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.

Child and Parent Perspectives on the Acceptability of Virtual Reality to Mitigate Medical Trauma in an Infusion Center.

INTRODUCTION: Children may experience medical trauma when undergoing medical procedures even when procedures are minor. While virtual reality (VR) is effective for managing procedural pain and anxiety, few studies address how families feel about using VR. We explore pediatric patient and guardian views regarding the acceptability of using VR during procedures to mitigate medical trauma. METHODS: Semi-structured qualitative interviews with 18 patient-guardian dyads at a tertiary outpatient infusion center for inflammatory bowel disease (IBD) treatment. Interviews explored how VR may change the infusion experience, including benefits, risks, and recommendations for clinical integration. Interviews were recorded, transcribed, and analyzed in ATLAS.ti. Two coders used a 3-step coding approach to: (1) identify themes; (2) develop a codebook and code transcripts using the constant comparative method; and (3) describe themes/patterns. RESULTS: Potential benefits of VR were distraction from infusion-related anxiety and pain and generating excitement for the appointment. Potential challenges were VR-side effects (dizziness, nausea), limited mobility during the procedure, disorientation/immersion leading to shock upon IV-placement, and a lost opportunity to build coping skills. Families queried when VR should first be introduced and when during the appointment use would be optimal. Parents expressed concerns about pushing VR when their child was already under stress. A limited number of families doubted the utility of VR. CONCLUSIONS: Patients and parents found VR to be an acceptable option for helping to manage medical trauma during infusions but highlighted that the VR experience must be carefully crafted to avoid unintended consequences, including lost opportunities to build resilience.