Young People Learning to Live With Inflammatory Bowel Disease

Abstract

In a longitudinal study we investigated how young people come to live with a chronic disease, and asked them to record an audio diary on a regular basis. We also interviewed each participant every 6 weeks. Our analysis focused within and across the diary sets of 6 young people diagnosed with inflammatory bowel disease. All were aged between 11 and 16 years, and their recordings provided an insight into the experience of living within and beyond disease, and of negotiating health in the context of adolescence. This data collection method, which became known as the unclosed diary, was well received by the young people, who made use of their diaries in different ways. Three key aspects of their diary use, immediacy and intimacy, conversation, and reflection, demonstrate the flexibility of the method both as a means of accessing young people’s lives at a time of change and development, and as a personal resource for the participants.