Transition passports for young people with liver conditions
Research type
Research Study
Full title
Exploration of patient views in the development of an individualised transition passport to support communication and self-management in young people with liver disease or a liver transplant
IRAS ID
150757
Contact name
Heather Buchanan
Contact email
Sponsor organisation
University of Nottingham
Research summary
For young people with liver disease or a liver transplant, transition from paediatric to adult services can be a vulnerable time, often made more difficult by poor disease knowledge and self-management skills and difficulties communicating with new adult care providers. There is a need to develop interventions to support the acquisition of self-management skills to help young people to engage with adult services and better equip them for adult care. Transition passports are an aid to improve patients’ knowledge about their health and to provide a sense of ownership over their condition and medical history. A passport can be a useful communication aid for young people and provide them with the framework to communicate their medical history to new clinicians. Providing young people with a tool which has been designed to facilitate communication of their medical record may also help to increase patient confidence in initial meetings with clinicians and thus help rapport building in the consultation process and build skills of self-management. In order to design a transition passport which supports the development of self management skills and communication, the next and vital step in this process is to involve young people to ascertain and explore their views about this resource as a potential tool to assist them when in the process of transition from paediatric to adult services in order to develop a tool which is useable and tailored to their needs. Young people will be asked to take part in focus groups to elicit their views about transition passports; the extent to which they would find them helpful/unhelpful, the format they might take and the ways in which they can support self-management. These focus groups will be digitally recorded, transcribed and analysed using a thematic framework.
REC name
East of Scotland Research Ethics Service REC 1
REC reference
14/ES/1032
Date of REC Opinion
15 Jul 2014
REC opinion
Further Information Favourable Opinion