Deaf Health Survey: Community engagement to include Deaf American Sign Language users in public health surveillance

Background: The Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) worked with the Deaf community to develop linguistically and culturally appropriate data collection methods to conduct community-based public health surveillance. Telephone surveillance often excludes deaf people. 

Methods: The NCDHR Deaf Health Survey (DHS), based on the Behavioral Risk Factor Surveillance System (BRFSS), presents survey items in American Sign Language (ASL) on touch-screen computers through custom software developed for use with Deaf people. Deaf and hearing researchers and community members worked together to design the survey software, select topics, translate items, recruit participants, analyze and interpret findings, and disseminate results to stakeholders. NCDHR hosts community meetings with stakeholders to discuss DHS findings and work together to 1) identify Deaf community strengths, 2) identify health disparities compared with local BRFSS telephone survey findings, and 3) establish Deaf community health priorities.

Results: Rochester NY Deaf adults (n=211) took the DHS 2013. Survey topics include healthcare access, preventive services use, substance use, sexual behavior, cardiovascular disease risk, chronic conditions, and adverse childhood experiences (ACE). Survey respondents were 57% female, 82% White, with an average age of 44.7 years. About 53% of respondents had a 4-year college degree or higher, yet nearly two-thirds of the sample reported an annual household income of less than $35,000.  Over 90% of the sample became deaf before age 3.  

Conclusion: Community engaged inclusive public health surveillance is necessary for collaborative community driven public health priority setting. Public health surveillance programs can successfully include deaf people.