Child and Family Perspectives on Adjustment to and Coping With Pediatric Inflammatory Bowel Disease

Objectives: Children with inflammatory bowel disease (IBD) are at increased risk for poor mental health. The etiology of this risk is not clear, though may be related to the disease, its treatment, and/or the experience of these. We sought to describe the challenges that children with IBD and their families face in living with a chronic condition and undergoing repeated intravenous infusions; and identify coping mechanisms to understand how medical systems may support resilience. Methods: Semistructured qualitative interviews with 18 patient‐guardian dyads at a tertiary outpatient infusion center, explored feelings related to IBD, the infusion process, and coping. Interviews were recorded, transcribed, and analyzed in ATLAS.ti. Two coders identified themes; developed a codebook and coded transcripts using the constant comparative method; and described themes/patterns. Results: Participants identified challenges related to IBD (unpredictable nature, disrupted normalcy, treatment decisions, managing relationships, life transitions) and a subset of challenges related to the infusion procedure (anxiety of unknown, managing pain/anxiety during IV placement, logistics). Participants coped through social support, cognitive strategies (positive attitude) and/or behavioral strategies for managing emotions (preparation for intravenous [IV] placement), and confidence in the medical care. By employing these coping strategies, participants came to accept IBD, adapt to the “new norm,” and learned life lessons and resilience. Conclusions: To support coping, clinical teams might provide anticipatory guidance to decrease anxiety of the unknown and identify cognitive‐behavioral strategies for managing emotions. Delivery systems that build relationships, maintain normalcy, and consider needs of the family may further facilitate coping.