Not yet recruitingOBSERVATIONAL

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

The CHESS study looks at how challenging it can be to care for children and young people with serious, long-term conditions. These children often need different types of help from health, education, and social services, but this support isn't always well-connected. The study wants to find a clear, shared understanding of what 'complexity' means in this situation. Researchers will talk to children, parents, and professionals to hear their experiences. They'll also hold workshops to bring these ideas together. The goal is to lay the groundwork for better, more joined-up care that truly meets the needs of these children and their families.

At a glance

Status

Not yet recruiting

Sponsor

King's College London

Enrolment target

170

Start

01 Dec 2025

Estimated completion

31 Jul 2026

Complex Care Medical Complexity Pediatrics Life-limiting Illness Life-threatening Illness

What is this study about?

Children and young people with serious, long-term health conditions often need a lot of different kinds of support. This can include doctors and nurses, but also teachers and social workers. Sometimes, these services don't work together as smoothly as they should, making things harder for families. This study, called CHESS (Complexity in Health, Education, and Social Support), wants to understand this problem better.

The main idea behind CHESS is to figure out what 'complexity' truly means when it comes to these children. For example, it could mean having many different health problems, needing special equipment, or having care that involves many different organisations. Right now, everyone might have a slightly different idea of what 'complex' means, which can make it hard to plan and provide the best care.

The study hopes to create a shared understanding of this 'complexity' by listening to those who know it best: the children themselves, their parents and carers, and the professionals who support them. This shared understanding could then help improve how services are organised, making sure these children and their families get the right care at the right time, no matter where they live in the UK.

Key takeaways

This study focuses on improving care for children with serious long-term illnesses.
It aims to understand what 'complexity' means from different perspectives.
Children, parents, and professionals are invited to share their experiences.
The goal is to develop better, more joined-up support across health, education, and social care.
Participation involves sharing your story in an interview or attending workshops.
Your contribution could help shape future care for children with complex needs.

Who may be eligible?

This study is looking for several groups of people to share their experiences. If you're a child (aged 5-17) with a serious long-term health condition, you might be able to take part. Also, parents or carers of children with these conditions (from birth to 17 years old) are invited. Even parents who have sadly lost a child to a long-term condition, as long as it's been at least three months since the bereavement, can participate.

Healthcare professionals, social care workers, and education staff (like teachers or therapists) who have worked with children with serious long-term conditions for more than six months are also welcome. For children, it's important that they can express themselves, whether by talking, drawing, or using special communication tools. If participating might be too upsetting for a child or parent, they would not be included.

In the second stage of the study, there will be workshops. These are for parents (including bereaved parents), researchers in this field, and professionals from health, social care, and education who have worked with these children for over six months.

Quick self-check

Are you a child aged 5-17 with a life-limiting condition?
Are you a parent or carer of a child with a life-limiting condition?
If bereaved, has it been at least 3 months since your child passed away?
Are you a healthcare, social care, or education professional with over 6 months' experience working with these children?
Can you communicate effectively in an interview (e.g., by talking, drawing, or using communication tools)?
Are you able to provide consent to participate?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you take part in the first stage of this study, you would have a conversation (called an interview) with a researcher. This interview will be focused on your experiences and understanding of 'complexity' in relation to children with long-term conditions. For children, these interviews might involve drawing or playing to help them express themselves. The interviews will explore what it's like to access and coordinate different services, and what impact this has. The exact length isn't stated, but interviews usually last around an hour or two.

The second stage involves attending a series of workshops. These workshops would bring different people together to discuss and refine the ideas from the interviews and other research. The goal is to come up with a shared definition of 'complexity' and a plan for how to improve integrated care. The time commitment for workshops would be explained if you were invited to this stage.

Potential risks and benefits

A benefit of joining this study is that you can share your valuable experiences, which could help improve how care is provided for other children and families in the future. Your insights will directly feed into developing better systems for health, education, and social support. As with any discussion about personal experiences, there might be a risk of emotional upset, particularly if discussing challenging situations or bereavement. Researchers will be sensitive to this and will ensure support is available. You are always free to decide not to answer any questions or to stop participating at any time without giving a reason.

Locations (5)

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

Common questions

What is a 'life-limiting condition'?

These are serious illnesses that mean a child might not live into adulthood, or that they have significant health challenges throughout their life, often needing long-term care and support.

What does 'complexity' mean in this study?

The study wants to find out exactly what 'complexity' means to different people. It could refer to medical needs, getting different services to work together, or struggles families face daily.

Who is funding this research?

This study is funded by a grant from the National Institute for Health and Care Research (NIHR), a major UK research funder.

Will my information be kept private?

While the study details don't mention privacy specifically, all legitimate research involving people is legally and ethically required to protect your personal information and keep it confidential.

How will this study help children and families?

By creating a clearer, shared understanding of 'complexity', this study aims to lay the groundwork for better, more coordinated care and support services in the future.

How to find out more

Richard Harding, PhD

richard.harding@kcl.ac.uk 02078485518 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.