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New study aims to decode 'Complexity' in care for seriously ill children

NCT ID NCT07102433

Knowledge-focused Sponsor: King's College London Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Aug 06, 2026 · Updated 2 times

Summary

This study is for children with life-limiting illnesses, their families, and the professionals who care for them. Researchers want to understand what 'complexity' really means in their care across health, school, and social services. By interviewing everyone involved, they hope to create a shared definition that leads to better, more joined-up support.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 170 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2025

Expected to finish

Sep 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The study population comprises: (1) children and young people aged 5-17 years with a life-limiting condition; (2) parents or carers of children aged 0-17, including bereaved parents (≥3 months post-bereavement); and (3) professionals from health, education, and social care with ≥6 months' experience supporting this population. Participants will be recruited from five NHS and hospice sites across England, selected for variation in geography, population served, and service model. Purposive sampling will be used to ensure diversity in age, diagnosis, ethnicity, socioeconomic status, and care setting. Professionals will be drawn from a range of disciplines across sectors using our professional networks.

Ages

5 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

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As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Complex care Life-limiting illness Life-threatening illness Medical complexity Pediatrics

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    5 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Birmingham Children's Hospital

    RECRUITING

    Birmingham, B46NH, United Kingdom

  • Chailey Clinical Services, Sussex Community NHS Foundation Trust

    RECRUITING

    Chailey, BN84JN, United Kingdom

  • Guy's and St Thomas' NHS Foundation Trust

    RECRUITING

    London, SE1 9RT, United Kingdom

  • Royal Marsden Hospital

    RECRUITING

    London, SW36JJ, United Kingdom

  • Shooting Star Children's Hospices

    RECRUITING

    Hampton, TW12 3RA, United Kingdom

More trials for these conditions

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