“She just wants to be a normal kid”: Adolescents with inflammatory bowel disease and their caregivers' transition from paediatric to adult care

OBJECTIVES: Adolescents with inflammatory bowel disease (IBD) experience disruptions to normal adolescent development. Lack of preparation for transition from paediatric to adult care can have negative biopsychosocial outcomes. We aimed to explore adolescents' perspectives on how IBD affects their lives. Additionally, we aimed to understand adolescents and their parents' views on transition from paediatric to adult IBD care. DESIGN: Qualitative study. Adolescents and parents participated in semi-structured interviews together. METHODS: Participants included eight adolescents with IBD (four females; four with Crohn's disease, two with ulcerative colitis and two with IBD-U; mean age = 16) and their parent(s) (n = 9). Data were analyzed using template thematic analysis. RESULTS: Three themes were identified that reflected how IBD conflicts with typical adolescent development because of the need for careful planning to manage the disease and its symptoms (e.g., loss of bowel control, fatigue). They also described the active role parents currently play in managing their child's IBD, from managing medication to organizing appointments and communicating with healthcare professionals. Anxiety and apprehension of adolescent participants towards transitioning from adolescent to adult care were also captured. CONCLUSIONS: Healthcare providers and carers must work together with adolescents with IBD to ensure they are ready for adult care, where they will need to take sole responsibility for managing their chronic condition.