upon existing resources that are already in effective use within this community. For example, Kushalnagar et al. (2014) asked 32 Deaf ASL users to evaluate the design, content, and usability of four existing health information websites that incorporate ASL videos. The participants had many suggestions and the authors discussed the importance of including these perspectives in future technologies that promote health literacy designed for this population. The results reported herein are preliminary and from a small subset of our sample. Further data analyses are ongoing and will provide valuable insights for the needs of Deaf older adults.