Transitioning to Adult Healthcare
Research type
Research Study
Full title
Transitioning to Adult Healthcare: Understanding the current practice of transitional care for young people with epilepsy and a co-morbid learning disability.
IRAS ID
149654
Contact name
Ciara Kierans
Contact email
Sponsor organisation
University of Liverpool
Research summary
Transition is the planned and purposeful movement of adolescents with a chronic health condition into adult services. It aims to promote independence and self-management in healthcare. Transitional care is recognised as an essential consideration for quality health care provision and a key area for significant improvement. Of particular concern is the transition of young people with complex chronic conditions, such as epilepsy. There is evidence that young people with learning disabilities (a co-morbidity often found in epilepsy) face considerable difficulties during transition from the familiar child healthcare setting to an adult healthcare service. Since young people who have Epilepsy and a co-morbid Learning Disability [henceforth referred to as ELD] may not always reach complete independence from their carers, questions remain about whether the aims of transitional care are sufficient to the needs of those with ELD.
Individuals with a diagnosis of ELD are known to have higher rates of inadequate seizure control leading to increased rates of morbidity and mortality. As a result, questions arise about the applicability of the traditional concept of transition, with its emphasis on independence, in meeting the needs of individuals with ELD during transition.
This study will explore the meanings and practices attached to transitional care for those with ELD. Participants will include young people with ELD, their immediate carers and health professionals involved in transitional care. An ethnographic case study approach will be used, to identify the familial, social and institutional contexts in which transitional care is experienced. Data will be collected through interviews and observations. The aims of the research are to (1) facilitate an understanding of transitional care as a complex practice that extends into the everyday life of patients and their families and (2) to inform health policy initiatives both locally and nationally about issues related to best practice and patient experience. This project is funded by Epilepsy Action.
REC name
North West - Haydock Research Ethics Committee
REC reference
14/NW/1162
Date of REC Opinion
18 Aug 2014
REC opinion
Favourable Opinion