Co-Development of an Illustration Representative of People Living with Spina Bifida for Health Education Materials

Elsevier

Available online 11 April 2023, 101475

Disability and Health JournalAuthor links open overlay panel, , , , , , AbstractBackground

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, non-disability diversity, other physical appearance, emotional response, and design style. Most frequently, participants suggested 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 co-development of an illustration that represents how people impacted by spina bifida view themselves and their community. We anticipate that using these images in education materials will improve their acceptance and effectiveness.

Section snippetsFunding:

This research was funded by a Faculty Catalyst Award through the Department of Urology at the University of Michigan.

Methods

This study was deemed exempt by the Institutional Review Board (HUM00218858).

Round 1

Voting by raising hands at the Spina Bifida Association’s Clinical Care Conference, the vast majority of attendees at the Spina Bifida Association’s Clinical Care Conference preferred Option 1 (Figure 1). Twenty-five people completed the online survey, of whom most (20, 80%) were older than 30 and were health care providers (16, 64%) or parents of a child with spina bifida (5, 20%) (Table 1). Of these respondents, 14 (56%) preferred Option 1 and 11 (44%) preferred Option 2. Despite preferring

Discussion

This work has culminated in the co-production of a user-centered illustration of a group of adolescents with physical disabilities to be used in medical education materials. Results of this study demonstrate the importance of seeking stakeholder feedback when developing an illustration representative of a specific population. Although the initial image was created with input from two physicians who regularly care for people with spina bifida and an artist with a physical disability,

Conclusion

This work demonstrates the importance of representation in illustrations and images for patient educational materials to this group of marginalized adolescents. Stakeholder feedback during the development of the illustrations allowed for the identification and inclusion of features future users prioritized. Specifically, we identified the importance of accurately depicting assistive devices, including characters with invisible disabilities, ensuring a diversity of people based on race and other

Disclosure:

Jennifer Latham Robinson is an author, illustrator, musician, and disability advocate. She created and runs the nonprofit Limb Horizons (https://www.limbhorizons.com/), creating children’s stories to promote prosthetic and orthotic education and limb difference awareness.

Acknowledgements:

The authors would like to thank the Spina Bifida Association for their support and assistance with this study and ongoing work.

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