Enabling self-care in children with disabilities
Research type
Research Study
Full title
Enabling self-care in children with developmental disabilities: pre-protocol research for a cluster randomised trial
IRAS ID
253376
Contact name
N Kolehmainen
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Approximately 600,000 children in England have long term health conditions that affect the brain and/or nerves and muscles (neurodisability). Children with neurodisabilities and their parents tell us that self-care e.g. doing everyday tasks to look after themselves and making decisions about these tasks, is an important health outcome, but they also report significant difficulties developing self-care. Children with neurodisabilities often need occupational therapy, physiotherapy and speech and language therapy to help them develop self-care.
Research has shown that there are no evidence-based therapy interventions for children’s self-care. There is little evidence about interventions used in practice and no practice guidelines. As a result, the therapy interventions and advice that children and families receive varies.
The proposed research will investigate current therapy interventions to enable self-care for children with neurodisabilities aged 0 to 13 years and will generate evidence to inform a protocol for a future evaluation of self-care interventions.
Objectives
1. To specify ‘current practice’ for supporting children’s self-care
2. To identify the costs and benefits of self-care interventions to inform a future economic evaluation.
3. To investigate the willingness of therapy services and service-users to take part in a future trial and to be randomised.
4. To develop a trial protocol for a future evaluation trial of self-care interventions.Three studies will be completed in selected NHS sites in the UK. Study 1 (objectives 1 and 2) will comprise of interviews and observations related to therapy for self-care; study 2 (objective 3) a questionnaire study and study 3 (objective 4)co-production of a trial protocol. Service managers, therapists, children with neurodisabilities and their parents will be invited to participate in the study.
REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
19/NW/0521
Date of REC Opinion
8 Aug 2019
REC opinion
Favourable Opinion