Supporting young people to become independent at managing their CKD v1
Research type
Research Study
Full title
Preliminary co-design, development and evaluation of a self-management action plan: Supporting parent-to-child transfer of responsibility for chronic kidney disease (CKD)
IRAS ID
226365
Contact name
Ruth Nightingale
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Developing independence and autonomy can be challenging for young people, particularly if they have a long-term condition (LTC). As they get older, they are expected to:
• understand and manage their condition
• follow complicated treatment routines, and
• take on more responsibility for looking after their health, including getting involved in making decisions.Health-care professionals (HCPs) can encourage young people to begin taking charge of their healthcare and parents to begin ‘letting go’ but there is limited evidence about how families can best be supported with this process.
This study will focus on young people who have chronic kidney disease (CKD), a LTC which is potentially lifelimiting. CKD involves complicated home-treatment which can include: taking medication, monitoring fluid/diet and home dialysis. Young people with CKD, their parents and the HCPs who work in kidney teams (such as doctors, nurses, social workers, dieticians, clinical psychologists and pharmacists) will be invited to take part in the study.
The study is in two parts:
1. Interviews with young people with CKD, their parents and HCPs, from different professions, who work with the family. The aim of the interviews is to find out how young people learn to take control of their CKD, how parents 'let go' and what supports families as their roles and responsibilities change.
2. Three separate focus groups (one with young people, one with parents and one with HCPs) and/or interviews to start developing a resource to help families with the handover of responsibility for CKD from parents to their child.REC name
Yorkshire & The Humber - Sheffield Research Ethics Committee
REC reference
18/YH/0210
Date of REC Opinion
31 May 2018
REC opinion
Favourable Opinion