Sometimes the best ideas are the ones that are borrowed. That turned out to be the case with a program that St. Luke’s Children’s has launched.

“One of our real goals the past couple of years was to establish a parent-mentor program,” said Sherry Iverson, the director of patient and family support services at St. Luke’s Children’s Hospital.

After doing some research, Iverson and her colleagues discovered a program that could serve as a model for St. Luke’s.

“Akron (Ohio) Children’s Hospital has a pretty extensive program, and so there was some contact with Akron about what it looks like to train volunteer parents who have children with medical needs to nurture and support and advocate for other families,” Iverson said.

Claire Sitts, a care supervisor at St. Luke’s Children’s, was tasked with overseeing the parent mentor program, a role she embraced.

“It was always a goal of the Children’s Care Coordination Program to have a parent-mentor program built,” Sitts said. “We work with the most medically complex kids in the system. So, being able to walk through that journey with other parents and see how they have championed through and then having those parents mentoring other families has just been very rewarding.

“We have some pretty outstanding parents who have learned to navigate the health system and find resources to help them.”  

St. Luke’s has trained more than 30 parent mentors since the program was created, and Sitts is enthusiastic about training more and helping the program grow.

“We’re excited about getting the word out to the whole heath system, providers, social workers and nurses so we can start linking some of these families and help them feel more connected,” Sitts said.

When parents are referred to Sitts, she introduces them to other families who have shared their stories, which Sitts keeps in a binder. Eventually, she hopes to have a system that would allow parents to access those stories online.

 “We’ve been recruiting parents who have experience with autism, cerebral palsy, spina bifida, depression,” Sitts said. “We have a pretty big range, probably 20 or 30 different diagnoses that these parents have experiences with.” 

One of those parents is Emily Ballantyne. Her son, Oliver, was born at 25 weeks and five days.

“Because of how tiny he was when he was born his lungs took the hardest hit, and they never came around the way that another preemie’s lungs might,” Ballantyne said. “So, he required in-depth intervention, which was a 250-day hospital stay.”

About a year ago, she went through St. Luke’s training to become a parent mentor.

“I just thought it would be great to talk to other families in our area, families who might have the same questions that I had: How do you manage all this equipment at home? What does it feel like to be dealing with all these nursing agencies?” Ballantyne said. “There were just some big questions that, as much as the medical teams wants to answer them, they can’t give you that real-life perspective of it in the way that another family or another parent could.”

Ballantyne has seen firsthand the benefits of the program and how it could help more and more families as it grows.

“The families that I have chatted with have been really thankful to have someone to chat with,” she said. “They’ve had a lot of the same questions that I had. It’s really about empathy building and saying, ‘I’m at home with my kiddo, and this is what my experience has felt like.’”  

Vashti Summervill has two daughters, and one of them struggled with major depression, anxiety and severe self-harm. Like Ballantyne, Summervill became knowledgeable about the diagnosis and treatment of her daughter’s illness.

“Teens that self-harm has become an epidemic in our country, and so I got involved and just asked, ‘How can we improve things in our community?’” Summervill said.

After sharing some of her experiences, Summervill was invited to serve on the St. Luke’s Pediatric Family Advisory Council. She said the council has discussed the idea of a parent-mentor program for years, and she is pleased that it has come to fruition. Summervill has helped Sitts with some of the logistics of the program and has also gone through the training to be a parent mentor.

“I think it’s really important in the beginning of a new diagnosis or traumatic event to be able to connect with someone who has come through the other side of it and has some optimism and hope,” Summervill said. “As parents and peers, you’re really able to give a different perspective. … It’s a really great component of family-centered care to offer this program.”

How to contact/learn more about the program

Claire Sitts encourages St. Luke’s providers, nurses and staff members to refer families to the parent-mentor program. She also hopes to add more parent mentors as the program grows. To learn more about how to take advantage of the program or to become involved as a parent mentor, contact Sitts at [email protected] or by calling 208-706-6487.