Our Family Advisory Network (aka CHoR FAN), is celebrating its second birthday. What began as a small group of parents and caregivers coming together to provide feedback on their experiences has turned into much more, for both the families and the hospital.

“The Family Advisory Network is an avenue for caregivers to have a voice in the care we deliver at CHoR,” said Jan Kirby, RN, pediatric patient advocate and CHoR FAN facilitator. “They all come with their individual stories, but the focus is on the bigger picture and how we can improve processes and services for all families.”

The current group includes 12 parents/caregivers and five team members. Some of the families come to CHoR for primary care services only, while others have children who receive coordinated care from multiple specialists.

 

Rebecca Gibbs is one of CHoR FAN’s original members. Her preemie was transferred to CHoR at four months of age and spent 10 ½ months in our NICU. Rebecca’s family continues to come to CHoR for regular appointments.

“I got to see a lot of both hospitals, so I felt like I could offer a good perspective,” said Gibbs. “The group is a great collective of people with different backgrounds, yet we’re all similar because we have children we care greatly about. We know there are other families in similar situations. They may not realize we’re here working behind the scenes, but we’re focused on making the hospital experience more enjoyable and less scary for them.”

The group meets monthly and their initial charge was to offer feedback on projects already in the works. One of their first endeavors was a walk-through of the Children’s Pavilion to offer fresh insight and recommendations before it opened to the public in March 2016. Several of the building’s family-friendly amenities, such as Step ‘n Washes to make handwashing easier in the restrooms and grab-and-go food and coffee, were initiated by CHoR FAN. They also had input on the fun themes that recently wrapped the CT and MRI rooms.

Though the Children’s Pavilion was near completion when CHoR FAN began, the group has been instrumental in many other projects since then.

“It’s amazing to see the difference from where we started to where we are today,” added Kirby. “We’ve gone from people coming to us for feedback to having families sitting on work groups and committees and being an active part of implementing projects from the ground up, literally.”

CHoR FAN members represent patients and families on committees planning our new children’s inpatient tower. They’re also involved in CHoR’s strategic implementation process and have been integral in advocating for the passive vital signs movement to let children sleep at night rather than waking them for vitals checks, when medically appropriate. They’ve initiated a medical binder program as well to help families in the NICU and PICU sort through the overwhelming amount of medical paperwork and compile it into organized notebooks.

While the group members come up with many ideas on their own, they continually bear in mind that they’re representing a greater whole. They regularly review patient satisfaction scores and look for areas where they can make recommendations to improve the overall patient experience. For instance, they’ve identified a need for a support group for families of children with complex medical needs and are working on a plan to implement it.

Just last month, they took their first step into the realm of education, providing observations and topics for a panel discussion for the CHoR residents. They provided insight into what it’s like to be on the receiving end of medical information and offered suggestions to the residents for communicating with patients and families as they begin their careers as pediatric specialists.

Jan Kirby attributes the group’s success to two things – the passion of its members and hospital leadership’s genuine desire to have CHoR FAN’s voice represented in important decisions.

“Our medical and administrative leaders really embrace the idea of family involvement. They actively seek input from the families and want to make sure their voices are heard,” she said. “And the families are amazing. As the group facilitator I may be driving the bus, but they’re my GPS. They’re guiding the process and giving of their time and talents to help make CHoR the best it can be.”

CHoR FAN is always welcoming new members. Learn more and submit an application.