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Mobile health applications for parents of children with Hirschsprung disease: a requirement analysis
Fatemeh Sharafi1, Ali Tadayon Chahar Soughi2, Azita Yazdani3,4
1Shiraz University of Medical Sciences, Shiraz, Iran.
Insights
This study identified essential features for a mobile health app for parents of children with Hirschsprung disease (HD). The app should offer educational content, care tracking, and communication tools to support families managing this congenital gastrointestinal disorder.
Area of Science:
- Pediatric Gastroenterology
- Digital Health Interventions
- Congenital Gastrointestinal Disorders
Background:
- Hirschsprung disease (HD) presents significant educational and self-management challenges for parents due to complex postoperative care and long-term complication monitoring.
- Mobile health (mHealth) applications show promise in supporting education, self-management, and communication for pediatric chronic conditions.
Purpose of the Study:
- To identify the specific informational and functional requirements for a mHealth application designed for parents of children with Hirschsprung disease.
- To integrate the perspectives of healthcare specialists and parents to create a user-centered application framework.
Main Methods:
- A mixed-methods approach was employed, involving a Delphi questionnaire distributed to 13 pediatric specialists and semi-structured interviews with 6 parents of children with HD.
- Data analysis included statistical evaluation of specialist responses and conventional content analysis of parent interviews.
Main Results:
- A Delphi survey yielded 67 approved items across demographic data, clinical data, educational content, and functional capabilities, excluding insurance and guardian access.
- Qualitative analysis revealed parental needs centered on comprehensive educational content, care-tracking reminders, remote communication, and a user-friendly interface.
Conclusions:
- Integrating specialist and parental input provides a robust framework for developing mHealth applications for Hirschsprung disease parents.
- This framework can guide the creation of similar digital tools for other pediatric gastrointestinal conditions, enhancing supportive care.
Abstract:
Hirschsprung disease (HD) is a congenital gastrointestinal disorder that occurs due to the absence of nerve cells in segments of the large intestine, resulting in impaired propulsive bowel movements. Postoperative complications and the need for continuous care place parents of affected children under significant educational challenges. Mobile health (mHealth) applications can serve as effective tools to enhance parental education and self-management. The aim of this study was to identify the requirements and functional needs of a mHealth application specifically designed for parents of children with HD. This research was conducted as a mixed-methods study in two phases. First, a targeted literature review was performed, and a list of informational needs and functional capabilities of the application was extracted. These items were then compiled into a Delphi questionnaire and distributed to 13 pediatric gastroenterologists and pediatric surgeons. Responses were analyzed based on the mean score of each item, and items with low mean scores were excluded. In the qualitative phase, semi-structured interviews were conducted with six parents of children with HD to collect their perspectives on educational needs and desired application features. Qualitative data were analyzed using the conventional content analysis method. In the Delphi phase, 67 items across four main categories-demographic data, disease-related clinical data, educational content, and application functional capabilities-were approved, while two items ("insurance coverage" and "guardian access to medical record information") were excluded. Analysis of qualitative findings led to the extraction of four themes, nine categories, and 20 subcategories. Parents identified their most important needs as comprehensive and understandable educational content, reminder and care-tracking tools, remote communication and consultation capabilities, and a simple, user-friendly design.
Conclusion:
Integrating the perspectives of specialists and parents resulted in the development of a comprehensive set of requirements for designing a mHealth application tailored to parents of children with HD. This framework can serve as a model for developing similar educational applications for other pediatric gastrointestinal diseases and provides a foundation for future supportive digital intervention design.
What Is Known:
• Parents of children with Hirschsprung disease often face ongoing challenges in understanding postoperative care, recognizing warning signs, and managing long-term complications. • Mobile health applications have been increasingly used to support education, self-management, and communication in chronic pediatric conditions.
What Is New:
• This study identifi es the specifi c informational and functional requirements of a mobile health application tailored for parents of children with Hirschsprung disease through a mixed-methods needs assessment. • By integrating the perspectives of both specialists and parents, the study provides a practical framework to guide the development of a user-centered application in this field.
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