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

NCT07102433 | Not Yet Recruiting

• 2 other identifiers: IRAS 356844NIHR207608
• Study Type: observational
• Target: 170
• Locations: 1 country
• Sites: 5

Brief 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

Keywords

Medical complexity; Pediatric palliative care; Life-limiting conditions; Life-threatening conditions; Children and young people

Outcome Measures

Primary Outcomes (3)

• Study Objective

  Use findings from stakeholder interviews and workshops to develop a cross-sector evidence-based conceptual model of complexity to inform delivery and assessment of high quality and integrated care.

  Total Duration of study - August 2025 to July 2026.

• Interviews - Research Question

  What does 'complexity' mean to stakeholders in relation to children with life-limiting conditions, with respect to their health, social care, and educational needs and how they are understood, planned, and delivered?

  Total study duration - August 2025 to July 2026

• Workshops Research Questions

  1. How is 'complexity' defined and operationalised across health, social care, and education for children and young people with life-limiting conditions? 2. What components and processes are important for the delivery of integrated complex care? 3. What outputs and indicators signal 'complexity' and appropriate care delivery? 4. Which processes and outcomes are meaningful to evaluate?

  Total study duration - August 2025 to July 2026

Study Arms (1)

Interview and Workshop Participants

Interview and workshop participants will be formed from the following inclusion criteria: Children and Young People (CYP): * Aged 5-17 years * Diagnosed with a life-limiting condition (as defined by Together for Short Lives) Parents/Carers: * Parent/carer of a child aged 0-17 years with a life-limiting condition * Bereaved parent, where bereavement occurred ≥3 months ago Professionals (Health, Social Care, Education): * Working with CYP with life-limiting conditions for at least 6 months * Includes medical, nursing, allied health, social care, and educational professionals Workshop Participants: * Any of the above stakeholder types * Must be able to provide informed consent or assent

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

Interventions

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

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

Interview and Workshop Participants

Eligibility Criteria

• Age: 5 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study population comprises: (1) children and young people aged 5-17 years with a life-limiting condition; (2) parents or carers of children aged 0-17, including bereaved parents (≥3 months post-bereavement); and (3) professionals from health, education, and social care with ≥6 months' experience supporting this population. Participants will be recruited from five NHS and hospice sites across England, selected for variation in geography, population served, and service model. Purposive sampling will be used to ensure diversity in age, diagnosis, ethnicity, socioeconomic status, and care setting. Professionals will be drawn from a range of disciplines across sectors using our professional networks.

You may qualify if:

• Children (5-17 years) with any life-limiting condition defined using the UK Together for Short Lives widely adopted 4 categories of life-limiting/life-threatening conditions among children.
• Parents/carers of children (0-17 years old) with a life-limiting conditions.
• Bereaved parents of a child who had a life-limiting condition (at least 3 months since bereavement).
• Healthcare professionals (medicine, nursing, allied health professionals), social care providers, education teaching and therapy staff with \> 6 months experience of caring for children with life-limiting conditions.

You may not qualify if:

• Children unable to communicate via an interview, using 'draw and talk' or play methods, Talking MatsTM, or via their parents.
• Children that speak languages not supported by NHS translation services.
• Any child or young person for whom the PI believes participation in the study may induce undue psychological distress.
• Parents/carers are unable to provide consent/assent to participate in interviews.
• Parents/carers that speak languages not supported by NHS translation services.
• Parents who are recently bereaved (\<3 months).
• Any parent/carer for whom the PI believes participation in the study may induce undue psychological distress (e.g. parents of children who may be receiving end-of-life care).
• Professionals with \<6 months experience of caring for children with life-limiting conditions.
• Stage 2 - Workshops
• Parents or carers of children with a life-limiting condition (0-17 years old).
• Bereaved parents of a child who had a life-limiting condition (at least 3 months since bereavement).
• Researchers working with or in the field of complexity in children with life-limiting conditions.
• Professionals across child health, social care, and education with experience of working with children with life-limiting conditions for \>6 months.
• Professionals across child health, social care, and education with \<6 months of experience working with children with life-limiting conditions.
• Parents, carers, or professionals that are unable to provide consent or assent.

Sponsors & Collaborators

• King's College London: lead
• National Institute for Health Research, United Kingdom: collaborator

Study Sites (5)

Birmingham Children's Hospital

Birmingham, B46NH, United Kingdom

Location

Chailey Clinical Services, Sussex Community NHS Foundation Trust

Chailey, BN84JN, United Kingdom

Location

Shooting Star Children's Hospices

Hampton, TW12 3RA, United Kingdom

Location

Guy's and St Thomas' NHS Foundation Trust

London, SE1 9RT, United Kingdom

Location

Royal Marsden Hospital

London, SW36JJ, United Kingdom

Location

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Related Links

• The CoLab Partnership
• PROSPERO Registration: A realist review of multisectoral integrated care for children and young people with medical complexity.
• UK Standards for Public Involvement
• Difference between children's and adult palliative care.\[online\]. (Together for Short Lives
• Hope House Children's Hospices

MeSH Terms

Interventions

Caregivers; Educational Status

Intervention Hierarchy (Ancestors)

Health Personnel; Health Care Facilities Workforce and Services; Socioeconomic Factors; Population Characteristics

Study Officials

• Fliss Murtagh

  Hull York Medical School

  PRINCIPAL INVESTIGATOR

• Mary Baginsky

  King's College London

  PRINCIPAL INVESTIGATOR

• Diane Sellers

  Chailey Clinical Services, Sussex Community NHS Foundation Trust

  PRINCIPAL INVESTIGATOR

• Lucy Coombes

  Royal Marsden NHS Foundation Trust

  PRINCIPAL INVESTIGATOR

• Mary Salama

  Birmingham Children's Hospital

  PRINCIPAL INVESTIGATOR

• Bobbie Farsides

  Brighton and Sussex Medical School

  PRINCIPAL INVESTIGATOR

• Gabriella L Walker

  Patient and Public Representative

  PRINCIPAL INVESTIGATOR

• Pru Holder

  King's College London

  PRINCIPAL INVESTIGATOR

• Abinaya Chandrasekar

  King's College London

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Richard Harding, PhD

CONTACT

02078485518; richard.harding@kcl.ac.uk

Lorna Fraser, PhD

CONTACT

richard.harding@kcl.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 28, 2025
• First Posted: August 3, 2025
• Study Start: December 1, 2025
• Primary Completion (Estimated): July 31, 2026
• Study Completion (Estimated): July 31, 2026
• Last Updated: November 14, 2025

Record last verified: 2025-07

Data Sharing

• IPD Sharing: Will not share

Locations

GB (5)