Parental needs and experiences with e-Health applications in chronic pediatric care - a scoping review

The number of children and adolescents living with a chronic condition is steadily increasing. These conditions often place a considerable burden on affected individuals and their families. E-Health applications have the potential to support families by providing accessible resources and personalized tools for disease management. This scoping review aims to synthesize the specific needs and experiences that parents of children with chronic conditions across different diagnosis categories express in relation to e-Health applications.

This review was conducted in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews and the PRISMA-ScR reporting guidelines. A systematic search of the literature published between January 2010 and February 2025 was carried out in the Web of Science and Ovid databases, including Ovid MEDLINE and APA PsycInfo. The initial search identified 1,173 articles, of which 39 underwent data analysis via narrative synthesis.

A broad spectrum of needs and experiences was identified regarding e-Health applications intended to support parents of children with chronic conditions. Across conditions, such as autism, diabetes, asthma, congenital heart disease, and obesity, recurring themes emerged. Parents consistently emphasized the need for accessible and user-friendly interfaces, reliable and comprehensible health information, and tools to support care coordination and communication with healthcare professionals. Social support and psychological resources provided via e-Health applications were also valued, while concerns regarding data privacy persisted. Experiences with e-Health applications were generally positive, particularly for mobile apps, web-based platforms, and video conferencing, which improved monitoring, empowerment, and access to care. However, parents also reported barriers, including technical difficulties, limited customization, and fear of reduced personal contact with providers. Needs and experiences were frequently repeated across different modalities and conditions, suggesting common priorities for digital health design. Evidence on needs along the care trajectory was limited, with early and long-term phases better represented than transitional periods.

Parents of children with chronic conditions articulate broad, cross-cutting needs for e-Health applications that go beyond diagnosis-specific management. From their perspective, effective tools should integrate accessible design, reliable information, coordination features, social support, and ensure data protection. Research gaps remain regarding transitional care phases and the dynamic evolution of needs over time.