Patient and Family Guide

Kids As Partners and Teen Advisory Boards - Asking for Kids Contributions

two sisters"Boy, I wish I could . . ."
Parents whose children have endured extended stays in the hospital most likely have heard that phrase. It can be completed in a number of ways. I wish I could order pepperoni pizza off the room service menu. I wish I had PlayStation2 in my room. I wish the hospital library had the latest edition in the Harry Potter series.
One of the most frustrating aspects of inpatient life, for kids and parents alike, is the lack of control they have over their environment.
With the formation of two councils - Kids As Partners (KAP) and the Teen Advisory Board (TAB) - American Family Children's Hospital has taken an important step toward hearing and addressing the concerns of its younger patients.
The First Steps
In 2002, Mary Kaminski, then manager of UW Children's Hospital's Child Life program, decided she needed a better way to gather input from the young patients and parents with whom her staff worked. Informally, they heard the suggestions and did their best to implement them, but Kaminski envisioned a more efficient, rigorous process.
"We wanted to get the perspective of the child as patient and to really understand what their experience in the hospital is about," she said. "We knew they would be able to offer suggestions that we hadn't thought of."
Kaminski turned to Beverly Johnson, president and CEO of the Bethesda, Maryland-based Institute for Family-Centered Care. Johnson's organization is a non-profit group that provides recommendations to hospitals that want to advance the practice of family-centered care.
Her work had taught her that patients were more than willing to contribute if given a proper avenue, so Johnson advised creating an official group that would meet regularly and ask for the opinions of both children and parents.
"We have a better understanding of the perceptions of patients and families when we have an opportunity to listen to them and dialogue with them," Johnson said. "With a council you have this ongoing resource of information, ideas and creativity that can enhance the quality and safety of health care."
Kaminski agreed, with one slight deviation. Instead of one group, her staff decided to form two.
'An 18-year-old has different issues than an 8-year-old'
In the early months of 2002, as a hospital-sponsored communication council moved from idea to reality, the Child Life staff decided to create not one but two councils. The Teen Advisory Board (TAB) would be for patients between the ages of 13 and 18 years, and Kids As Partners (KAP) would involve patients 8 to 12 years old.
Not every hospital does it that way, but in their work helping children understand and cope with the hospital environment, the Child Life specialists realized that patient needs and preferences varied widely according to their ages. One group just wasn't going to get it done.
"We are unique in that we separate the councils," said Julie Auenson, who has led KAP since its inception. "An 18-year-old has different issues than an 8-year-old."
Auenson and fellow Child Life specialist Tina Treuter, who initially headed up TAB, began talking to patients and sending letters to the parents of former patients. The response was positive, and TAB launched the first of its quarterly meetings in May, 2002. KAP followed in November and now meets every other month.
The impact of both can be seen in the American Family Children's Hospital today. When Children's Hospital leadership was discussing options for decoration and design, TAB and KAP participated in a meeting with then-Vice President David Berry and helped pick out kid-friendly patterns.
"We talked about making it seem more like home, because kids are kind of afraid when they go there," said 16-year-old Mandy Bidwell, whose involvement with TAB stretches back three years. "If you do things like make the rooms colorful, then kids wouldn't be as scared and they'd think it'd be a good place to be."
The expanded room service menu options came under KAP's scrutiny before they were unveiled.
"The person who was in charge of the menu brought some items they could taste," said Auenson. "(KAP members) got to look at the new menu and give input as to whether there were enough kid-friendly choices."
With each meeting come fresh ideas. For instance, TAB worked with the hospital's Learning Center to produce a CD on the elements of undergoing a surgical procedure, from admission to discharge.
Mutual Benefits
Lara Roling said her daughter Tessa has benefited from the sense of community her participation in KAP provides. "It let Tessa meet other children that have been in the hospital, too, so she does not feel like she is the only one," she says. "She can talk about things she likes and dislikes, and share with other children so they are not so scared."
For her part, Tessa appreciates being able to talk to her friend and fellow KAP participant Samantha Hendrickson, because Samantha also knows what it's like to have an IV or to go through an MRI scan.
Amy Benda, whose daughter Natalie is on the KAP board, echoed Kaminski's belief that the councils help build the children's self-esteem.
"When they see these changes being incorporated into the plans for (the American Family Children's Hospital), it makes the children feel important," she said. "And their ideas may make others feel more comfortable when they are patients."
Auenson reinforced that point in talking about a KAP member, a naturally shy girl who has used the group's forum to find her own voice.
"At first she would never talk - she would just whisper into her mom's ear," Auenson said. "Now she talks out loud at the meetings. (Her mother) said her daughter has really come out of her shell by being in this group."