Young people living with liver disease: a qualitative study of experiences of transitions

Abstract

Childhood liver disease is a rare chronic illness which up until a few decades ago had no known survivors. However, thanks to advances in medicine young people diagnosed with liver disease are now surviving into adulthood. To date, there has been very little research done in the United Kingdom exploring the impact of liver disease on young people’s lives and this thesis aimed to explore the impact of liver disease across different life transitions. In chapter 1, I provide an introduction to childhood liver disease. In chapter 2, I introduce liver disease within a historical context as having a stigmatising reputation due to the negative connotations associated with alcoholism. I explain Goffman’s (1963) Stigma theory and Bury’s (1982) concept of biographical disruption as useful tools for understanding experiences of health and illness. In chapter 3, I address the methodology used; a social-constructionist perspective, semi-structured interviews with twenty 14-17 year olds, twenty-one 18 – 26 year olds and twenty-one parents about their lives living with liver disease and the use of thematic analysis to analyse the data. In light of the transition from paediatric to adult services, Chapter 4 contributes towards the literature on health communication and stigma by demonstrating how young people can make the transition into a stigmatised space. Chapter 5 demonstrates the complex ways in which alcohol can be stigmatising for young people living with liver disease due to ambivalent societal attitudes and how experiences of some South Asian participants can differ. Chapter 6 contributes to the childhood literature on biographical disruption by demonstrating how liver disease disrupts various transitions young people make and how parents can experience vicarious biographical disruption. In the final chapter I reflect on the contributions my thesis has made to the literature on childhood liver disease.