Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study

Brooke Allemang; Mira Browne; Melanie Barwick; Natasha Bollegala; Nancy Fu; Kate Lee; Ashleigh Miatello; Emily Dekker; Irina Nistor; Sara Ahola Kohut; Laurie Keefer; Samantha Micsinszki; Thomas D Walters; Anne M Griffiths; David R Mack; Sally Lawrence; Karen I Kroeker; Jacqueline de Guzman; Aalia Tausif; Pranshu Maini; Claudia Tersigni; Samantha J Anthony; Eric I Benchimol

doi:10.1016/j.jpeds.2024.114123

Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study

J Pediatr. 2024 Oct:273:114123. doi: 10.1016/j.jpeds.2024.114123. Epub 2024 May 28.

Authors

Brooke Allemang¹, Mira Browne², Melanie Barwick³, Natasha Bollegala⁴, Nancy Fu⁵, Kate Lee⁶, Ashleigh Miatello¹, Emily Dekker⁶, Irina Nistor⁷, Sara Ahola Kohut⁸, Laurie Keefer⁹, Samantha Micsinszki¹⁰, Thomas D Walters¹¹, Anne M Griffiths¹¹, David R Mack¹², Sally Lawrence¹³, Karen I Kroeker¹⁴, Jacqueline de Guzman⁶, Aalia Tausif⁶, Pranshu Maini¹⁵, Claudia Tersigni⁸, Samantha J Anthony¹⁶, Eric I Benchimol¹⁷

Affiliations

¹ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.
² Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Faculty of Health Sciences, McMaster University, Hamilton, Canada.
³ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Department of Psychiatry, University of Toronto, Toronto, Canada; Dalla Lana School of Public Health, University of Toronto, Toronto, Canada.
⁴ Division of Gastroenterology, Department of Medicine, Women's College Hospital, University of Toronto, Toronto, Canada.
⁵ Division of Gastroenterology, Department of Medicine, University of British Columbia, Vancouver, Canada.
⁶ Crohn's and Colitis Canada, Toronto, Canada.
⁷ Crohn's and Colitis Canada, Toronto, Canada; Division on Gastroenterology, Ambulatory IBD Clinic, Mount Sinai Hospital, Toronto, Canada.
⁸ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Division of Gastroenterology, Hepatology and Nutrition, SickKids Inflammatory Bowel Disease Centre, The Hospital for Sick Children, Toronto, Canada.
⁹ Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY.
¹⁰ CanChild Centre for Childhood Disability Research and the School of Rehabilitation Science, McMaster University, Hamilton, Canada.
¹¹ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Division of Gastroenterology, Hepatology and Nutrition, SickKids Inflammatory Bowel Disease Centre, The Hospital for Sick Children, Toronto, Canada; Department of Paediatrics and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.
¹² Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Eastern Ontario (CHEO) Inflammatory Bowel Disease Centre, CHEO, Ottawa, Canada; Department of Pediatrics, University of Ottawa, Ottawa, Canada.
¹³ Division of Gastroenterology, Hepatology and Nutrition, BC Children's Hospital, University of British Columbia, Vancouver, Canada.
¹⁴ Division of Gastroenterology, Department of Medicine, University of Alberta, Edmonton, Canada.
¹⁵ Faculty of Health Sciences, McMaster University, Hamilton, Canada.
¹⁶ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Canada.
¹⁷ Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Division of Gastroenterology, Hepatology and Nutrition, SickKids Inflammatory Bowel Disease Centre, The Hospital for Sick Children, Toronto, Canada; Department of Paediatrics and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada; ICES, Toronto, Canada. Electronic address: eric.benchimol@sickkids.ca.

PMID: 38815748
DOI: 10.1016/j.jpeds.2024.114123

Abstract

Objective: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention.

Study design: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis.

Results: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care.

Conclusions: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one's identity were identified and could be explored in clinical encounters.

Keywords: adolescents; inflammatory bowel disease; mental health; qualitative methods; transition to adult care; young adults.

Publication types

Randomized Controlled Trial

MeSH terms

Adolescent
Female
Humans
Inflammatory Bowel Diseases* / psychology
Inflammatory Bowel Diseases* / therapy
Male
Mental Health*
Qualitative Research*
Transition to Adult Care*
Young Adult