Codevelopment of an illustration representative of people living with spina bifida for health educational materials.

BACKGROUND: The lack of health education resources specific to people with disabilities contributes to disparities in outcomes. Developing user-centered materials with representative images tailored to people with disabilities could help improve knowledge and outcomes. OBJECTIVE: As a first step in developing an online sexual health resource for adolescents with physical disabilities, we sought end-user feedback to create illustrated characters for use in educational materials. METHODS: Two styles of characters were developed by the research team, which included a professional disability artist. Verbal and online survey feedback was obtained at the Spina Bifida Association's Clinical Care Conference. A new image was created incorporating initial feedback. The new image and favored image from the first round were then tested through an online survey advertised on the Spina Bifida Association's Instagram story feed. Open-ended comments were organized by categories and overlapping themes. RESULTS: Feedback was obtained from 139 audience members and 25 survey respondents from the conference and 156 Instagram survey respondents. Themes included depiction of disability, nondisability diversity, other physical appearance, emotional response, and design style. Most frequently, participants suggested the inclusion of characters with a range of accurately depicted mobility aids and of characters without mobility aids. Participants also wanted a larger, more diverse group of happy, strong people of all ages. CONCLUSIONS: This work culminated in the codevelopment of an illustration that represents how people impacted by spina bifida view themselves and their community. We anticipate that using these images in educational materials will improve their acceptance and effectiveness.

Duke Scholars

Author John Samuel Wiener Urology