Celebrating 20 years

When the Youth Advisory Council (YAC) and Family Advisory Council (FAC) were formed in 1998, a partnership was created between the health care team and pediatric patients and family members to actively participate in the process of re-establishing a children’s hospital within the University of Iowa Hospitals & Clinics structure. 

At the heart of this philosophy was a commitment to enhancing the delivery of patient- and family-centered care. Parent and youth advisors seek to improve the health and well-being of children and families by building and maintaining collaborative partnerships with hospital staff to improve clinical quality and safety, as well as the overall pediatric care experience, for children and families.

Now 20 years later, YAC and FAC continue to strengthen a culture of patient- and family-centered care, processes, procedures, policy, and facility design considerations at UI Stead Family Children’s Hospital. 

The YAC has made a significant impact on the children’s hospital—a playground was developed with the help of council members, and room designs in the current building had significant input from the council—but also on UI Hospitals & Clinics. 

One of the first projects completed by the councils was working with dining services to create A la Carte ordering from patient rooms.

“It used to be that patients would get menus before each meal, and the breakfast menus came the night before,” says Tami Pollari, director of Patient- and Family-Centered Services at UI Stead Family Children’s Hospital. “Then the kids on the council started talking about it and working with staff in Food and Nutrition Services. They made their case – if they’re having chemo or other procedures in the morning, they don’t know what they’re going to feel like eating, or when.”

Now, patients in both UI Stead Family Children’s Hospital and UI Hospitals & Clinics can order meals to be delivered to their rooms at any time between 6 a.m. and 8 p.m. daily.

Creating the children’s hospital’s mascot, Perky, was also one of the early projects of the YAC. Young patients were sometimes scared of the Iowa Hawkeyes’ mascot, Herky, so the group advocated for a mascot for the children’s hospital.

Herky’s cousin, Perky, was “hatched” at a University of Iowa basketball game in 2002, says Gwen Senio, manager of the Child Life program at UI Stead Family Children’s Hospital. 

“The older kids really loved Herky, but YAC members understood that younger children might be frightened by the fierce expression on Herky’s face,” Senio says. “Perky smiles. Little kids appreciate her friendly nature.”

More recently, members of YAC had the idea of creating “Drew’s Lamp,” a custom lighting feature designed especially for patient rooms at UI Stead Family Children’s Hospital. Drew’s Lamp was inspired by, and named in honor of, Drew Wall, a member of the YAC who passed away in 2012 at the age of 16. Drew was cared for at UI Stead Family Children’s Hospital for five years, and when he’d come for an inpatient stay he’d bring a small bedside lamp. For Drew, the lamp helped create a more home-like environment but also gave him a bit of control over his situation.

Drew’s Lamp consists of seven light cubes mounted on the wall near the patient’s television. Using a bedside remote, patients can control the colors and brightness of the lamp to suit their own personal tastes or mood.

Sarah Henderson served on the YAC when Drew’s Lamp was discussed.

“We talked so much about the rooms, and the lamp was something we really wanted to do,” Sarah says.

Sarah was a 15-year-old high school sophomore when she was diagnosed with Stage 4 Hodgkin lymphoma, a form of cancer that starts in the lymph nodes and can spread to other organs. As an energetic and charismatic teenager looking for ways to be involved in her care, she says she often found herself with little to do; because the disease typically occurs in either very young children or in adults, there were few patients at UI Stead Family Children’s Hospital with whom Sarah could relate.

That’s when child life specialists asked if she’d be interested in serving on the Youth Advisory Council.

When Sarah joined the YAC, hospital leaders were in the early stages of planning and designing the new children’s hospital building.

“Architects would bring in not only some of their plans, but their color mockups and furniture patterns, and we’d get to have input on those choices,” Sarah says. “We had definite input on the design of the rooms; all of us agreed that when we were in the hospital, we hated seeing all the cords everywhere and feeling so ‘hospitalized,’ so we suggested the cabinets where the cords now go and that the walls be another neutral color and not just white.”

Sarah “graduated from” the YAC when she finished high school, but she was still called upon to talk with medical students about working with pediatric patients.

“That part was really fulfilling for me, to know I had made an impact on a future doctor,” Sarah says. “High-schoolers are often limited in the scope of their impact to other high school students, so going into classes and speaking to medical students was powerful. I was really hoping that something I said would stick.”

Nick Lebo of Cedar Rapids says that while he’s been a member of the Family Advisory Council for a short time, he knows the group has made an impact on him personally.

“UI Stead Family Children's Hospital has become almost a ‘second home’ to me. Certainly there are patients that have and will spend more time admitted than we did, but I truly do get a feeling of comfort when I return to the hospital,” Nick says.  “Being on the Family Advisory Council has given me a chance to ‘go home’ in a way that is purely positive, doesn't involve medical procedures, and hopefully allows me to help the people and the community that has so much helped my son and my family. I've personally learned a lot from the group, the speakers, and the material presented. I also hope, if only in some small way, I have helped provide insights that would not otherwise have been seen.”

Since 1998, 82 parents have served on the Family Advisory Council and 80 pediatric patients (age 12 to 18) have served on the Youth Advisory Council.