Shared decision-making in young people with long-term conditions
Research type
Research Study
Full title
The development of an intervention aimed at addressing the perceived barriers to and facilitators of the participation of adolescents with long-term conditions in shared decision making about their healthcare.
IRAS ID
232192
Contact name
Amber F G Jordan
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
1 years, 7 months, 0 days
Research summary
Shared decision-making (SDM), which is actively supported by NHS bodies and patient organisations, has been found to improve patient knowledge and reduce decisional conflict in paediatric patients. In this study, we are aiming to develop an intervention which prepare/support adolescent involvement in SDM. We will do this by first exploring the adolescents’ perceptions of barriers and facilitators to involvement, using qualitative methods. The findings will inform the development of the intervention, which will be user tested to obtain optimum acceptability. The study will involve 2 phases.
For phase one, participants will be eligible if they are between 12 and 19 years of age, and have been living with a long-term condition for at least a year. They will be identified either by specialists or community workers. The principle site will be University Hospital Wales in Cardiff, which will be responsible for participant identification only. Participant involvement will consist of an interview, approximately one hour long. In the interview we will use participatory techniques, including completing timelines, pie charts to engage the participants. These techniques have been found to address issues of power imbalance between the young participants and researchers. We will ask the participants to speak about previous consultations with health professionals, and to what extent their experiences met their preferences. I will then ask questions which explore why participants may or may not participate during consultations. The interviews will take place at a time and place of convenience for the participants.
Phase 2 patient inclusion criteria will be similar to phase 1, and will also include health professionals that work with adolescents with long-term conditions. Interviews will last maximum 1 hour. Participants will be asked to provide feedback on each item of the intervention, and give suggestions for improvements.REC name
London - London Bridge Research Ethics Committee
REC reference
17/LO/1694
Date of REC Opinion
2 Nov 2017
REC opinion
Further Information Favourable Opinion