A Community-Participatory Approach to Adapting Survey Items for Deaf Individuals and American Sign Language

Abstract

Deaf individuals are underrepresented in survey research. Participation is impeded by telephone access, literacy, language, and sociocultural factors in the Deaf community. Knowledge regarding deaf population health disparities is limited by participation barriers in health surveillance surveys. A linguistically and culturally accessible survey of health and health risks was recently developed for deaf individuals who use American Sign Language (ASL), through adherence to the principles and practices of community-based participatory research (CBPR). During that effort, Deaf community representatives and hearing researchers formed a Translation Work Group (TWG) that adapted English health survey source material into ASL. Film clips of the translated items and answer choices were incorporated into a touch screen computer interface. The organization, philosophies, and procedures of the TWG are detailed, as are translation challenges the authors faced and lessons learned. The experiences of the TWG may inform other researchers engaged in cross-cultural, cross-linguistic translation work.