Specialized weight loss program for deaf people helps participants lose weight

Shedding unwanted pounds can be hard for anyone, but may be especially difficult for Deaf sign language users who experience barriers to mainstream weight loss programs and the social support they offer. While those programs may feel isolating or out of reach, results from a University of Rochester Medical Center (URMC) clinical trial published in Obesity show that a specialized weight loss program designed for Deaf people by Deaf people helped participants lose weight.

Over six months, Deaf sign language users who participated in the program, called Deaf Weight Wise, lost an average of 12.5 pounds, and 62 percent of them lost at least five percent of their baseline weight, a level deemed "clinically meaningful." On the other hand, Deaf sign language users in the control group only lost an average of 5 pounds during the same period and only 18 percent experienced clinically meaningful weight loss.

Having a Deaf-to-Deaf approach, in which the information is culturally and linguistically available to participants, helped because it created a new community of awareness of health issues and taking steps to improve health."  

Lori DeWindt, MA, senior health project coordinator, study author

Lori DeWindt is Deaf and has been a part of Deaf Weight Wise from its inception.

URMC's Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) developed Deaf Weight Wise in partnership with the local Deaf community. Together, they adapted an existing evidence-based weight loss program for use with Deaf sign language users.

"Historically, public health research and programs are not accessible for the Deaf community," said Kelly Matthews, BSW, senior health project coordinator for the NCDHR and author of the study, who is Deaf. "NCDHR works together with communities to develop public health research, surveys, programs, and clinical trials that match the needs of Deaf communities."

NCDHR, which is part of the University of Rochester Clinical and Translational Science Institute, put the program to the test in a first-of-its-kind randomized clinical trial, which enrolled 104 adult Deaf sign language users living in the Rochester metropolitan area with a body mass index between 25 and 45. Of those 104 enrollees, 48 were randomly assigned to participate in Deaf Weight Wise right away, while 56 were assigned to participate in the program the following year, serving as a "delayed intervention" control group.

Deaf Weight Wise focused on lifestyle changes, like eating healthy and getting at least 150 minutes of exercise each week. The program aimed to help participants lose one-to-two pounds each week, which is widely accepted as a healthy and safe rate of weight loss.

The program kicked off with 16 weeks of weekly group meetings that were led by trained Deaf counselors and provided a space for social interaction and support as well as experiential learning.

"Deaf Weight Wise is very special and unique because we don't have any hearing people presenting. We have trained Deaf counselors who lead our sessions and work with the participants," said Earl Allen, BA, an NCDHR human subject research coordinator who is part of the Deaf Weight Wise team. "The information is not interpreted, but rather just straight Deaf-to-Deaf communication. Through that people are able to support each other and share experiences throughout the program."

During the initial 16-week phase, participants kept food and fitness diaries, tracking what they ate and how much they exercised. Participants earned "Wise Bucks" for completing their daily diary that could be cashed in for health-promoting items, like yoga mats, blenders, or lunch boxes.

Three and six months after the end of the initial program, participants had in-person check-ins with their Deaf Weight Wise counselor to weigh in, review diet and exercise habits, troubleshoot issues, set goals, and create action plans for long-term success. Counselors and participants also met regularly via email and videophone during this six-month follow-up phase to reinforce program lessons and provide support.

People seemed to love the program. It's normal to see a certain amount of dropout in clinical trials – and in mainstream weight loss programs, but DeWindt was surprised by the number of people who made it all the way through Deaf Weight Wise. She takes the program's high retention rate as a sign that their approach worked.

Allen, who is now a research coordinator for Deaf Weight Wise, is an example of a satisfied former participant. "Deaf Weight Wise has a very special meaning to me personally," he said. "In 2018, I was a participant in Deaf Weight Wise and I learned a lot. Now, five years later as a research coordinator, I'm able to bring that perspective of both being a participant and now a coordinator and how we can continue to evolve this program."

Now, the NCDHR team is working to expand Deaf Weight Wise, testing it in a broader age range and geographical area. Eventually, they hope the program will be widely available and covered by insurance, similar to the CDC's National Diabetes Prevention Program.