Parent Carer Empowerment Project

Promoting the empowerment of Parent Carers of children with neurodisability in a UK healthcare context.

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 have influence and control over 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 from the Family Faculty and with health professionals and NHS managers/commissioners.  The aim is to develop and test a new intervention to improve empowerment of parent carers of children with neurodisability.

The first stage of this project will involve 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.

Funding:

This project is part of doctoral research funded by the National Institute of Health Research (NHIR) as part of a Doctoral Clinical and Practitioner Academic Fellowship awarded to Jim Reeder (NIHR302886).

Please contact Jim Reeder for further information jr898@exeter.ac.uk

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