The Children’s Hospital of Philadelphia is known for its unparalleled expertise in what’s good for children and their health, but when it comes to the experience of actually being a CHOP patient, there’s one source of information that can’t be topped: the kids themselves.
That’s why in 1999, CHOP created the Youth Advisory Council (YAC), a group of 30 CHOP patients who meet monthly to give their input on everything from the design of new patient pajamas to the cafeteria menu to the artwork that will be in the new Buerger Center for Advanced Pediatric Care. They do it purely for the chance to give back to other kids and make the CHOP patient experience better.
At one recent meeting, staff from CHOP’s REACH program, which helps older teens with chronic illness manage their health as they become independent and go to college, sought YAC’s feedback.
“What are you worried about?” they asked. “What information would most help you?” YAC members thoughtfully looked over the REACH brochures and suggested the team create an electronic version the kids can read on their phones, and maybe add more fun colors.
It’s quickly evident that everyone in the group is poised and well-spoken. Each year, the group’s leaders reach out to nurses, Child Life staff, social workers and other CHOP teams to ask for nominations.
“We ask for recommendations of kids ages 11 to 17 who are energetic, can provide thoughtful feedback and have had an experience at CHOP — be that inpatient or outpatient,” says CHOP social worker Stephanie Fooks-Parker, MSW, who has been one of the group’s leaders since its inception.
YAC has created several videos, including one on how clinicians can best speak to teen patients and another on handwashing. Last year, they created a faux news broadcast video that helps orient new patients to life at CHOP. They also know how to have fun, both throwing parties for inpatients and joking around at meetings. YAC members have a lot of inside jokes, 19-year-old Jessica Franklin says: “Most of them involve yaks.”
— Julie Sloane