Swedish Children's Lived Experience of Ulcerative Colitis

Inflammatory bowel disease (IBD) is increasing in children. When this lifelong illness is diagnosed in childhood, especially during adolescence, it may have a negative impact on children's quality of life. The aim of the present study was to illuminate the meaning of children's lived experience of ulcerative colitis. Seven children aged between 10 and 18 years were recruited from University Hospital South Sweden and interviewed about the phenomenon under scrutiny. Data were analyzed by means of a phenomenological hermeneutical method. The meaning of the children's lived experience of ulcerative colitis was summed up as a main theme. A daily struggle to adapt and be perceived as normal consisted of 4 subthemes: being healthy despite the symptoms, being healthy despite being afraid, being healthy despite a sense of being different, and being healthy despite needing support. The children strove to perceive themselves as healthy, and they needed to be perceived as healthy, especially when experiencing symptoms of inflammatory bowel disease. Children with inflammatory bowel disease confront various problems, such as ambitions and goals that are hard to achieve, due to reduced abilities as a result of the illness or an insufficiently adapted environment.