Thanks to funding from Crohn’s and Colitis Canada, a Canadian charity dedicated to finding cures for Crohn’s disease and ulcerative colitis, eleven Canadian professionals from across the country will research new treatments for the 270,000 Canadians living with Inflammatory Bowel Disease (IBD). One of these investigators is University of Toronto researcher and health psychologist Dr. Sara Ahola Kohut.
Kohut’s clinical practice at The Hospital for Sick Children involves providing support to kids, adolescents, young adults, and families who experience the various challenges associated with living with IBD. IBD encompasses Crohn’s disease, ulcerative colitis, or indeterminate colitis. According to Kohut, Crohn’s can be defined as “inflammation anywhere from the gum to the bum,” meaning the gastrointestinal tract, whereas colitis refers to the inflammation of the large intestine. Patients often work with gastroenterologists, nurses, and dieticians to manage symptoms such as abdominal pain, fatigue, and flare-ups of about ten to twelve bathroom trips a day of bloody diarrhea. As a health psychologist, Kohut aims to help patients manage these symptoms within their day-to-day lives. Her main goal with patients is to answer the question: “How do we live the best life possible given the circumstances of IBD?”
“I think being a teenager is confusing in the best of circumstances,” says Kohut. “But when you’re chronically unwell, that makes it doubly complicated.”
IBD patients often face challenges when preparing for appointments, dealing with pain, and communicating with family and peers about their illness. One solution she advises is to encourage children and adolescents to determine what is important to them. “I like to teach them how to use that as their North Star,” she says.
“I do also see lots of anxiety,” says Kohut. “And also, just kids who are finding themselves being pretty sad and even having depression. [However], I do try my very best to meet kids before they get to that level of clinical depression or clinical anxiety.”
Besides working with patients in her clinical practice, Dr. Kohut spends fifty percent of her time as a researcher. Her journey through academia began with a childhood fascination for resilience:
“When I was a little girl, people were reading Babysitter’s Club and I was reading first-person accounts of the Holocaust and the Underground Railroad,” says Kohut. “I was just so in awe of people who show resilience in the face of just horrendous things.”
Her awe and inspiration eventually translated into Kohut’s work in a medical setting. Her graduate and Ph.D. studies focused on pediatric pain in babies. During her residency year, Kohut was matched to The Hospital for Sick Children. “I truthfully sort of never looked back,” she remarks on her journey.
Kohut acknowledges that psychologists generally veer into the popular streams of either doing full-time research and teaching or becoming a full-time clinician. However, Kohut “wanted to have a little bit of everything.” While it was “by no means an A-B-C journey,” Kohut highly appreciates the many benefits of her unique position of being both a researcher and a clinician.
“Most of my best research ideas actually come from patients,” says Kohut. “They’re not my own. When the kids complain about something, if they complain enough then I know that I have to do something about it, and then I use my research time to try to develop that.”
Thus came the creation of Kohut’s “iPeer2Peer Program” which is also funded by Crohn’s and Colitis Canada. iPeer2Peer is an online peer-support program designed in response to several young patients who did not feel like they were meeting people who understood them. Teenagers with a chronic disease are matched with young adult mentors who have learned how to manage their disease and they discuss their experiences along with any helpful tips over Skype discussions.
The response to the program has led Kohut on a new research path. When parents came to Kohut praising iPeer2Peer, they also wanted to be included. Kohut started wondering about “how [they were] going to get parents engaged and be able to support parents when they’re quite busy.”
With the award of $50,000 from Crohn’s and Colitis Canada, Dr. Kohut can now search for answers to these questions. Kohut believes parents “are a critical member of the health care team,” in that “research has shown that when parents take care of their own stress levels and their own mental health, it improves their child’s health outcomes.” The grant will contribute to creating an online workshop series specifically for parents of kids with IBD, in the hope that parents can learn how to best support their child while also learning ways to manage their own mental health.
Receiving a research grant from Crohn’s and Colitis Canada feels “almost sweeter” for Kohut as “[she] can see that the tides are changing, so to speak, and people are recognizing the mental health piece.” From a research standpoint, Kohut appreciates the “live feedback from patients that shows me that my research is actually really helpful and [is] actually impacting the families directly.” Kohut says that the greatest reward, however, comes from working with families.
“When I see families and kids when they’re looking really well and healthy and they tell me about getting into school or getting into a play and just doing life and doing the things that are important to them, that’s number one.”