Investigating how young people learn to live with inflammatory bowel disease

Inflammatory Bowel Disease (IBD) is the medical term for two chronic conditions; ulcerative colitis and Crohn's disease. It affects approximately 180,000 people in the UK, and the incidence of Crohn's disease in children and young people has increased during the last 10 years. Research into IBD mainly concentrates on treatments and causes, with a smaller proportion of studies addressing psychosocial issues. Much of the existing research is disease focussed, and neglects to inform us of how young people live their daily lives with IBD. This research fills this gap, and takes the step of following a group of young people with IBD over an extended time. The first part of data collection was an interview study with adults aged between 20 and 25 years. All had a minimum of five years experience of IBD, and were diagnosed before age 18. The interviews used a life story format, and addressed concerns of the public and private nature of illness experience, perceptions of the body, relationships with family and friends, changing living space, and problems with disclosing illness. These outcomes raised questions about what it means to live "beyond" illness. The interview study informed the next part of data collection, an audio diary intervention study with a cohort of young people. This comprised six participants aged between 11 and 16 years at the time of recruitment into the study. All were diagnosed with IBD up to a maximum of 18 months prior to being approached to take part. They were each given a digital recorder and encouraged to record aspects of their lives that were of importance to them. These did not have to be disease related. The total period of the diary production lasted 48 weeks, Each participant was interviewed first, and then had a follow-up interview every six weeks in diary sets. This exercise was called an "unclosed diary", to reflect the emergent, flexible nature of documenting information usually disclosed in a private, autobiographical journal. Data was analysed in terms of how much IBD featured in individual lives and how participants positioned themselves in their accounts. The data from both studies revealed that IBD was not a catalyst for all decisions and events that shaped the lives of young participants. There are aspects of IBD experience that are aligned to existing literature, in terms of bodily perception and restricted living space through fear of faecal incontinence. However there are other stories of everyday activity that show that IBD is not a prominent force in a young person's life. Methodologically, this is a study that emphasises that living with a chronic illness like IBD involves a significant period of time when illness is absent. Living beyond illness is not limited to doing activities in spite of IBD, but is a concept that is dependent on how young people position themselves and how others position them