The Parent Family Advisory Council recently celebrated its 30th anniversary with a celebratory dinner and outing to an Akron RubberDucks game.
Thirty years ago, the seeds of Akron Children’s Parent Advisory Council were planted in the legacy of one little girl. Angie Swords, a hematology/oncology patient, passed away from childhood leukemia at the age of 13. During her hospital stays, Angie painted colorful suncatchers and gave them to nurses, staff and friends. Her mother, Joyce, wanted to carry on Angie’s spirit of giving by sharing what she had learned as a parent navigating her daughter’s care.
After Angie died, Joyce wrote to Akron Children’s then-president and CEO Bill Considine both to praise the care her daughter received and to suggest opportunities for improvement. Mr. Considine welcomed her feedback, opening the door to create a formal structure for patient and family feedback. In 1995, the Parent Advisory Council was born.
Mr. Considine proudly hung one of Angie’s suncatchers in his office, which remained until his retirement decades later. It served as a steadfast reminder that families belong at the center of patient care.
Party attendees decorated their own suncatchers. The suncatcher has been the symbol of PFAC since its inception.
This year, to honor its 30th anniversary, the council was renamed the Patient Family Advisory Council (PFAC) to better reflect its diverse membership.
Built on partnership
Joyce’s vision was philanthropically supported by her employer, ComDoc, and the Lochridge family, allowing her to dedicate time to Akron Children’s while continuing to work. This collaboration helped the council and Parent Mentor Program grow side by side.
While the council gave structured feedback to leadership, the Parent Mentor Program paired experienced parents with those newly navigating a diagnosis. These volunteers didn’t offer medical advice, but they did provide the kind of wisdom only another parent could — how to manage daily life in the hospital, what questions to ask and how to cope with uncertainty.
Today, both programs remain volunteer driven. Members undergo confidentiality training and commit their time and experiences to supporting others.
For many years, PFAC sponsored a Chalk the Walk event in Perkins Park. Patients, families and hospital staff were encouraged to choose one of the giant sidewalk squares and tell their hospital story.
Shaping the patient experience
Over 3 decades, PFAC has influenced nearly every aspect of care at Akron Children’s including:
- Reviewing patient/family educational materials.
- Advising on building design and renovations.
- Helping improve food menus.
- Creating smoother, safer transitions for young patients moving into adult care.
- Improving wayfinding.
“Since they are parents who have been here with their kids as patients, they know some of the things that are challenging for people,” said Joy Burt, patient experience manager.
December West (pictured with her family upper right) joined PFAC in 2018. Through PFAC, she found new opportunities for advocacy. She has served on the hospital’s Disparities Workgroup, the Akron Children’s Health Collaborative board, Complex Medical Help Parent Advisory Committee and now works with the Ohio Department of Health as a parent consultant. Her daughter, Xyia, (pictured with current Akron Mayor Shammas Malik) has also been a member of the Teen Advisory Group and even started her own foundation called Limitless Dreams to benefit local youth.
She recalled when council members toured the cardboard mock-up of the under-construction Kay Jewelers Pavilion. “They noticed small but crucial details like doorway widths not wide enough for wheelchairs and the need for restroom changing stations for older children,” Joy said. “Those changes made a real difference.”
Among the council’s most significant impacts was helping advocate for a transition program for young patients moving into adult care.
“One of the most eye-opening things families shared was how unprepared they felt when their children aged out of pediatric care. Their stories pushed us to create a true transition program, led by Dr. Sarah Friebert, in collaboration with Summa Health and Cleveland Clinic Akron General,” said Joy. “Instead of families being left to ‘figure it out,’ we now have a structured process and resources to help them navigate that next stage of care.”
Micah Cheshire, PFAC’s current operational leader, said, “PFAC members love Akron Children’s, and they want us to be the best we can be. That pride and commitment are what has kept us strong for 3 decades and will carry us into the future.”
Finding community, making an impact
For many parents, joining PFAC is about more than giving feedback — it’s about finding support.
December West — a mom of 5, including 3 with special health care needs — joined in 2018 after her friend, Kristin Hafford, former patient and family engagement program coordinator, suggested she would be a good fit.
“It was comforting to learn there were other families going through things similar to me,” December said. “We shared our stories and were a wonderful support system for each other.”
Through PFAC, December found new opportunities for advocacy. She has served on the hospital’s Disparities Workgroup, the Akron Children’s Health Collaborative board, Complex Medical Help Parent Advisory Committee and now works with the Ohio Department of Health as a parent consultant.
The group also connects with the next generation through its Teen Advisory Group (TAG). December’s daughter, Xyia, became involved and eventually launched her own nonprofit, Limitless Dreams. Each fall, she organizes a field day at Firestone High School where children with special health care needs play sports alongside high school athletes. Participants are able to talk with vendors from Northeast Ohio like Adaptive Sports Ohio, Summit DD and ASPIES, to name a few. PFAC sponsors the T-shirts for the event. This year’s event is scheduled for Sept. 14 from 1-4 p.m.
“I’ve always wanted to help people and give back,” Xyia said. “This event allows me to turn my experiences into something purposeful that benefits others.”
Growing, adapting and connecting
Today, PFAC includes about 15 to 20 members, selected through referrals, clinical team recommendations or applications on the hospital’s website. Members may also transition into Family Action Collaborative Teams (FACTs), which focus on areas like the NICU, PICU or autism care.
Lifelong friendships often form among members, who stay in touch through a private social media group even after their 3-year term limits end. “People don’t like to leave,” Micah Cheshire, patient experience initiative specialist for patient and family engagement and current PFAC operational leader said. “The connections they make here are strong and lasting.”
The suncatcher that used to hang in the atrium lobby is due to be rehung, along with one on the Boardman campus.
Honoring the past, looking to the future
To mark its 30th anniversary, PFAC is hanging suncatchers in the hospital’s atrium lobby and at the Boardman campus. The suncatcher has become PFAC’s symbol, a reminder that families have a voice at Akron Children’s.
Reflecting on the group’s history, Micah said, “They love Akron Children’s, and they want us to be the best we can be. That pride and commitment are what has kept us strong for 3 decades and will carry us into the future.”
Joy added, “The fact that the group has only had 3 operational leaders since its inception — Judy Doyle, Kristin Hafford and now Micah Chesire — also speaks to how special this group is.”
The Patient Family Advisory Council and the Parent Mentor Program at Akron Children’s are now two of the longest-running programs of their kind in the country. Learn more about becoming a parent advisor or mentor.
