Parents' support needs during the transition to adult health services
Research type
Research Study
Full title
The experiences of parent-carers of young people with profound and multiple learning disabilities at the transition from paediatric services to adult health care services
IRAS ID
250305
Contact name
Rachel Shaw
Contact email
Sponsor organisation
Aston University
Duration of Study in the UK
4 years, 9 months, 31 days
Research summary
What are the experiences of parent-carers of young people with profound and multiple learning difficulties at transition from paediatric services to adult healthcare services?
More children with profound and multiple learning disabilities are surviving into adulthood. This transition to adult services presents challenges for parent-carers, who become the coordinators of their children’s care when paediatric services end. Current research focuses on young people with chronic health conditions; there is little research into healthcare transition for those with intellectual disabilities.
Parent-carers of children with disabilities suffer both stress-related illnesses and physical exhaustion. The Care Act 2014 recognises the needs of both carers and those they care for, increasing their rights to support, whilst the Government’s Carers’ Action Plan 2018-20 calls for further research into caring.
The proposed research will explore the parental experience of a young person's transition from paediatric to adult healthcare, in order to understand how parents can be best supported by professionals. It comprises of four studies.
Study 1 is series of three interviews, where the researcher (KS) will be interviewed by a senior researcher to examine her experiences and beliefs around the topic. These 'bracketing' interviews will be undertaken at Aston or Bournemouth University.
Study 2 is a qualitative exploration of the parental experience of transition over time. 5-7 parent-carers, recruited through children’s hospices, will be interviewed twice during their journey through transition. Visual research methods will be used to generate textual data, which will be analysed qualitatively. Participants will be in the study for approximately one year.
Studies 3 & 4 are qualitative interview studies with health and social care professionals in paediatric services (Study 3) and adult healthcare (Study 4) to explore their understanding of parental support needs. Recruitment will be through a number of sites across a West Midlands local authority. Participants will undergo a one-off semi-structured interview.REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
19/WM/0011
Date of REC Opinion
20 Feb 2019
REC opinion
Further Information Favourable Opinion