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Children and young people's views on access to a web-based application to support personal management of long-term
Insights
Children and young people need clear, age-appropriate information and Wi-Fi access for a chronic kidney disease (CKD) web app. Personalization is key to feeling normal while managing CKD at home.
Area of Science:
- Pediatric Nephrology
- Digital Health
- Patient Support Systems
Background:
- Developing effective digital resources for pediatric chronic kidney disease (CKD) management requires understanding user needs.
- Home-based care for children with CKD necessitates accessible and user-friendly support tools.
Purpose of the Study:
- To explore children and young people's perspectives on a proposed web-based application for managing chronic kidney disease (CKD).
- To inform the design of a user-centered digital tool that meets the preferences of pediatric CKD patients.
Main Methods:
- Qualitative interviews were conducted with 26 children and young people (aged 5-17 years) with CKD.
- Framework technique and self-efficacy theory were used for data analysis.
Main Results:
- Key themes identified were 'Access,' encompassing information clarity, age-appropriateness, security, and Wi-Fi necessity.
- Participants emphasized the need for information to be clear, accurate, and secure.
- The desire to feel 'normal' influenced preferences for accessing health information, particularly outside of hospital settings.
Conclusions:
- A web-based application designed with children's and young people's needs will enhance utility and effectiveness in home-based CKD care.
- Tailoring digital resources to user preferences can improve patient outcomes and support effective caregiving.
Background:
An exploration of children and young people's views on a proposed web-based application to support personal management of chronic kidney disease at home is important for developing resources that meet their needs and preferences.
Methods:
As part of a wider study to develop and evaluate a web-based information and support application for parents managing their child's chronic kidney disease, qualitative interviews were conducted with 26 children and young people aged 5-17 years. Interviews explored their views on content of a proposed child and young person-appropriate application to support personal management of their condition. Data were analysed by using framework technique and self-efficacy theory.
Results:
One overarching theme of Access and three subthemes (information, accessibility and normalization) were identified. Information needed to be clear and accurate, age appropriate and secure. Access to Wi-Fi was essential to utilize information and retain contact with peers. For some, it was important to feel 'normal' and so they would choose not to access any care information when outside of the hospital as this reduced their ability to feel normal.
Conclusion:
Developing a web-based application that meets children and young peoples' information and support needs will maximize its utility and enhance the effectiveness of home-based clinical caregiving, therefore contributing to improved outcomes for patients.
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