Adapting the BRFSS to survey deaf sign language users

Background: Telephone surveys, including the Behavioral Risk Factor Surveillance System (BRFSS), are inaccessible to deaf people. Many adults deaf since childhood use American Sign Language (ASL), which is different from English and has no written form. For complex reasons, many deaf adults have low literacy. The mission of the CDC-funded Rochester Prevention Research Center: National Center for Deaf Health Research is health promotion and disease prevention with deaf people and their families through community-based participatory research.

Objective: To adapt the BRFSS for use with deaf adult ASL-users.

Method: To create an accessible survey, we (a) translated the English BRFSS items into sign language (and back-translated), (b) adapted the English for captions, paying attention to ASL syntax, (c) added deaf-specific items, (d) worked with community partners to prioritize topics, (e) designed the computer-based survey interface, (f) developed a dictionary to address fund-of-information deficits, (g) conducted in-depth individual cognitive interviews to evaluate the survey, and (h) developed recruitment strategies for further field-testing.

Results: Preliminary results reveal limitations of written surveys, confirm community enthusiasm for an ASL survey, and suggest health disparities compared with the general population.

Conclusion: Our computer-based BRFSS enhances access to a difficult-to-reach vulnerable population. We continue field testing and will report additional findings in October.