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.
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 170
- 试验地点
- 5
- 主要终点
- Study Objective
研究概览
简要总结
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.
详细描述
- 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.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Other
入排标准
- 年龄范围
- 5 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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.
排除标准
- •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.
研究组 & 干预措施
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
干预措施: Children and young people with life-limiting conditions, their parents/carers, and professionals across healthcare, education, and social care sectors. (Other)
结局指标
主要结局
Study Objective
时间窗: Total Duration of study - August 2025 to July 2026.
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.
Interviews - Research Question
时间窗: Total study duration - August 2025 to July 2026
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?
Workshops Research Questions
时间窗: Total study duration - August 2025 to July 2026
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?
次要结局
未报告次要终点