Disease-Related Worries in Persons With Crohn Disease

Crohn disease, a chronic inflammatory bowel disease, affects everyday life, impairs quality of life, and creates worries. This study explored disease-related worries in persons with Crohn disease to gain deeper insight into how this worry is experienced and handled. Eight women and 4 men with Crohn disease who reported their disease-related worries as high or very high in a questionnaire were interviewed. The interviews were evaluated by qualitative content analysis, generating 3 categories: worries about the disease itself; feelings related to the worries; and management of the worries. The unpredictable course of the disease, impaired function due to fatigue, and lack of bowel control were the most prominent causes of worry. The worries created feelings of stress, guilt, and frustration. The participants expressed a need to talk about their worries, to make them visible and recognized, and to be understood. The participants found individual ways to handle the worries. Actively gaining control by changing focus, performing relaxation exercises, and seeking information were important self-care strategies. In addition, a strong and partially unmet need for expressing and venting concerns to one's caregiver was identified.