ArticleJMIR formative research2024
Leveraging Feedback From Families of Children With Autism to Create Digital Support for Service Navigation: Descriptive Study.
Article in JMIR formative research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Quality of Life Among Saudi Mothers of Children with Autism Spectrum Disorder: Associations with Caregiver Burden, Psychological Distress, Financial Experiences, and Post-Diagnosis Service Pathway Clarity.Healthcare (Basel, Switzerland) · 2026Article
- Characterizing service receipt among families of young autistic children from low-resourced communities.International journal of developmental disabilities · 2026Article
- Care pathways, service access, and psychosociaasl support needs in children and adolescents with autism spectrum disorder: a narrative review.Frontiers in public health · 2026Review
- Article
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIt 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.
objectiveThe 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.
methodsVia 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.
resultsThe 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).
conclusionsOur 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.
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