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

Summary

Children and young people (CYP) with life-limiting conditions represent a growing population with complex care needs that span health, education, and social care systems. These children often have multiple diagnoses, rely on medical technologies, and experience prolonged trajectories of illness. Despite this, care remains fragmented, services are poorly integrated, and definitions of "complexity" are variable, inconsistent, and inadequately reflect the lived experience of families and the perspectives of professionals.

The CHESS (Complexity in Health, Education, and Social Support) study aims to develop a shared, evidence-informed understanding of "complexity" in the context of CYP with life-limiting conditions. The study will be delivered by a multi-disciplinary, multisectoral research team and is funded by a National Institute for Health and Care Research (NIHR) Programme Development Grant. This research will provide the foundational work to inform the design and implementation of a future NIHR Programme Grant focused on the development and testing of a child-centred, nationally applicable case mix classification system to support integrated multisector care and resource allocation.

This qualitative study involves two stages. Stage 1 consists of semi-structured interviews with (i) CYP aged 5-17 years with a life-limiting condition, (ii) parents/carers (including bereaved parents and parents of children aged under 5 years), and (iii) professionals across healthcare, social care, and education sectors. These interviews aim to elicit stakeholder understandings of "complexity," how it is experienced and enacted in care, and the implications for service access, coordination, and outcomes.

Stage 2 comprises a series of stakeholder workshops to review, refine, and synthesise findings from Stage 1 and a parallel realist review. Using consensus methods including the Nominal Group Technique, the workshops will co-develop a cross-sectoral conceptual definition of "complexity" and produce a logic model to guide integrated care delivery for this population.

The CHESS study seeks to address a critical evidence gap in how complexity is understood, measured, and supported across systems. By incorporating the voices of children, families, and professionals across sectors, this study will generate new conceptual clarity, build a foundation for improved outcomes, and contribute directly to the national agenda on equity, quality, and integration in paediatric palliative and complex care.

Conditions

• Complex Care
• Medical Complexity
• Pediatrics
• Life-limiting Illness
• Life-threatening Illness

Interventions

OTHER

Children and young people with life-limiting conditions, their parents/carers, and professionals across healthcare, education, and social care sectors.

Children and young people with life-limiting conditions, their parents/carers, and professionals across healthcare, education, and social care sectors.

Sponsors & Collaborators

• National Institute for Health Research, United Kingdom

  collaborator OTHER_GOV

• King's College London

  lead OTHER

Principal Investigators

• Fliss Murtagh · Hull York Medical School

• Mary Baginsky · King's College London

• Diane Sellers · Chailey Clinical Services, Sussex Community NHS Foundation Trust

• Lucy Coombes · Royal Marsden NHS Foundation Trust

• Mary Salama · Birmingham Children's Hospital

• Bobbie Farsides · Brighton and Sussex Medical School

• Gabriella L Walker · Patient and Public Representative

• Pru Holder · King's College London

• Abinaya Chandrasekar · King's College London

Eligibility

Min Age

5 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2025-12-01

Primary Completion

2026-07-31

Completion

2026-07-31

Countries

• United Kingdom

Study Locations