The rising prevalence of chronic conditions in children presents a major challenge for overburdened care systems. Despite high per-patient healthcare costs, affected children report lower health related quality of life and social participation compared to healthy children. By investigating children’s patient journeys in Germany, this study explores experiences of children and their caregivers with navigating care systems and identifies common challenges that may serve as leverage points for system improvement. In a cross-indication, cross-system approach, semi-structured interviews were conducted with a purposive sample of children aged between 3 and 17 years (n = 17) and their caregivers (n = 22) between May 2023 and February 2024. The investigated time period ranged from the first onset of symptoms to the current point in the care trajectory. Diagnoses included were ADHD, autism, developmental disorders, cerebral palsy, bronchial asthma, and type 1 diabetes. Verbatim interview transcripts were analysed using thematic analysis to identify patterns and key themes across participant groups. Several factors were identified that lead to a burden for children with chronic conditions and their caregivers: (1) A fragmented healthcare landscape characterised by limited interdisciplinary and interprofessional collaboration and a lack of continuity in care. (2) The insufficient integration of services across healthcare, social services, and the education system, which places the responsibility on parents to bridge information gaps and coordinate services. (3) Limited availability of services, resulting in long waiting times and impeding timely, needs-based care according to child developmental stage and (4) the absence of a family-centred perspective on healthcare. This results in disproportional burdening of families with lower socioeconomic status, impeding access to healthcare, education, psychosocial well-being and long-term life opportunities for the child. Coordinated, timely, and developmentally appropriate care across medical, educational, and social systems is vital for children with chronic conditions. Interventions should align with the WHO framework on integrated, people-centred health services, ensuring cross-system continuity and addressing both child and family needs. This study was pre-registered in the German Register for Clinical trials (DRKS00032139) on 07 November 2023.
Herr et al. (Fri,) studied this question.