Improving the Quality of Care Coordination for Children and Young People with Intellectual Disability/Developmental...

Background/Objectives: Children and young people with intellectual disability/developmental disorder (ID/DD) face inequities in hospital care, including poor communication, limited reasonable adjustments, and fragmented coordination. This study examined the presence of care coordination elements within staff and caregiver experiences and explored how these practices were influenced by a locally delivered staff training program implemented in a tertiary paediatric emergency department (ED) in New South Wales, Australia (Motivated for Change). Methods: A qualitative pre-post design was used, incorporating staff and caregiver interviews and ED observations to evaluate the program. This study included 22 observations (10 baseline, 12 post-intervention) and 15 interviews (six baseline, nine post-intervention) with staff and caregivers. The intervention included three one-hour training sessions and practical tools such as the digital Top 5 Tile This study represents a secondary use of existing data, applying a previously established care coordination framework and its associated definitions. Data were analysed using the framework method by five members of the research team. Results: Post-intervention, staff more consistently engaged parents and caregivers, made tailored adjustments, and used the Top 5 Tile to support information continuity. Child life therapists played a pivotal role in advocating for families and modelling inclusive practices. The findings mapped strongly to the framework domains of communication, proactive care planning, and aligning resources to needs, though systemic constraints remained. Conclusions: Targeted training and structured tools can strengthen care coordination for children and young people with ID/DD in EDs, improving safety and quality of care. Broader implementation across other departments and evaluation of sustainability are warranted.