The University of Rochester Medical Center and its partners in the deaf community are setting out to tackle a common problem – obesity – by using a unique approach.
Researchers will launch the nation’s first randomized, clinical study of ways to reduce obesity in the underserved deaf population. They plan to adapt an existing weight-loss intervention program by translating English language to American Sign Language (ASL), and training members of the Rochester deaf community to act as weight-loss coaches.
What is most unusual, however, is that the decision to focus on obesity came directly from the deaf community. “This is a terrific example of a new model being used in public health, referred to as community-based participatory research, where scientists enlist the help of the community they are attempting to serve, rather than dictating how best to solve the problem from the beginning,” said Thomas A. Pearson, M.D., Ph.D., director of the Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) at the University of Rochester.
“All of this is brand new and very exciting,” Pearson said. “One of our key strengths at NCDHR is our steadfast partnership with the deaf community for coming up with ways to improve health in the years ahead.”
Audrey Schell, who is deaf, said she is a perfect example of someone who might benefit from a tailored weight-loss program. At 57, Schell said she has always been overweight, but unlike her counterparts in the hearing world, she has not received the same messages through her life about eating healthy and exercising. And her access to weight loss programs is more limited.
“It hits deaf people only when it begins to impact your health – and in my case it was borderline diabetes,” Schell said, through a sign language interpreter. “Before that, I never heard anything about it. It takes a moment of impact for weight loss to be a priority.”
In the past year, Schell has dropped 20 pounds by educating herself and making smarter food choices. She tries hard to cut down on bread, pasta and cookies, and eats more frequent, healthier, smaller meals instead of two or three large meals a day. She also stays active and enjoys bike-riding and snow-shoeing. As a member of the NCDHR Deaf Health Community Committee, Schell looks forward to contributing what she’s learned about weight loss.
“We are thrilled about the prospect of collaborating with the NCDHR on this project,” added Jessica Cuculick, chair of the NCDHR Deaf Health Community Committee. “We have seen tremendous progress in cross-cultural understanding between ASL users, as members of a linguistic minority, and the University of Rochester Medical Center deaf health research group.”
The collaboration started in 2004 when the Centers for Disease Control and Prevention (CDC) awarded the URMC a $3.5 million landmark grant to study health behaviors among deaf people. The University and its partners in the deaf community established the NCDHR and began planning for a comprehensive effort to collect data.
This led to a deaf-friendly health survey, conducted between February and September of 2008, with more than 300 deaf adult participants from the Rochester area. The design of the computer-based health survey took an original approach as well: rather than relying on conventional English-based questionnaires, it used videos shown in ASL or English-based signing with captions to communicate messages to the person being surveyed.
As a follow-up to the surveys, the NCHDR held town-hall style meetings with members of the deaf community to seek additional input on health priorities. Data are still being analyzed, but obesity immediately bubbled up as a top concern. For the first time, a deaf community determined community health priorities based on research data collected from deaf people.
The latest project, called Deaf Weight Wise, is an intervention that will test whether deaf people could benefit in the same way as hearing persons. Researchers will also look at whether the program would be more effective if delivered to groups rather than to individuals, given that the deaf community is very interactive and social, Pearson said.
Funding for Deaf Weight Wise and other future initiatives also comes from the CDC, which in September 2009 awarded an additional $4.9 million for the next five years.
The Rochester area is rich in resources and partners, due in part to the presence of the National Technical Institute for the Deaf (NTID), a college of Rochester Institute of Technology (RIT); Rochester School for the Deaf (RSD); and a network of organizations and experts who serve as leaders in the deaf community and in public health.
The NCDHR is one of 35 centers in the country focusing on illness prevention among underserved and understudied groups. The next phase of research also involves establishing a hard-of-hearing health task force.