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

1. Background and Rationale

   Children and young people living with life-limiting conditions (LLCs) represent a population with profoundly complex and multidimensional needs. These conditions, which include both life-limiting and life-threatening diagnoses, are characterised by an absence of curative options and, in many cases, uncertain illness trajectories. Advances in medical care mean that children often survive longer than previously expected, but with increasing medical, social, and educational complexity.

   Care for this group typically spans multiple sectors: highly specialised medical teams, allied health professionals, children's hospices, social services, and educational systems. Parents frequently report fragmented services, difficulties in navigating between health, education, and social care, and inequitable access to essential resources such as medical technologies, equipment, and tailored educational support. Despite being a relatively small population, these children account for disproportionately high resource utilisation, including frequent and prolonged hospital admissions, intensive care stays, and substantial reliance on community-based services.

   The absence of a shared definition of "complexity" across health, education, and social care settings poses a major barrier to effective care delivery. Services lack a consistent framework for recognising, measuring, and responding to complexity, resulting in inequitable distribution of resources and difficulties in evaluating outcomes. Research into children with neurodisability has attempted to capture aspects of complexity, but such tools are impractical in routine settings and insufficiently inclusive of the breadth of needs among children with LLCs.

   Previous initiatives have shown progress in developing outcome measures in paediatric palliative care and in mapping models of end-of-life care. However, no work has systematically brought together children, families, professionals, and policy stakeholders across sectors to build a conceptual model of complexity. In contrast, adult palliative care in the UK has successfully developed and implemented classification frameworks that inform both care and policy. A similar evidence base is urgently needed for children.

   The CHESS study (Complexity in Health, Education, and Social Support) addresses this evidence gap. By drawing on interviews with children, parents, and professionals, and by convening cross-sector workshops, this study will generate a consensus definition of complexity and a logic model of integrated multisector care. This framework will inform the development of a child-centred, nationally applicable classification system for future research and service planning.

2. Study Purpose and Objectives

   The overarching purpose of CHESS is to build an evidence-based conceptual model of complexity in children with LLCs that is recognised across health, education, and social care sectors. This study is funded by the UK National Institute for Health and Care Research (NIHR) through a Programme Development Grant, and its outputs will underpin a future Programme Grant to design and test a case-mix classification for integrated care.

   Primary Objective

   To develop a cross-sector, evidence-based conceptual model of complexity for children with LLCs, derived from qualitative interviews and stakeholder workshops.

   Stage 1: Interviews

   To capture the perspectives of children, parents (including bereaved parents), and professionals on the meaning and operationalisation of "complexity."

   To understand children's experiences of their care needs, the supports they value, and barriers to meeting these needs.

   To identify parents' views on gaps in provision and how complexity influences the challenges they face.

   To explore professionals' definitions of complexity and their approaches to care planning.

   Stage 2: Workshops

   To build consensus on how complexity is defined and operationalised across sectors.

   To identify key components, processes, and outcomes essential for delivering integrated care.

   To develop a logic model of integrated care, with agreed indicators and outputs that reflect complexity.

   Secondary Objectives

   To establish a collaborative research partnership across multiple disciplines and sectors.

   To generate findings that support equitable resource allocation and guide future policy.

   To strengthen patient and public involvement (PPI) in conceptualising and shaping research on complexity.

3. Study Design and Methodology

   This is a qualitative, multi-stage study consisting of two sequential components:

   Stage 1 - Semi-structured Interviews

   Participants: children (aged 5-17 years), parents/carers (including bereaved parents and parents of children aged under 5), and professionals (health, social care, education).

   Purpose: to capture diverse views on complexity, using purposive sampling to ensure variation in age, condition, ethnicity, socio-economic status, and professional background.

   Method: in-depth, semi-structured interviews, supported by age-appropriate tools (e.g., Talking Mats™, draw/play methods).

   Stage 2 - Stakeholder Workshops

   Three initial workshops (~30 participants each) involving parents, professionals, researchers, and carers.

   A final consensus workshop (~30 participants) using Nominal Group Technique to refine definitions and logic models.

   Data: transcripts and facilitated discussions analysed to develop a consensus definition and a framework for integrated care.

   The design is informed by a pragmatist research paradigm, acknowledging the experiential and contextual nature of complexity. Appreciative Inquiry principles will guide workshops, focusing on "what works" in integrated care.

   Study Duration: 9 months 31 days.

4. Participants: Eligibility and Recruitment 4.1 Children and Young People

   Inclusion

   Aged 5-17 years.

   Diagnosed with a life-limiting condition (as defined by Together for Short Lives).

   Able to communicate verbally, through play/drawing, Talking Mats™, or via a parent proxy.

   Exclusion

   Unable to communicate using available methods.

   Non-English speakers where NHS translation services are unavailable.

   Considered by clinical staff at participating centres to be at risk of undue distress.

   Recruitment

   Through NHS trusts, hospices, and community organisations serving children with LLCs.

   Care teams identify eligible children and seek parental consent for contact.

   4.2 Parents and Carers

   Inclusion

   Parents/carers of children aged 0-17 years with an LLC.

   Bereaved parents (>3 months since bereavement).

   Exclusion

   Recently bereaved (<3 months).

   Unable to provide informed consent.

   At risk of psychological harm if participating.

   4.3 Professionals

   Inclusion

   Healthcare (medicine, nursing, allied health), social care, or education professionals with ≥6 months' experience caring for children with LLCs.

   Exclusion

   Professionals with <6 months' experience.

   4.4 Workshop Participants

   Drawn from interview participants and wider networks.

   Must be able to provide informed consent.

   Children are not included in workshops.

   Sample Size Estimates

   Interviews: 10-20 children, ≥30 parents/carers, ≥30 professionals.

   Workshops: ~90 participants across three initial workshops and one consensus session.

5. Study Procedures 5.1 Interviews

   Conducted face-to-face or via secure video (Microsoft Teams).

   Duration: children (30-60 min), parents (60-90 min), professionals (~60 min).

   Interviews will be audio-recorded, transcribed verbatim, pseudonymised.

   Children's interviews will include rapport-building, discussion of daily life, care needs, support experiences, and hopes for improvement.

   Parents will be asked about daily care, experiences with services, barriers, and views on complexity.

   Professionals will discuss definitions of complexity, service challenges, and approaches to integration.

   Participants will receive £20 vouchers and reimbursement for travel/childcare.

   5.2 Workshops

   Conducted remotely via Microsoft Teams to maximise accessibility.

   Three initial workshops will generate broad definitions and frameworks.

   A final workshop will synthesise findings using Nominal Group Technique.

   Outputs: consensus definition of complexity and a preliminary logic model.

6. Data Management and Analysis Plan

   All identifiable data (e.g., consent forms, audio/video files) will be stored separately from transcripts.

   Data will be held on secure, password-protected King's College London SharePoint servers.

   Audio files will be transcribed by a GDPR-compliant service; audio destroyed after transcription.

   Video recordings of Talking Mats™ sessions will be analysed then deleted.

   Interview data will be analysed using Framework Analysis, ensuring transparency, coding consistency, and traceability.

   Workshop data will be analysed using Nominal Group Technique and the CDC guide for developing logic models.

   Emergent findings will be triangulated across children, parents, and professionals.

7. Statistical Considerations

   This is a qualitative study; no hypothesis testing or quantitative statistical modelling is planned. Sample sizes are based on principles of pragmatic saturation, ensuring adequate diversity and depth of data.

   Interviews: expected saturation with ~60-80 participants.

   Workshops: sufficient numbers to capture balance between parents and professionals, with consensus tested through structured group methods.

8. Ethics, Safety, and Risk Management

   Ethical Review: The study requires NHS REC and HRA approval.

   Informed Consent/Assent

   Parents provide written consent for themselves and for children under 16.

   Children aged 5-15 provide assent; those aged 16-17 provide consent where capacity is confirmed.

   Bereaved parents must be at least 3 months post-bereavement.

   Managing Distress

   Researchers trained in qualitative methods for sensitive topics.

   Distress protocol includes pausing/stopping interviews, signposting to support, and notifying care teams if needed.

   No disclosure of prognosis or new medical information will occur during interviews.

   Adverse Events

   Although AEs and SAEs are unlikely in qualitative research, any unexpected events (e.g., acute distress) will be recorded and reported according to NIHR and sponsor policies.

   Safeguarding

   The study complies with NIHR and KCL safeguarding guidelines.

   Children may have a parent or trusted adult present during interviews.

9. Oversight, Roles, and Responsibilities

   Sponsor: King's College London - responsible for study initiation, management, and monitoring.

   Funder: NIHR Programme Development Grant (NIHR207608).

   Chief Investigator: Prof. Richard Harding (Cicely Saunders Institute).

   Co-Investigators: Multidisciplinary team spanning paediatric medicine, social care, ethics, education, and patient/public representation.

   Steering Committee: Includes patient and public involvement (PPI) members and professionals, meeting monthly to guide recruitment, methodology, and interpretation.

   Auditing/Monitoring: Sponsor may audit per UK Policy Framework for Health and Social Care.

10. Dissemination and Impact

Findings will inform the development of a cross-sector conceptual model of complexity, which will underpin a subsequent NIHR Programme Grant proposal. Dissemination plans include:

Peer-reviewed publications in palliative care, paediatrics, education, and social policy journals.

Presentations at international conferences.

A public launch of the consensus definition, involving parents and carers.

Sharing findings with NHS England, local authorities, and professional associations.

Lay summaries and online dissemination co-developed with PPI representatives.

Ultimately, the study aims to provide a nationally applicable, child-centred framework for understanding complexity in LLCs, enabling more equitable service design, evaluation, and resource allocation.