The survey results, published in the December issue of the American Journal of Public Health, are remarkable because they represent the first time a deaf community has used its own data to assess its health status. Traditionally, deaf people who use American Sign Language (ASL) are excluded from health research and thus medically underserved, the study noted.
But in this case, researchers collaborated with members of the Rochester, N.Y., deaf community – this is known as the community-participatory approach — and designed a linguistically and culturally appropriate ASL surveillance tool.
“It is now possible, through surveys such as the one described here, to include deaf ASL users in public health surveillance programs,” said Thomas A. Pearson, M.D., Ph.D., M.P.H., and director of the National Center for Deaf Health Research (NCDHR) at the University of Rochester Medical Center. “This is a monumental step toward eliminating health disparities and advancing the health of deaf people.”
To create the NCDHR Deaf Health Survey, deaf and hearing researchers and community collaborators worked to prioritize survey topics and develop ways to measure important demographic information, such as age at onset of deafness. Then, they adapted existing English-language health surveys and presented the questions (via video) in sign language on a computer kiosk. The health survey of 339 deaf adults took place over six months in 2008. More than 88% reported being deaf since before age 4 years old.
Results from the deaf respondents were compared with 2006 data from a random telephone survey conducted in the general adult population of the Rochester metropolitan area. The research identified some deaf community strengths, such as low smoking rates (9 percent of the deaf respondents reported being current smokers, compared with 18 percent in the general population). If researchers can further understand why fewer deaf people smoke, perhaps this information can be used to design interventions with other groups.
The research also identified some health inequities. Research findings were shared with the deaf community in a series of town hall meetings. Later, the deaf community used these findings to identify three inequities as community health priorities:
- Obesity: Deaf adults were more likely to be obese (34 percent, versus 26 percent in the general population). Prior research has shown that the general adult population tends to underreport their weight on phone surveys. It may be that the deaf survey respondents did not underreport their weight, the study said. Even so, the high rate of obesity warrants a culturally appropriate intervention.
- Suicide risk: Deaf respondents were more than 5 times more likely to report attempting suicide in the past year (2.2 percent, compared with 0.4 percent in the general population).
- Violence: Rates of partner violence and forcible sex were higher among the deaf survey participants. For example, 21 percent of the deaf respondents younger than age 65 said they had been physically abused in their lifetime, versus 14 percent that age in the general population. Nearly 21 percent of deaf respondents reported being forced to have sex in their lifetime, compared with about 6 percent in the general population. The authors noted that prior studies report that deaf children are at high risk for sexual abuse.
The researchers noted that the high education level of the deaf survey respondents in Rochester may mean that the survey findings actually underestimate the magnitude of the health disparities experienced by other communities of deaf ASL users.
Consistent with community participatory research, NCDHR will produce a video that summarizes, in ASL, the findings published in the AJPH journal article. AJPH will post this video on their website along with the English language journal article. This marks the second time that an academic health journal has published an ASL translation of an English language article.
Also consistent with community participatory research, the University of Rochester worked with community partners to successfully apply for research grant funding to address the three health priorities. In one grant, from the National Institutes of Health (NIH), Steven Barnett, M.D., and the NCDHR team will examine the association of suicide risk with social networks amongst deaf adult ASL-users. Another grant, from the Centers of Disease Control and Prevention (CDC), Robert Pollard, Ph.D., and colleagues from the Deaf Wellness Center will study factors related to perpetration of partner violence that affects the deaf community.
The successfully renewed CDC funding for NCDHR will adapt a healthy weight intervention so that it is accessible and culturally appropriate for use with deaf adult ASL-users. The grant also funds a randomized clinical trial to evaluate the adapted intervention, called Deaf Weight Wise. The clinical trial is scheduled to begin January 2012. To learn more, see www.urmc.edu/ncdhr.
Patrick Graybill, chair of the NCDHR Deaf Health Community Committee, said: “The collaboration of the Deaf community in Monroe County and the University of Rochester undoubtedly causes Deaf people to finally sense ownership and proper justice in the area of public health.”
In addition to Pearson, Barnett, and Pollard, co-authors include: Jonathan D. Klein, M.D., M.P.H.; Vincent Samar, Ph.D.; Deirdre Schlehofer, Ed.D.; Matthew Starr, M.P.H.; Erika Sutter, M.P.H.; and Hongmei Yang, Ph.D.
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