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

Official title

CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions: Establishing a Multisectoral Collaboration and Conceptual Framework to Advance Evidence and Practice.

Overview

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.

Detailed description

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.

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.

Primary outcome measures

• Study Objective [Time frame: Total Duration of study - August 2025 to July 2026.]
• Interviews - Research Question [Time frame: Total study duration - August 2025 to July 2026]
• Workshops Research Questions [Time frame: Total study duration - August 2025 to July 2026]

Eligibility criteria

Stage 1 - Interviews

Inclusion criteria

• 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.

Exclusion criteria

• 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

Inclusion criteria

• 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.

Exclusion criteria

• 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.
• Children with life-limiting/life-threatening conditions will not be included in the workshops
• Parents who are recently bereaved (<3 months) of a child who had a life-limiting condition.

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: No

Study design

Observational model

Other

Study locations

United Kingdom · 5 centers

• Birmingham Children's Hospital — Birmingham
• Chailey Clinical Services, Sussex Community NHS Foundation Trust — Chailey
• Shooting Star Children's Hospices — Hampton
• Guy's and St Thomas' NHS Foundation Trust — London
• Royal Marsden Hospital — London

Publications

• Rahimzadeh V, Bartlett G, Longo C, Crimi L, Macdonald ME, Jabado N, Ells C. Promoting an ethic of engagement in pediatric palliative care research. BMC Palliat Care. 2015 Oct 16;14:50. doi: 10.1186/s12904-015-0048-5. PMID 26474573
• Low, J. (2019). A pragmatic definition of the concept of theoretical saturation. Sociological Focus 52(2), 131-139.
• Fields D, Fraser LK, Taylor J, Hackett J. What does 'good' palliative care look like for children and young people? A qualitative study of parents' experiences and perspectives. Palliat Med. 2023 Mar;37(3):355-371. doi: 10.1177/02692163231154300. Epub 2023 Feb 24. PMID 36825577
• Fisher V, Atkin K, Fraser LK. The health of mothers of children with a life-limiting condition: A qualitative interview study. Palliat Med. 2022 Oct;36(9):1418-1425. doi: 10.1177/02692163221122325. Epub 2022 Sep 14. PMID 36113084
• Namisango E, Bristowe K, Murtagh FE, Downing J, Powell RA, Abas M, Lohfeld L, Ali Z, Atieno M, Haufiku D, Guma S, Luyirika EB, Mwangi-Powell FN, Higginson IJ, Harding R. Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study. Palliat Med. 2020 Mar;34(3):319-335. PMID 32081084
• Coombes LH, Wiseman T, Lucas G, Sangha A, Murtagh FE. Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliat Med. 2016 Dec;30(10):935-949. doi: 10.1177/0269216316649155. Epub 2016 May 31. PMID 27247087
• Coombes L, Harethardottir D, Braybrook D, Roach A, Scott H, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Fraser LK, Murtagh FEM, Harding R. Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members. Patient. 2023 Sep;16(5):473-483. doi: 10.1007/s40271-023-00627 PMID 37221441
• Scott HM, Coombes L, Braybrook D, Roach A, Harethardottir D, Bristowe K, Ellis-Smith C, Downing J, Murtagh FE, Farsides B, Fraser LK, Bluebond-Langner M, Harding R. Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliat Med. 2023 Jun;37(6):856-865. doi: 10.1177/02692163231165101. Epub 20 PMID 36978266

Identifiers

NCT: NCT07102433 · IRAS 356844 · NIHR207608

Primary sources (government registries)

• ClinicalTrials.gov (US NIH)

View this study on ClinicalTrials.gov ↗