Empowered transitions: Understanding the experience of transitioning from pediatric to adult care among adolescents with inflammatory bowel disease and their parents using photovoice

To identify barriers and facilitators of pediatric to adult transitions among adolescents with IBD and their parents. This cross-sectional study used photovoice to explore adolescent and parent perspectives on transitions in IBD care. Adolescents with IBD aged 14–23 and their parents were recruited from an urban IBD center during clinic visits. Participants completed a survey, took photos, participated in a semi-structured interview, and optionally participated in a focus group. Interviews were recorded and transcribed. Two analysts coded interview data for themes using MAXQDA software. Thirteen adolescents and eleven parents submitted photos and participated in an interview. The mean patient age was 19.0 ± 3.0. The mean parent age was 51.5 ± 5.4. Eleven (84.6%) adolescents were Caucasian; 12 (92.3%) privately insured; 4 (30.8%) in high school, 5 (38.4%) in college, and 4 (30.8%) in the workforce. Adolescent transition-readiness, resilience, and IBD-related self-efficacy scores were relatively high, with high agreement between patient self-report and parent-reported children's resilience; parents over-estimated their children's IBD-related self-efficacy. Participants discussed barriers to transitions including psychological distress, disease uncertainty, gut-brain axis-related issues, a lack of understanding by people unaffected by IBD, and frequent life disruptions. Facilitators of transitions included having a disease narrative, deliberately shifting responsibility for disease management tasks, positivity/optimism, social support, engagement with the IBD community, and mental health support. Attention to psychosocial issues is warranted during the transition process from pediatric to adult IBD care, specifically related to understanding the gut-brain axis and accessing resources to optimize mental health and well-being among transition-aged adolescents and their caregivers. [Display omitted] •Adolescents and parents used photographs to discuss IBD care transitions.•The psychosocial needs of patients and parents around transitions were explored.•Mental health, social, and community support emerged as transition facilitators.•Focus on the gut-brain axis emerged as a novel transition barrier for future study.