Family Based Support with parents and family carers
Research type
Research Study
Full title
Family based support to build capability and resilience in parents/family carers of adults with learning disabilities and challenging behaviours: collaborative research
IRAS ID
189428
Contact name
Tina Cook
Contact email
Sponsor organisation
Northumberland, Tyne & Wear NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Existing research highlights the physical and psychological impact of caring for someone with learning disability and behaviour that challenges. Established interventions focus on supporting parents of children. Caring for an adult presents ongoing and additional challenges that can cause chronic stress. We know of no evidenced based interventions available for family carers once their child reaches adulthood. The aim of this research is to identify the basis of a successful intervention programme (a course) that supports the capabilities and resilience of those caring for an adult with learning disability and behaviour that challenges in order to design a protocol for an effective intervention that meets the needs of parents and family carers. The focus of the intervention is Positive Behaviour Support with Acceptance and Commitment Therapy and Mindfulness. Parents/family carers have been involved in the development of both the intervention and research design. Three parents are members of the research team.
The five session course will take place three times with different sets of family carers. Learning from each course will feed into the next one. A conversational research approach using interviews and focus groups at various points in the course will be implemented. All parent/family carers participating in the research will be directly involved providing feedback on the principles of a successful intervention building knowledge and evidence upon which to develop a final intervention protocol.
The research team (parents, clinicians and academics) are linked locally, regionally and nationally to a range of bodies and committees including the Challenging Behaviour National Strategy Group, The National Valuing Families Forum and the NICE Guidelines Development Group for Challenging Behaviour in Learning Disability. Findings will be disseminated through these channels and through conference presentations, academic papers and publications designed to reach family carers and the range of people who support those with caring responsibilities.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
16/EE/0194
Date of REC Opinion
21 May 2016
REC opinion
Further Information Favourable Opinion