Better language access needed to improve diabetes care and education for deaf population
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BALTIMORE — Diabetes care and education specialists must provide more resources and services in American Sign Language to optimize education for deaf and hard of hearing people with diabetes, according to two speakers.
In a presentation at the Association of Diabetes Care & Education Specialists Annual Conference, Murdock Henderson, PsyD, MS, MA, a clinical psychologist and research associate at the University of Utah College of Nursing, and Michelle L. Litchman, PhD, FNP-BC, FAANP, FADCES, FAAN, nurse practitioner and assistant professor at the University of Utah College of Nursing, discussed findings from a 10-person community advisory board of deaf and hard of hearing people with diabetes. The board listed several barriers, most of which revolved around a lack of access to diabetes care resources in American Sign Language (ASL).
“Using a community-engaged approach, we identified several structural barriers that must be addressed in order to optimize diabetes self-management education and support,” Litchman told Healio. “Two main barriers include the need for an American Sign Language glossary to update, clarify and create diabetes terms, and establishing diabetes-specific training for American Sign Language interpreters to enhance communication during medical appointments.”
Information disparity for deaf people with diabetes
In the U.S., the rate of diabetes among deaf and hard of hearing people is 2.5 times higher than in the general population. Henderson said the difference in diabetes rates may be due to a health information disparity attributable to several factors. One is the “dinner table syndrome,” where a deaf and hard of hearing person is unable to communicate with family members because they are not using sign language. Henderson noted people experiencing dinner table syndrome have increased rates of chronic disease compared with the general population.
“The deaf members of the family are typically left out of conversation from birth,” Henderson said via ASL interpreter during the presentation. “There’s usually language complications and language deprivation issues that come with this.”
Another factor is a lack of sign language interpreters trained to work with deaf and hard of hearing people at medical visits. Only about 50% of medical appointments for deaf and hard of hearing people include a sign language interpreter and when an interpreter is present, only about one-third are trained to translate medical terminology.
“American Sign Language interpreters may not be effectively translating medical information during diabetes self-management and education specialist visits,” Litchman told Healio. “Some of this is because signs for diabetes terms can vary throughout the country, and there are some diabetes terms that do not yet have signs to support them. Some of this is because not all interpreters are certified. Another complicating issue is that many American Sign Language interpreters are not medically trained.”
Health care providers also make the mistake of assuming deaf and hard of hearing people can read written handouts in English. Finally, Henderson noted there are limited diabetes education resources available in ASL online. In a search of ASL diabetes education videos on YouTube, 20 were found, of which most were posted by ASL students as part of a class assignment.
Barriers, facilitators for deaf people with diabetes
To better understand the barriers deaf and hard of hearing people with diabetes face, researchers created a 10-person community advisory board with representatives from around the U.S. The board gathered for 10 meetings conducted in ASL with live captioning available. Each meeting concluded with a debriefing in which the research team discussed highlights that were grouped into themes.
“We’re basing our research on these community resources,” Henderson said. “We have several studies in the works. Currently what we’re doing right now is using the community advisory board as a grassroots space.”
Board members detailed three major barriers during the meetings: a lack of ASL translators trained to translate medical information; most diabetes education content for the general population could not be delivered to deaf and hard of hearing people; and concerns about the credibility of online information.
The board members listed several ways to help diabetes care and education specialists create a program tailored for deaf and hard of hearing people. The board said visual representations of foods, portion sizes and more could help confirm lessons during education sessions. Board members also expressed a desire to learn from other deaf or hard of hearing people with diabetes, or those who understand deaf culture.
“Many cultural groups want to learn from someone from that group,” Litchman said during the presentation. “What this means for us is we need to find deaf community health workers who also live with diabetes. We may need to find deaf health care providers.”
The board members requested for diabetes education to take place over multiple sessions, with a new concept explored each week, instead of having multiple topics covered in one long session. The members also asked for supportive care partners and ASL interpreters with training specifically in diabetes terminology to be involved in education. The final idea presented by the board members is a deaf-friendly website in ASL with diabetes resources.
“We have several structural barriers that we’ve identified exist and have to be addressed in order to optimize diabetes self-management education and support in deaf and hard of hearing populations who have diabetes,” Litchman said during the presentation. “If we’ve got diabetes self-manage education and support at the top, we need to support the foundation with an American Sign Language glossary, which is making sure that we have unifying signs for diabetes terms that everybody across the country, no matter where you are, understands. Then we need this diabetes training for American Sign Language interpreters. Once we have those in place, we can more effectively provide diabetes self-manage education and support to those populations.”
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Litchman ML, et al. D14C. Presented at: ADCES22; Aug. 12-15, 2022; Baltimore.
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