Young People Living with Liver Disease
Research type
Research Study
Full title
Young People Living with Liver Disease: A qualitative study of experiences of transitions
IRAS ID
131562
Contact name
Pam Lowe
Contact email
Sponsor organisation
Aston University
Research summary
There is very little research exploring the lives of young people living with liver disease. Previous research on young people’s experiences of other chronic illnesses have shown that this can be a difficult period. Adolescence is a period of change and young people have more responsibility for their condition as they gain independence. Young people undergo many transitions such as the transition to adulthood, into employment and the transition from child to adult health services which could have potentially adverse health outcomes if not managed properly.
This study aims to explore the lives of 20 young people (14 – 17 years), 20 young adults (18 – 25 years) diagnosed before the age of 18, and 20 parents’ experiences of living with liver disease through in-depth, semi-structured qualitative interviews lasting approximately 60 minutes.
Participants will be recruited from UK hospitals which provide care for people with liver disease or via The Children's Liver Disease Foundation. Participants will be handed an information pack about the study and will contact the research team if they are interested in taking part in the study
Discourse analysis will be used to identify patterns of experiences, attitudes and behaviours and also analyse the accounts in terms of their construction and function. Coding and analysis will be undertaken throughout the period of data collection so that analysis of early interviews informs the development of the interview schedule for later interviews.
The interviews will broadly cover the following topics; illness journey (background of diagnosis and treatment), managing (coping with the condition, adherence to treatment), living with the illness (impact on wider social life), transitions (growing into adulthood), health services (relationships with health professionals, transitions and changes in health services provision) and difficulties (unmet needs).
The findings will highlight the issues most pertinent to each participant group during the transition process. The outcomes of this study may inform health professionals and information services in providing tailored, age-appropriate support and care.
REC name
London - Brent Research Ethics Committee
REC reference
13/LO/1483
Date of REC Opinion
15 Oct 2013
REC opinion
Further Information Favourable Opinion