Challenges and strategies of children and adolescents with inflammatory bowel disease: a qualitative examination

BACKGROUND: The aims of this study were to understand the lived experience and elements of quality of life as depicted by children and adolescents with inflammatory bowel disease (IBD). METHODS: Eighty participants with IBD, ranging in age from 7 to 19 years, were interviewed about the impact of IBD on their daily lives. RESULTS: Findings demonstrated that IBD profoundly affects children and adolescents. These young patients experience concerns and discomfort as a result of IBD symptoms and treatments. They commonly feel, in varying degrees, a sense of vulnerability and diminished control over their lives and future, and perceive themselves as "different" from healthy peers and siblings. Despite these negative impacts, participants also described effective means of coping with IBD, and reported that support from family members and friends contributes to coping. A positive attitude and other strategies were also described as strengths contributing to quality of life. CONCLUSION: Clinical assessments need to consider the experiences and perceptions of children as they manage their IBD. Implications for clinical practice are discussed.