Parental needs and experiences with e-Health applications in chronic pediatric care – a scoping review
1
Institute for Medical Sociology - Public Health Section, Heinrich-Heine-Universität Düsseldorf, Düsseldorf, Germany
Popul. Med. 2026;8(Supplement Supplement 1):A975
ABSTRACT
INTRODUCTION:
Chronic conditions affect 30% of children worldwide and place organizational and psychosocial burdens on families (1). Parents must coordinate multidisciplinary care while managing stress and uncertainty. E-health offer potential to support families through accessible information, monitoring, and communication(2,3). However, existing evidence is dominated by diagnosis-specific tools, and less is known about parents’ cross-diagnostic needs and lived experiences across the patient journey. This scoping review synthesizes parents’ perspective on e-Health applications supporting children aged 0–16 years with chronic conditions.
METHODS:
This scoping review was conducted according to PRISMA-ScR guidance, with the protocol preregistered on the Open Science Framework. Web of Science and Ovid (MEDLINE, APA PsycInfo) were searched for peer-reviewed studies published between January 2010 and February 2025 in English or German. Eligible studies examined parents’ needs and/or experiences with e-Health applications supporting childhood chronic conditions, including mental health (oncology excluded). Screening and data extraction were performed independently by two reviewers with adjudication by a third. Findings were synthesized thematically.
RESULTS:
Thirty-nine studies met inclusion criteria. Autism and diabetes were most frequently addressed (each n=10), followed by congenital heart disease, asthma, and obesity (each n=4). Six cross-cutting themes emerged: (1) accessibility/usability (mobile-first, personalization); (2) content/information (evidence-based, plain language, tailored to diagnosis); (3) coordination (central hubs for plans, reminders, tracking); (4) consultation with clinicians (secure two-way messaging/video); (5) psychosocial support (moderated peer communities, coping resources); and (6) data protection (transparency and control over sharing). Evidence on how needs shift across care stages was limited but suggested heightened value early after diagnosis and during long-term management.
CONCLUSIONS:
Parents value e-Health tools that reduce coordination burden and provide trustworthy, tailored support, but adoption depends on usability, personalization, and transparent data governance. Future research should examine needs longitudinally and inform hybrid designs combining cross-diagnosis coordination features with condition-specific modules to strengthen family-centered chronic care.
Chronic conditions affect 30% of children worldwide and place organizational and psychosocial burdens on families (1). Parents must coordinate multidisciplinary care while managing stress and uncertainty. E-health offer potential to support families through accessible information, monitoring, and communication(2,3). However, existing evidence is dominated by diagnosis-specific tools, and less is known about parents’ cross-diagnostic needs and lived experiences across the patient journey. This scoping review synthesizes parents’ perspective on e-Health applications supporting children aged 0–16 years with chronic conditions.
METHODS:
This scoping review was conducted according to PRISMA-ScR guidance, with the protocol preregistered on the Open Science Framework. Web of Science and Ovid (MEDLINE, APA PsycInfo) were searched for peer-reviewed studies published between January 2010 and February 2025 in English or German. Eligible studies examined parents’ needs and/or experiences with e-Health applications supporting childhood chronic conditions, including mental health (oncology excluded). Screening and data extraction were performed independently by two reviewers with adjudication by a third. Findings were synthesized thematically.
RESULTS:
Thirty-nine studies met inclusion criteria. Autism and diabetes were most frequently addressed (each n=10), followed by congenital heart disease, asthma, and obesity (each n=4). Six cross-cutting themes emerged: (1) accessibility/usability (mobile-first, personalization); (2) content/information (evidence-based, plain language, tailored to diagnosis); (3) coordination (central hubs for plans, reminders, tracking); (4) consultation with clinicians (secure two-way messaging/video); (5) psychosocial support (moderated peer communities, coping resources); and (6) data protection (transparency and control over sharing). Evidence on how needs shift across care stages was limited but suggested heightened value early after diagnosis and during long-term management.
CONCLUSIONS:
Parents value e-Health tools that reduce coordination burden and provide trustworthy, tailored support, but adoption depends on usability, personalization, and transparent data governance. Future research should examine needs longitudinally and inform hybrid designs combining cross-diagnosis coordination features with condition-specific modules to strengthen family-centered chronic care.
| eISSN: | 2654-1459 |
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