Those living with Crohn’s or colitis face daily, complex mental and emotional challenges that make it hard for them to manage their disease. It is even more difficult for young people because these diseases disrupt their social and emotional development. They face such challenges even at the onset of symptoms, as the process to identify and find effective treatments can be long, difficult and stressful.
Unfortunately, the number of diagnoses is growing every year, currently more than 11,000 annually, or 1 every 48 minutes, with the typical age of diagnosis being during the teenage and young adult years. Further, the number of new diagnoses is rising most rapidly in children under the age of six years old.
Dr. Sara Ahola Kohut, a clinical psychologist who also teaches and carries out research at the Inflammatory Bowel Disease (IBD) Centre at the Hospital for Sick Children in Toronto, is addressing these challenges through two innovative research projects, both funded by Crohn’s and Colitis Canada.
The first – Internet Delivered Acceptance Commitment Therapy for Parents of Children with IBD (iACT-P) – is a series of workshops that helps parents develop coping strategies. They are provided resources, educational content and a connection to other parents through a peer support community.
Participants value the relationship with other parents going through the same thing. One said:
“Connecting with other parents who understand our journey has been incredibly comforting.”
The second project - iPeer2Peer Program for adolescents with IBD - developed the iPeer2Peer program, which pairs young people with trained mentors who live with Crohn’s or colitis. The mentors offer personalized guidance and support, aiming to improve coping and self-management skills, as well as help young people follow their treatment plan. Watch a video of a mentor and mentee explaining how the program works.
Youth participants report increased confidence and resilience, with one saying:
“Having a mentor to lean on has not only improved my ability to manage my condition but has also lifted my spirits during tough times.”
These projects underline the importance of peer support to help deal with the daily challenges of living with a chronic disease. Participants reported a deeper understanding of their condition, improved disease management, and enhanced resilience. One participant shared:
“Thanks to my mentor, I’ve developed a deeper understanding of my condition and the confidence to advocate for my needs.”