How healthy is the deaf and hard-of-hearing community when most of the information that leads to healthy lifestyles is presented in a language they may not fully understand?
To help address that issue, the Centers for Disease Control and Prevention established the National Center for Deaf Health Research (NCDHR) in 2004 at the University of Rochester to promote health within the deaf and hard-of-hearing community, under the leadership of director Thomas Pearson and associate director Steven Barnett.
The National Technical Institute for the Deaf's Center for Access Technology, directed by James DeCaro, is a community partner in the program and collaborates to develop surveys in signed and written languages used and understood by members of the community.
Subcontracts with NCDHR involve develop- ing sign language-based health surveys and research measures to support a variety of health-related research, surveillance, and intervention programs funded by the CDC and National Institutes of Health.
"Deaf people who use American Sign Language are medically underserved and are often excluded from public health surveillance and research," says Vincent Samar, an associate professor in NTID's department of liberal studies and co-principal investigator on the CDC subcontract.
Since 2004, deaf and hearing researchers and community members worked together to develop and administer linguistically and culturally appropriate health surveys. Surveys were developed in ASL, signed English, and English print so the community respondents had the option to communicate in the form they were most familiar with.
Samar's team collaborated with NCDHR to develop video tools used to present surveys to community members. Samar also collaborates on the planning and execution of NCDHR research projects.
NCDHR's surveys have identified several high-priority health risk factors, including obesity, intimate partner violence, and suicide attempts. NCDHR has obtained new CDC and NIH funding to respond to these and other priorities.
For example, to respond to the deaf community's obesity-prevention priority, a "Deaf Weight Wise" program was launched to help promote healthy eating and exercise and reduce the risks of being overweight.
"The Deaf Weight Wise program is an excellent example of community-based participatory research and follow-up community intervention," Samar says. Now, with help from additional funding from the CDC, NCDHR is busy conducting research to determine if this program has been effective.