New research into growing up with liver disease

Children's Liver Disease Foundation (CLDF), the UK's leading charity fighting childhood liver disease, is to fund a PhD student fellowship at Aston University, Birmingham UK,  which will examine young people's experience of living with liver disease throughout adolescence. The £61,000 award will fund the most comprehensive investigation of this area to date, providing evidence which will help ensure that health and information services can address the needs of this group and tailor their services appropriately.

 The three year study will be led by the University's Head of Sociology, Dr Pam Lowe, who commented: "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 the teenage years. At the moment we know very little about the experiences and needs of young people with liver disease. We are therefore delighted to have received funding from CLDF to carry out a qualitative investigation which will fill that gap."

Working with CLDF, Dr Lowe's team will carry out interviews with 20 young people (aged 14 – 18) 20 parents of young people with a liver disease and 20 young adults, 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.

Catherine Arkley, Chief Executive of CLDF commented: "Thirty years ago, many babies born with liver disease did not survive. Thankfully, due to developments in treatment of childhood liver disease in recent years - in which we have played a key role - more and more children are surviving to adulthood. One of the key areas of our work is helping young people to manage their liver condition in order to optimise their quality of life so we are delighted to be funding research which will broaden our understanding of such a crucial area and enable all organisations involved to better meet the needs of this group."