TY - JOUR
T1 - Empowered transitions
T2 - Understanding the experience of transitioning from pediatric to adult care among adolescents with inflammatory bowel disease and their parents using photovoice
AU - Feingold, Jordyn H.
AU - Kaye-Kauderer, Halley
AU - Mendiolaza, Michelle
AU - Dubinsky, Marla C.
AU - Keefer, Laurie
AU - Gorbenko, Ksenia
N1 - Funding Information:
The authors, JF, HKK, MM, and KG have no conflict of interest to report. LK is a consultant to Abbvie and Pfizer. MCD receives grant support from Abbvie and Pfizer. MCD and LK are co-founders and equity shareholders for Trellus Health.
Funding Information:
The authors would like to thank the gastroenterologists in The Susan and Leonard Feinstein Mount Sinai Inflammatory Bowel Disease Center who collaborated with the research team to help with recruitment for the study. This work was supposed by a Medical Student Research Award from the American College of Gastroenterology (ACG) granted to JF. The funding source has no role in the study design, data collection, analysis, or interpretation of data.
Publisher Copyright:
© 2021 Elsevier Inc.
PY - 2021/4
Y1 - 2021/4
N2 - 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.
AB - 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.
KW - Adolescents
KW - Gut-brain axis
KW - Inflammatory bowel disease
KW - Parents
KW - Transitions
UR - http://www.scopus.com/inward/record.url?scp=85101138232&partnerID=8YFLogxK
U2 - 10.1016/j.jpsychores.2021.110400
DO - 10.1016/j.jpsychores.2021.110400
M3 - Article
C2 - 33631616
AN - SCOPUS:85101138232
SN - 0022-3999
VL - 143
JO - Journal of Psychosomatic Research
JF - Journal of Psychosomatic Research
M1 - 110400
ER -