“It cannot depend solely on the parents”—professionals’ perspectives on patient journeys of children with chronic conditions across health and social care in Germany

Abstract

Abstract Purpose Professionals in healthcare, social services and the education system are confronted with a growing number of children with chronic conditions. Complex treatment plans, care coordination and cross-system care needs result in additional demands on professionals. This study aimed to explore professionals’ perspectives on the patient journeys of children with chronic conditions in Germany and identify opportunities to improve care. Methods This qualitative study used semi-structured interviews conducted from May 2023 to February 2024. A purposive sample of professionals working with children with chronic conditions (attention-deficit/hyperactivity disorder, autism spectrum disorder, developmental disorders, cerebral palsy, bronchial asthma, type 1 diabetes) was recruited from the health, social care, and education systems in Germany. Sampling was guided by an assessment of thematic saturation. Data were analysed using structuring qualitative content analysis. Results Twenty-two professionals participated, including physicians ( n = 7), therapists ( n = 8) and social workers and counsellors ( n = 7). Care was perceived as fragmented, difficult to navigate, and poorly coordinated across health, social care, and education systems. Key barriers included long waiting times, unclear care pathways, and limited interprofessional communication. Greater difficulties in navigating care and support were perceived among families facing socioeconomic disadvantage or language barriers. Conclusion Professionals perceived current care structures as insufficiently meeting the needs of children with chronic conditions, particularly where families face greater barriers to navigating services. Strengthening cross-system coordination and accessibility may improve patient journeys. Future research should examine how barriers vary according to socioeconomic circumstances and across stages of the patient journey and evaluate condition-independent approaches to improving care. Trial registration: This study was registered in the German Clinical Trials Register, ID: DRKS00032139, on 07 November 2023. What is Known: • Research on patient journeys of children with chronic conditions has primarily focused on individual, often rare, conditions. • Evidence spanning multiple chronic conditions and the healthcare, social services, and education systems remains highly limited. What is New: • Drawing on diverse professionals’ perspectives, this study provides a cross-system, cross-condition view of paediatric patient journeys. • It identifies common barriers to care coordination and access across systems and diagnoses, highlighting actionable opportunities for integrated care.

The authors' abstract, as published at the source. European Journal of Pediatrics, 2026 · DOI ↗