Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Jun 3, 2025
Open Peer Review Period: Jun 6, 2025 - Jul 2, 2025
Date Accepted: Nov 27, 2025
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Facilitating Communication with Children and Young Adult Patients with Special Healthcare Needs through a Web-based Application: A Qualitative Descriptive Study
ABSTRACT
Background:
Children and young adults with special healthcare needs comprise a significant portion of the pediatric population in the United States, where 1 in every 5 children has a complex healthcare need. These patients are more likely to receive “unsafe” care and have their needs unmet in part due to lack of accessible information and limited training support. Barriers in communication may contribute to detrimental outcomes for this vulnerable high-risk population.
Objective:
The project aims to identify barriers to communication in children and young adults with special health care needs in the healthcare setting. These barriers will inform prototype development using human centered design approaches to generate a web-based application. Feedback from patients (P), caregivers (CG) and healthcare providers (HCP) was obtained for usability and usefulness of the tool within the healthcare setting.
Methods:
A needs assessment was conducted, where participants shared their experiences in providing or receiving healthcare services via a semi-structured interview that was recorded and transcribed. Transcripts were analyzed inductively for themes, coded and used to categorize the data. Based on these themes, iterative development of a web-based application for social stories occurred. Focus groups were held to provide relevant feedback on the prototype.
Results:
There were 15 participants (10 HCP and 5 P/CG) interviewed for the needs assessment that informed prototype development. A web-based application for social stories depicting different aspects of healthcare interactions was created. Focus group feedback on usability utilizing the Sustained Usability Score (SUS) along with narrative feedback was obtained. Overall, the usability of the application was supported by caregivers and healthcare providers
Conclusions:
Children and young adults with special health care needs necessitate medical services not generally required by their peers, thereby compounding potential barriers in communication surrounding healthcare delivery. Utilizing social stories geared to healthcare interactions may help reduce anxiety and difficulty in successful healthcare interactions.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.