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ABSTRACT INFORMATION
Presenter Information:	Presenter 1: Name: Deirdre Schlehofer Affiliation: I am Research Coordinator in the Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR), a CDC-funded prevention research center. NCDHR's mission is health promotion and disease prevention with Deaf ASL-users and their families through community-based participatory research. As Research Coordinator I have detailed knowledge of all aspects of the research described in this presentation. I am fluent in American Sign Language (ASL). Prior to joining NCDHR I was faculty in the University of Rochester American Sign Language Program. My doctoral research is focused on literacy and deaf children. My perspective on community-based participatory health research with the Deaf community is shaped by the fact that I am part of the research team and a member of the Deaf Community. Presenter 2: Name: Steve Barnett Affiliation: I am a family physician researcher; my career has focused on healthcare and health research with deaf people who communicate with American Sign Language (ASL) and their families. I am currently Associate Director of the Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR), a CDC-funded prevention research center. NCDHR's mission is health promotion and disease prevention with Deaf ASL-users and their families through community-based participatory research. My research publications focus on health and healthcare with deaf people.
Author Information:	Author 1: Name: Deirdre Schlehofer Affiliation: PRC/NCDHR Author 2: Name: Steve Barnett Affiliation: PRC/NCDHR Author 3: Name: Erika Sutter Affiliation: University of Rochester, Adolescent Medicine Division Author 4: Name: NCDHR Research Team Affiliation: National Center for Deaf Health Research
Abstract Information:	Title: Surveying adults deaf since childhood: Identifying and addressing disparities through community-based participatory research Primary Track: 5-Follow-up, Tracking, and Data Management Keyword(s): deaf health survey, collaboration, Abstract: Objective: To analyze the iterative process of implementing an accessible health survey. Background: People deaf from birth or early childhood are rarely included in health-related research that does not focus on the ear or hearing. Telephone health surveillance is inaccessible to deaf people. A goal of the Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) is to identify and address health disparities through community-based participatory research. Findings from this project provide a rich context to learn more about implementing health assessments with deaf people. Methods: NCDHR researchers and community members adapted the CDC Behavioral Risk Factor Surveillance System (BRFSS) for use with deaf people. To create an accessible survey, we (a) translated the English items into sign language, (b) adapted the English for captions, (c) added deaf specific items, (d) worked with community partners to prioritize topics, (e) designed the computer-based survey interface, (f) developed a survey dictionary, (g) conducted in-depth individual cognitive interviews to evaluate the survey, (h) developed recruitment strategies for survey field-testing, and (i) administered the survey to two samples, and (j) worked with community members from diverse backgrounds and perspectives to analyze data and interpret results. Results: Results of this collaborative process include: (a) successful collaboration amongst researchers, community members, clinicians and public health professionals, (b) the first comprehensive health survey that is sign language based and self-administered on a touch-screen kiosk-computer, and (c) a prioritized list of health issues for intervention. Data collected throughout the process reveal the limitations of written surveys and enthusiasm for an accessible survey. This presentation will focus on the process of adapting a survey for adults deaf since birth/childhood. Conclusions: Learning about the process of measuring health with deaf adults will help all interested parties to collaborate in ways that maximize the future health of deaf children. Presentation(s): Not Available Handouts: Not Available