Transitioning healthcare management from parents to young people
Research type
Research Study
Full title
Developing an intervention to facilitate the transition of disease and healthcare management from parents to young people with long term medical conditions: Eliciting the views of patients, parents and staff
IRAS ID
186585
Contact name
Gemma Heath
Contact email
Sponsor organisation
Aston University
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
Advances in treatment and technology mean that young people with long term medical conditions (LTCs) are now more likely than ever to reach adulthood. The process of transitioning to adulthood and adult services however, necessitates changes in the allocation of responsibility for disease and healthcare management from parents to young people and hence, changes to the behaviour of different family members; young people are required to increase their skills and responsibility for self-management, while parents have to reduce their input, supporting their child in their journey towards independence. This time of change frequently results in poor health outcomes for young people, linked to decreased treatment adherence and poor health service engagement. To address this, we are designing an intervention which uses existing evidence and psychological theory to help young people to develop the skills, motivation and confidence they need to effectively manage their own LTC and to support parents’ adaptation to their new and evolving role. This intervention will be non-condition specific, enabling application across a variety of LTCs that require self-management and self-advocacy skills. It will also recognise that parents, as well as adolescents and young adults (AYAs) undergo a transition process, management of which can impact on the behaviours and subsequent health outcomes of their children.
Having developed our theoretical understanding of the likely processes of change for this intervention, we now seek to elicit the views of stakeholders (young people, parents and professionals) through interviews (with young people and parents) and focus groups (with health professionals) to test our formulation and to translate it into practical intervention sessions that will be acceptable and engaging for service-users.REC name
South Central - Hampshire A Research Ethics Committee
REC reference
15/SC/0530
Date of REC Opinion
15 Sep 2015
REC opinion
Further Information Favourable Opinion