Developing a Shared Understanding of Complexity in Health, Education, and Social Support for Children and Young People Aged 5 to 17 With Life-Limiting Conditions

What this Trial Is About

Children and young people with life-limiting conditions often face complex health, educational, and social care needs that are not well coordinated. This study aims to develop a shared, evidence-based understanding of complexity for this group by involving children, their families, and professionals across sectors. It is funded by the National Institute for Health and Care Research and will support future efforts to design integrated care tools and resource allocation systems. The study involves two main parts. First, interviews will be conducted with children aged 5 to 17 years, their parents or carers including bereaved parents, and professionals from healthcare, social care, and education. These interviews explore experiences of complexity and its impact on care and services. Second, a series of remote workshops will bring together stakeholders to review findings, reach agreement on a definition of complexity, and create a logic model for integrated care. Participants will take part in interviews lasting 30 to 90 minutes, either face-to-face or via secure video calls, with support for different communication methods. Workshops will be held online and involve around 30 participants each. Data will be securely stored and analyzed to develop consensus definitions and frameworks. The study will last about 10 months, with careful ethical oversight and support for participants to minimize distress.

Complexity in Health, Education, and Social Support for Children and Young People With Life-limiting Conditions.