Leveraging Feedback From Families of Children With Autism to Create Digital Support for Service Navigation: Descriptive Study.

Abstract

It is difficult for families to navigate and access services for their children with autism. Barriers to service access are compounded among families from low-resourced backgrounds. The purpose of our study was to explore the development of an app to facilitate access to services among families of children with autism from low-resourced backgrounds. Our specific aims were to explore feedback from an advisory board about the app and to explore feedback from navigators about the app. Via a multistage codevelopment process, we elicited feedback from 5 key parties: the research team, a community organization, the app development team, the advisory board, and family navigators. Collectively, 36 individuals provided feedback about the development of the app via individual interviews, focus groups, observations, and surveys. The key features of the app included a dashboard showing the service needs of the family and related resources, a messaging feature between the family, the navigator, and the supervisor, and a fidelity checklist and evaluation feature. The advisory board provided feedback about the app to increase its user-friendliness, include the ability to develop an action plan, improve the identification of needed services, and add information about service providers. Navigators suggested that the app should connect navigators to one another, have a clearer purpose for the notes section, and reflect an easier log-in process. Navigators also wanted training to role-play using the app. After participating in a role play using the app, navigators reported significantly more satisfaction with the app and greater usefulness (P<.001). Our work sheds light on the importance of eliciting feedback from end users, especially users who are often overlooked by the research community and app developers. Further, it is important to elicit feedback in multiple ways to improve the app.