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Facilitating Communication With Children and Young Adults With Special Health Care Needs Through a Web-Based
Jessica R Hanks1, Ashley M Hughes2, Safura Sultana3
1Department of Health Sciences Education and Pathology, College of Medicine Peoria, University of Illinois Chicago, Peoria, IL, United States.
Insights
A web-based social story application was developed to address communication barriers for children with special health care needs. This tool aims to reduce anxiety and improve health care experiences for this vulnerable population.
Area of Science:
- Pediatric Health
- Health Communication
- Human-Computer Interaction
Background:
- Children and young adults with special health care needs (CYSHCN) represent 20% of the pediatric population.
- CYSHCN often face unmet needs and unsafe care due to communication barriers and limited information.
- Effective communication is crucial for this high-risk group.
Purpose of the Study:
- Identify communication barriers experienced by CYSHCN in healthcare settings.
- Develop a web-based application using human-centered design to mitigate these barriers.
- Evaluate the usability and usefulness of the application with patients, caregivers, and healthcare providers (HCPs).
Main Methods:
- Conducted semistructured interviews for a needs assessment with 15 participants (HCPs, patients, caregivers).
- Analyzed interview transcripts to identify themes and inform the iterative development of a web-based social story application.
- Gathered feedback on the prototype through focus groups with 19 participants (HCPs, patients, caregivers) using the System Usability Scale and narrative input.
Main Results:
- A needs assessment identified key communication challenges for CYSHCN.
- Developed a web-based application featuring social stories for various healthcare interactions.
- Focus groups indicated positive usability feedback from both caregivers and HCPs, supporting the tool's potential.
Conclusions:
- CYSHCN have unique medical needs that can be exacerbated by communication difficulties.
- Social stories tailored to healthcare interactions show promise in reducing patient anxiety and challenges.
- The developed application offers a potential solution to improve healthcare experiences for CYSHCN.
Background:
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.
Objective:
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.
Methods:
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.
Results:
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.
Conclusions:
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.
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