Adapting informed consent processes with deaf American sign language (ASL) users: Experiences from the deaf weight wise study

Deaf American Sign Language (ASL) users comprise cultural and linguistic minority groups that historically have not been included in public health research. Research processes including informed consent are often inaccessible to Deaf ASL users. The Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) adapted a randomized controlled trial of a healthy lifestyle intervention for use with overweight and obese Deaf adults. Deaf and hearing researchers and community partners used community-based participatory research methods to ensure that all phases of the Deaf Weight Wise study were ASL accessible and culturally appropriate, including enrollment and consent. Researchers and community members adapted a written English consent document into a dialogic, “novella”-style ASL video, a format used with health education materials because it is language accessible and culturally congruent. The ASL informed consent video depicts four deaf characters (two “researchers” and two “potential participants”) discussing all the required elements of informed consent. Potential DWW study participants viewed the 18-minute video, and then met with an ASL-fluent researcher to have their questions answered, confirm their understanding, and document their consent on a one-page written English form. This process was approved by the University's institutional review board and was well-received by study participants. The Deaf Weight Wise informed consent process represents a novel approach to including Deaf ASL users in research, and could be used with other populations and in situations such as healthcare consent. Community participation was essential, and ensured that enrollment and informed consent was culturally and linguistically appropriate.