An e-program to support and empower parents of children with IBD

Parent and Child Sitting on a Carpet While Looking at a Laptop

To improve quality of life for children with IBD, it is essential to provide support to a critical member of their healthcare team: their parents.

Yet, accessible programs that assist parents in navigating their child’s journey are challenging to find – despite facing higher risks of anxiety, depression, and financial hardship.

“If a caregiver is under distress, they may struggle to navigate the healthcare system and their child’s at-home care, which could negatively impact their child’s health,” says Dr. Sara Ahola Kohut, pediatric psychologist in the IBD Centre at The Hospital for Sick Children (SickKids), and assistant professor of psychiatry at the University of Toronto.

With a grant from Crohn’s and Colitis Canada, Dr. Ahola Kohut is studying how a new online Acceptance and Commitment Training (ACT) workshop series – iACT-P – can reduce stress, improve mental health, and promote mindfulness among a group of 45 such parents. The workshops use cognitive behavioural therapy to change the way they relate to difficult thoughts and feelings.

“This approach teaches parents how to work with unwanted thoughts and feelings, which can enable them to respond flexibly to life in meaningful ways,” Dr. Ahola Kohut says.

She will analyze data before and after these sessions to see if parents feel tangible differences in their ability to cope. If the workshop proves to be effective, Dr. Ahola Kohut hopes to build a workshop manual for use at IBD centres around the world.

“Mental health support is not only helpful for the caregiver, but also has a trickle-down effect for the child,” she says. “Parents who care for themselves and model good coping skills will help support the development of these skills in their children.”

Dr. Ahola Kohut also received a Crohn’s and Colitis Canada research grant in 2017 for an online peer mentoring program that connected teens with IBD to young adult mentors who have experience managing their disease. Demonstrating the value of sharing lived experiences, the “iPeer2Peer” program acted as a catalyst for the iACT-P study, as the workshop series dedicates time to group discussions and for parents to ask each other questions.

Ultimately, Dr. Ahola Kohut hopes to fill an important gap in care by helping parents to better manage the stress, worries, or fears that are a part of being a parent, especially to a child with IBD.

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  • Canada has among the highest incidence rates of Crohn's and colitis in the world.
  • 1 in 140 Canadians lives with Crohn’s or colitis.
  • Families new to Canada are developing these diseases for the first time.
  • Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.
  • People are most commonly diagnosed before age 30.

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