CHESS - Complexity in health, education, and social support.
Research type
Research Study
Full title
CHESS – Complexity and outcomes in health, education, and social support for children and young people with life-limiting conditions: establishing a multisectoral collaborative and conceptual framework to advance evidence and practice.
IRAS ID
356844
Contact name
Richard Harding
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
NIHR207608, Funder Reference Number - NIHR; Registration Pending, Clinicaltrials.gov
Duration of Study in the UK
0 years, 9 months, 31 days
Research summary
Children and their families living with health conditions that are likely to shorten their lives often need care and support from health, social care, and education services. One way that health services try and identify children needing the greatest input from professionals is to consider 'complexity' of care needs but we not know yet how to measure 'complexity' that includes their health, social care, and education needs.
Our goal is to conduct research that leads to high-quality care across health, social care, and education organised around any child with medical complexity. We want to make sure that we hear from children and parents from groups which are often not heard e.g. those from minoritised ethnic groups, those who face greater financial challenges, or with learning disabilities that communicate non-verbally.
This study is part of a larger study comprising an NIHR grant funded project to define and assess medical complexity for children and young people suffering from life-limiting or life-threatening conditions. This protocol describes a qualitative study with two consecutive stages. Stage 1 is an interview study with children and young people, their parents or carers, bereaved parents, and professionals from health, social care, and education to ask their thoughts on what 'complexity' might mean for these children, how to identify it, and how best to meet a child's needs. Stage 2 will involve three workshops with researchers, parents/carers of children with life-limiting conditions, and professionals working in healthcare, social care, or education sectors to develop a logic model of multisector complex care and one final workshop to develop a consensus definition of 'complexity' in multisector care through the nominal group technique.
A key output of this study is the formation of a long-term collaboration to continue this important work and to improve care for children with medical complexity.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
25/LO/0755
Date of REC Opinion
18 Nov 2025
REC opinion
Further Information Favourable Opinion