RecruitingNot SpecifiedObservational

Helping optimise primary care support during transition from children’s hospice care

The HOPSCOTCH study wants to improve how young people with life-limiting conditions move from children's hospice care to adult healthcare services. Many more young people are living longer, so this move is becoming more common. However, they often don't get the same level of care as children or older adults during this time. GPs play a vital part in care, but they are not always involved in this transition. This study will create a 'toolbox' of resources to help GPs and families better support young people. Researchers will talk to young people, families, and healthcare workers to understand their experiences and work together to design and test these new tools.

At a glance

Status

Recruiting

Phase

Not Specified

Sponsor

University of Leeds

Enrolment target

Start

01 Sep 2025

Estimated completion

31 Aug 2026

Primary care support during transition from children’s hospice care

What is this study about?

This study is called HOPSCOTCH and its main goal is to make the move from children's hospice services to adult healthcare much easier and better for young people with long-term, life-limiting conditions. In the past, children's hospices could care for young people well into adulthood. However, because medical care has improved, more young people are living longer, and the demand for care is growing. This means that when young people become adults, they now need to switch to adult healthcare services.

While good end-of-life care is a right for everyone in the UK, young people often find that the care they receive during this switch isn't as good as what children or older adults get. Your local doctor, often called a GP, is really important for providing good care, but many GPs aren't currently involved in helping young people make this big transition. This study plans to create helpful resources, almost like a toolkit, to give GPs the information and support they need to play a much bigger role in looking after young people during this time.

The researchers will talk to young people, their families, GPs, and hospice staff to understand what currently works well and what could be improved. Everyone involved will then work together to design the 'toolbox' – a collection of materials that will support young people, families, GPs, and hospices. The study will also try out this new toolbox with a small group of young people to see how well it works in real life, making sure it's practical and helpful.

Key takeaways

HOPSCOTCH aims to improve care for young people moving from children's to adult services.
It focuses on helping GPs provide better support during this transition.
Young people, families, and healthcare staff will help design new resources.
Your experiences can directly help improve future care for others.
The study runs from September 2024 to August 2027 and is funded by the NIHR.

Who may be eligible?

You might be able to take part in this study if you are a young person aged 14 or older with a long-term condition that means your life may be shorter. You should have used children's hospice services and either be about to move to adult services, in the middle of moving, or have completed this move in the last five years. We also need to make sure you are able to understand what the study involves and agree to take part in a discussion about your experiences.

Parents or carers of young people who fit the description above can also participate. This includes parents whose child may have passed away in the last five years, as long as their child experienced the move to adult services before their death. Parents and carers must be 18 years or older and be able to understand and agree to take part in a discussion.

Finally, healthcare professionals can also join the study. This includes GPs, staff from adult hospices, or children's hospices who are involved in helping young people move from children's to adult services. You must be 18 or older and be willing to share your experiences.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 14 years old or older?
Do you have a life-limiting condition?
Have you used children's hospice services?
Are you currently moving to adult services, or have you done so in the last 5 years?
As a parent/carer, is your child (14+ with a life-limiting condition) moving/moved to adult services?
Are you a healthcare professional involved in supporting this transition?

Answer every question to see your result.

What does participation involve?

If you take part in this study, you will be asked to share your thoughts and experiences in an interview. These interviews are designed to help the research team understand what kind of information and support would be most useful for GPs and families during this important transition period. Young people, families, doctors, and hospice staff will then work together in workshops to help create the 'toolbox' of resources. After the toolbox is created, the study will test how well it works in a real-life situation with 24 young people who are currently moving from children's to adult services. The total duration of your participation will depend on which parts of the study you are involved in (interviews, workshops, or testing the toolbox).

Potential risks and benefits

There is no payment for taking part in this study. However, your involvement is very valuable and will help improve care for young people and families in the future. By sharing your experiences, you'll have an opportunity for your voice to be heard. It's possible that talking about your experiences might bring up upsetting feelings. If this happens, the research team will offer suggestions of people you could talk to for support. The study team will also make sure that if anything is said during an interview that suggests someone is at serious risk of harm, they will contact the right people to help. You are always free to stop participating in the study at any time, for any reason.

Locations (10)

Noah's Ark Children's Hospice
Approximate
Barnet, United Kingdom
St Oswalds Hospice
Approximate
Newcastle upon Tyne, United Kingdom
Shooting Star Childrens Hospice
City only
Hampton, United Kingdom
Helen and Douglas House
Approximate
Oxford, United Kingdom
East Anglia's Children's Hospices
Approximate
Cambridge, United Kingdom
Children's Hospice South West
Unverified
Barnstaple, United Kingdom
Martin House Hospice
Unverified
Wetherby, United Kingdom
St Gemma's Hospice
Unverified
Leeds, United Kingdom
Marie Curie Hospice
Unverified
Bradford, United Kingdom
University of Leeds
Unverified
Leeds, United Kingdom

Common questions

What is the main purpose of the HOPSCOTCH study?

The study aims to create tools and resources to help young people with life-limiting conditions move smoothly from children's hospice care to adult healthcare services, with better support from their GPs.

Who can take part in this study?

Young people (aged 14+) who have used children's hospice services and are moving to adult care, their parents/carers, and healthcare professionals (GPs, hospice staff) involved in this transition can participate.

What will I have to do if I join the study?

You might be asked to take part in an interview to share your experiences, or work with others in workshops to help design helpful resources. Some young people may also try out the new tools.

Will I get paid for participating?

No, there is no payment for taking part, but your contribution will help improve care for many young people in the future.

What if talking about my experiences is upsetting?

The researchers understand this might happen and will offer suggestions for support if you become upset during an interview.

How to find out more

Emma Chapman

e.j.chapman@leeds.ac.uk +44 1133430863 Official trial record

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