Dr Pam Lowe from Aston University and Professor Elizabeth Peel from University of Worcester are leading a research project to find out more about the lives of young people living with liver disease.
Adolescence is a period of transition for every young person. In the case of young people with a liver disease, they are starting to take responsibility for managing their condition, and having to move from the provision of child health services to adult services alongside all the everyday challenges of teenage years. Traditionally the impact of health conditions on children and young people were sought from adults around them (such as parents who managed their medicated regimes). However it has been increasingly recognised that if health outcomes are to be improved, young people’s own understandings of chronic conditions must be taken seriously. At the moment we know very little about the experiences and needs of young people with liver disease.
Shahreen Bashir, the project researcher will be carrying out interviews with 20 young people (aged 14 – 17 years), 20 parents of young people with a liver disease and 20 young adults (18 – 25 years). You may meet her at adolescent clinics taking place in Leeds and Birmingham over the next few months. The interviews may be carried out face-to-face, over the telephone or Skype. In order to take part in the study you must have been diagnosed with liver disease before the age of 18 years.
The interviews will be encompassing a range of topics including the background to their diagnosis and treatment, how they have coped with their condition, whether they have adhered to treatment, the impact on their wider social life, their relationships with health professionals and difficulties they have encountered.
If you would like more information on the project please contact Shahreen Bashir by emailing firstname.lastname@example.org.