Understanding what makes care complex for children and young people with serious illnesses

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The CHESS study seeks to build a shared, evidence-informed understanding of complexity in pediatric life-limiting conditions. It involves a multidisciplinary team and is funded by NIHR to lay groundwork for future design and implementation work. The project collects perspectives from children aged 5-17, parents, bereaved families, and professionals across healthcare, education, and social care. Activities include interviews and qualitative methods to map how medical, educational, and social needs intersect and how services can be better integrated. The aim is to inform resource allocation, service design, and policy to improve coordinated care for this vulnerable population.

Why it matters

Who can join: the full rules

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.

Where it's running

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

Study contacts

• Principal investigator: Fliss Murtagh — University of Hull
• Study coordinator: Richard Harding, PhD
• Email: richard.harding@kcl.ac.uk
• Phone: 02078485518

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Improved method to measure bone blood flow with total-body PET/CT in healthy adults

  This study tests whether a whole-body PET/CT scan using a safe radioactive tracer can measure bone blood flow in healthy volunteers aged over 50.

  Recruiting King's College London · London · NCT07860346

• Arterial stiffness in children and young people with CKD and hypertension

  This study will test whether arterial stiffness is higher in children and young people with chronic kidney disease and high blood pressure compared with their peers, using a one-time assessment and follow-up for those with high BP.

  Recruiting King's College London · London, Greater London · NCT07768865

• Colchicine in dialysis patients: a feasibility test

  This study tests whether a low daily dose of colchicine is tolerable for adults on haemodialysis over 3 months.

  Recruiting King's College London · London · NCT07762807

• Cannabis-based cannabinoids and sleep-restricted stress study in healthy adults

  This study tests whether THC, CBD, or a combination can influence stress and arousal in sleep-deprived healthy adults who report higher anxiety.

  Recruiting King's College London · London, London · NCT07656350

• Novel functional snack and perimenopause: does a fibre- and phytochemical-rich bite help symptoms?

  A daily snack enriched with phytochemicals and fiber is being tested to see if it can reduce perimenopausal symptoms and improve well-being in women aged 40–55 who are not using hormone therapy.

  Recruiting King's College London · London, London · NCT07599930

• Effects of plant foods on gut health and heart health in healthy adults

  This study tests whether two plant-based diets have different effects on gut microbiota diversity and metabolic health in healthy adults aged 30–70.

  Recruiting King's College London · London · NCT07586111

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.