Investigating the clinical and cost-effectiveness of children’s early self-care support in children with neurodisability
Learning everyday tasks such as dressing, eating, and washing is an important part of growing up. Young children with conditions affecting the brain and nervous system (neurodisabilities) often need extra support to develop these skills. Right now, there are no national NHS guidelines on the best way to help them. The CHESS trial is comparing a new early self-care support programme with the standard therapy children usually receive. The study involves 40 NHS trusts across the UK and around 960 families. Half of the NHS teams will use the new CHESS programme, while the other half continue with standard care. Taking part will not change your child’s normal therapy appointments. Instead, parents simply complete questionnaires over 12 months about their child’s progress, daily life, and family wellbeing. The findings will help the NHS shape better services for the future.
At a glance
What is this study about?
Everyday activities like feeding oneself, getting dressed, and brushing teeth help children grow in confidence and independence. For children with physical, developmental, or neurological conditions, mastering these skills early in life can be challenging. Parents and therapists have shared that therapy services need clearer, more effective ways to support young children with these everyday goals.
The CHESS study (which stands for CHildren’s Early Self-care Support) was created to address this need. Researchers want to compare the CHESS support package against the standard therapy care already offered by the NHS. They want to see whether CHESS helps children achieve everyday goals more easily, improves quality of life for families, and represents good value for NHS funding.
About 40 NHS services across the UK are joining the study. Because this is a group trial, whole therapy teams are assigned to either use the new CHESS programme or continue with standard support. This lets researchers fairly compare how children progress under both approaches without disrupting families' normal healthcare routines.
Key takeaways
- Tests whether a new support programme (CHESS) helps young children develop everyday self-care skills.
- Open to children aged 12 months to 4.5 years receiving NHS community therapy for a neurodisability.
- Does not require any extra clinic visits or changes to your normal therapy schedule.
- Involves filling in a few questionnaires about your child's progress and your family's wellbeing over one year.
- Aims to create evidence to improve NHS therapy services across the UK.
Who may be eligible?
This study is open to young children aged between 12 months and 4 and a half years old who have a neurodisability (a condition affecting the brain, nerves, or development). The child must already be seeing an NHS community or outpatient therapist, such as an occupational therapist or physiotherapist. Both the family and the therapist must agree that the child would benefit from extra support with self-care skills, such as dressing, eating, or washing.
Children cannot take part if their only difficulties are related to vision or hearing, or if they have a condition that gets progressively worse over time (degenerative conditions). The study is also not suitable for children receiving a single, one-off advice session, those in hospital, or those receiving end-of-life care. Families with a brother or sister already in the study cannot join again.
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.
- My child is aged between 12 months and 4.5 years old.
- My child has a condition affecting the brain, development, or nerves (neurodisability).
- My child is currently seen by an NHS outpatient or community therapist.
- Both my family and the therapist agree my child needs help with everyday self-care skills (like eating or dressing).
- My child does not have a condition that progressively worsens over time.
What does participation involve?
If you take part, your child will keep seeing their regular NHS therapy team as planned. There are no extra hospital trips, and no experimental medicines or treatments are used.
Parents or carers will be asked to fill in questionnaires when joining the study, and then again after 6 months and 12 months. These surveys ask about your child's daily skills, family health, and wellbeing. At 9 months, there is also a short questionnaire about travel and healthcare costs. A small number of parents may also be invited to take part in an optional interview or group chat to share their thoughts on the care they received.
Potential risks and benefits
Locations (1)
- Sheffield Children's HospitalApproximateSheffield, England
Common questions
Will taking part change my child's normal therapy?
No. Your child will continue their usual therapy sessions. Depending on which NHS trust you attend, your therapist will either use the CHESS approach or continue with their standard support.
Do we have to travel to extra appointments?
No extra clinic visits are needed. All questionnaires can be filled out at home online or on paper at times that suit you.
What is a neurodisability?
It is an umbrella term for conditions linked to the brain and nervous system that can affect movement, speech, learning, or daily tasks, such as cerebral palsy or developmental delay.
How long will our family be involved in the study?
Your involvement lasts for around 12 months from the time you complete your first questionnaire.
What happens if we want to stop?
You can leave the study at any point. Deciding to stop will never affect the standard therapy or medical care your child receives.
How to find out more
Holly Keir
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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