Facilitating Communication With Children and Young Adults With Special Health Care Needs Through a Web-Based...

Children and young adults with special health care needs comprise a significant portion of the pediatric population in the United States, where 1 in every 5 children has a complex health care 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.

This project aims to identify barriers to communication in children and young adults with special health care needs in the health care setting. These barriers will inform prototype development using human-centered design approaches to create a web-based application. Feedback from patients, caregivers, and health care providers (HCPs) was obtained on the usability and usefulness of the tool within the health care setting.

A needs assessment was conducted in which participants shared their experiences in providing or receiving health care services via a semistructured interview that was recorded and transcribed. Transcripts were analyzed inductively for themes, coded, and used to categorize the data. On the basis of these themes, iterative development of a web-based application for social stories took place. Focus groups were held to provide relevant feedback on the prototype.

There were 15 participants (n=10, 67% HCPs and n=5, 33% patients and caregivers) interviewed for the needs assessment that informed prototype development. A web-based application for social stories depicting different aspects of health care interactions was created. Focus group feedback from 19 participants (n=12, 63% HCPs and n=7, 37% patients and caregivers) on usability through the System Usability Scale, along with narrative feedback, was obtained. Overall, the usability of the application was supported by caregivers and HCPs.

Children and young adults with special health care needs require medical services that their peers generally do not, thereby compounding potential barriers in communication surrounding health care delivery. Using social stories geared toward health care interactions may help reduce anxiety and difficulty.