Living with ulcerative colitis: experiences of adolescents and young adults

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Abstract
The problems associated with ulcerative colitis and its treatment have effects on adolescents and young adults dissimilar from as well as more profound than those on older individuals. Adolescents are confronted with problems such as biological, psychological and social changes as well as role changes related to peers and family. This inductive study aimed to describe the adolescents' experiences of living with ulcerative colitis. A total of 28 subjects were asked about their experiences both at the present time and at the time their first symptoms appeared. Verbatim transcribed thematized interviews were analysed according to a method influenced by the constant comparative method for grounded theory. Eight categories were grounded in the data, forming a model which describes the process from onset of disease to present time. The main variable identified was: reduced living space, a strategy to manage the new situation. Dependent on the reactions received from significant others, the outcome for the adolescents hovered between feelings of self-confidence and lack of self-confidence. If the adolescents experienced support, the living space was expanded again. The results might be of great value when caring for and assisting young persons with a chronic disease in general, and in particular when taking care of adolescents with a recently diagnosed inflammatory bowel disease.
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