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

Abstract

Objective: To identify barriers and facilitators of pediatric to adult transitions among adolescents with IBD and their parents.

Methods: 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.

Results: 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.

Conclusion: 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.

Keywords: Adolescents; Gut-brain axis; Inflammatory bowel disease; Parents; Transitions.

Fig. 1.

One parent’s response to the prompt: “What does your child’s IBD mean to you?”

Fig. 2.

One participant’s response to the prompt: “What are your goals for the future?”

Fig. 3.

One parent’s response to the prompt: “What does your child’s IBD mean to you?”

Fig. 4.

One participant’s response to the prompt: “What does your IBD mean to you?”