Connecting Parents

New peer support group for pediatric caregivers launches in January

by Heidi Westfield “We can help each other navigate through this.”

Being the parent of a child living with kidney disease can be stressful, overwhelming and at times lonely. Sara Shrubsall understands just how difficult it can be.

q Sara and Keanna S ara’s daughter Keanna started having health problems when she was just six years old, and by the age of eight was on dialysis. She lives with a rare kidney disease that doesn’t always respond to transplant surgery. Keanna’s second kidney transplant is working, but her donor kidney is damaged due to a persistent virus. The kidney is now functioning at about 20 percent.

Sara has years of experience juggling hospital visits, doctors’ appointments and renal diets. She is one of two parents trained to be facilitators for a new peer support group set to launch in January. The Pediatric Parent and Caregivers Support Group will be held virtually, so participants can take part by video chat on their computer or dial in by phone. It will be open to anyone who is caring for pediatric renal patients in Ontario, and across Canada.

“I don’t think caregivers of children with kidney disease have had a voice for a very long time. This group is very much needed so that parents and guardians don’t feel alone on this journey with their kids,” says Sadia Baig, Programs Coordinator with The Kidney Foundation of Canada. “The goal of this group is to connect families to one another since they have similar lived experiences, stories and journeys.”

Once the group is up and running, the goal is to invite guest speakers like dietitians and social workers. While peer support groups do not provide medical advice, these experts can help answer questions and offer an educational component.

“I think peer support is extremely important for caregivers,” Sadia reflects, noting that she grew up with kidney disease and has seen the burden it places on children and