The Parent Carer Empowerment Project
Research type
Research Study
Full title
Promoting the empowerment of parent carers of children with neurodisability in a UK healthcare context: A Qualitative Study and Intervention Development.
IRAS ID
331748
Contact name
James Reeder
Contact email
Sponsor organisation
University of Exeter
Duration of Study in the UK
2 years, 0 months, 5 days
Research summary
Neurodisability describes an impairment of the brain and/or its connections that limits an individual’s ability to do normal everyday activities. Over 700,000 children in the UK have a neurodisability, which can cause delayed development, restricted social participation and with poor educational, health and employment outcomes.
Improving health and social care for children with neurodisability and their families remains high on the national agenda. It has been prioritised in UK legislation, NHS policy and by national research priority setting partnerships.
Previous research tells us that when parent carers are supported to take control of the decisions and actions surrounding their child’s care, there are measurable health and social benefits for them and for their child. The World Health Organisation call this process ‘empowerment’.
During this project we are working in partnership with parent carers, health professionals and NHS managers/commissioners within a single NHS Trust. The aim is to develop and test a new intervention to improve empowerment of parent carers of children with neurodisability.
We will do this by first consulting with all stakeholders. This will help us find out what parent carer empowerment means to those it involves and importantly what they perceive as barriers to successful empowerment. This will be achieved using focus-groups, interviews and questionnaires.
We will then use this information to guide the development of our intervention. This will be carried out over two half-day workshops involving all relevant stakeholders.
Once we have designed our intervention, we will carry out some tests to find out if it can be practically delivered. This will involve gathering information about the resources and infrastructure required to deliver the intervention, before delivering the intervention to a small group of people in order to find out if it is acceptable and useful to those it involves.REC name
East of England - Cambridge South Research Ethics Committee
REC reference
24/EE/0020
Date of REC Opinion
8 Feb 2024
REC opinion
Further Information Favourable Opinion