CHESS
Research type
Research Study
Full title
Investigating the clinical and cost-effectiveness of CHildren’s Early Self-care Support in children with neurodisability: the CHESS cluster randomised controlled trial.
IRAS ID
331267
Contact name
Niina Kolehmainen
Contact email
Sponsor organisation
Sheffield Children’s NHS Foundation Trust
ISRCTN Number
ISRCTN68119953
Duration of Study in the UK
4 years, 0 months, 1 days
Research summary
Self-care means developing skills and independence in everyday activities, like using the toilet, having a bath, getting dressed. It also means getting involved in activities by making choices, joining in with routines, and coping with problems.
Neurodisability describes a range of long-term conditions that affect movement, learning, hearing, vision, communication, emotion, and/or behaviour. It includes cerebral palsy, autism, and learning disabilities. Neurodisability affects over 500,000 UK children.
For children with neurodisability and their parents, self-care is a major priority for health, wellbeing, and living an ordinary and fulfilled life. Most children with neurodisability need self-care support from therapists in the NHS and social care.
CHESS is a new way to support self-care of young children with neurodisability between age 12 months and starting school. CHESS includes materials that therapists use to help families identify and communicate their self-care priorities, nurture helpful and enjoyable self-care routines, overcome barriers, and develop children’s independence through movement skills. CHESS includes training for therapists and online resources for therapists and families.
We will investigate whether CHESS is better than usual self-care support provided by therapists and can save the NHS money.
We will ask around 40 NHS services and 960 parents to join our study. Social care and voluntary sector therapy services that usually provide self-care support will also be involved. Half the services will provide CHESS and half will provide their usual self-care support. We will measure children’s self-care, health, and quality of life, and parents’ health and wellbeing. We will also measure how much parents and services spend on accessing and providing support. To help the study run smoothly and explore people's experiences of CHESS, we will do interviews and focus groups with parents and therapists in some services. We will closely monitor whether CHESS has any potential harms for children or parents.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
24/NE/0162
Date of REC Opinion
31 Oct 2024
REC opinion
Further Information Favourable Opinion