When you’re a teenage girl in the throes of prom season, it’s devastating to find out you have leukemia and that chemotherapy will cause all your hair to fall out. Kosair Children’s Hospital in Louisville, Ky., has an answer for that. Enter the “Coping Cart,” a mobile multimedia system designed by pediatric psychologist Bryan D. Carter, PhD, to ease children’s stress and anxiety about illnesses, medical procedures or treatment regimens.
The cart — which some say resembles a refrigerator on wheels — is decorated with a jungle and ocean theme to make it look “less sterile,” Carter says, and opens up to reveal an iMac computer complete with a webcam and video editing software that allow patients to create clips about their hospital stays, their understanding of their medical conditions and their coping experiences.
Patients can also watch videos made by other kids who discuss how they overcame fear and anxiety around diseases or medical procedures. In one video, 18-year-old Kristen talks about the fun she had picking out wigs to wear after she lost her hair to chemotherapy. Another features 12-year-old Cody, a cancer patient, discussing the difficulties of pill swallowing: He shows viewers how to relax their throats, demonstrating with Nerds and Sweet Tarts candies.
“Using these videos has become a way to reach out to kids to help them see another child going through something similar and how they did it,” says Carter, director of the pediatric consultation-liaison service at Kosair Children’s and a professor of child psychiatry and pediatrics at the University of Louisville School of Medicine.
In addition to the video component, the cart houses a printer and scanner to allow kids who aren’t interested in creating videos to write stories or create comic books about their experiences. The cart also includes a clinical biofeedback unit, which monitors patient heart rate variability and galvanic skin response, two important correlates of relaxation and decreased anxiety. A video game interface teaches children relaxation, coping and anxiety management skills. Younger children enjoy the cart’s toy stethoscopes, dolls, puppets and surgery tools, which allow them to demonstrate what happens during a medical procedure and feel more in charge of their care by acting as the “experts,” Carter says.
This year, the hospital’s marketing team began uploading several of the videos onto a special website, where patients worldwide can access them. Already, Carter says he has received feedback from a colleague in Chicago whose pediatric cancer patient overcame his pill swallowing phobia after watching Cody’s video.
The idea for the Coping Cart — funded by a 2006 grant from the Kentucky Psychological Association Foundation — stemmed from Carter’s training in the theories of Stanford University psychologist Albert Bandura, PhD. His social learning theory — that people learn best from role models with similar characteristics — is put into practice nearly every time he wheels the cart in to work with a patient.
In April, for example, Carter used the cart to distract an 8-year-old patient who was admitted with severe burns on his legs. During the boy’s first dressing change, Carter turned on a video of a girl demonstrating deep breathing techniques and talking about how during painful procedures, she thought about ice cream, marching bands and her other favorite things.
“Instead of us telling him what to do, he’s seeing another child model it and talk about it,” Carter says.
The videos often work particularly well with children who are withdrawn, don’t want information about their conditions or refuse to talk about their anxieties, behaviors that can lead to added stress and even contribute to noncompliance. Seeing how other children cope with their fears often enhances connections with otherwise hard-to-reach kids better than traditional talk therapy. “It’s kind of a stealth way of getting through to these kids,” Carter says.
The children who create the videos benefit as well, says Jeffrey Grill, MD, a professor of pediatrics at the University of Louisville School of Medicine who refers many inpatients to Carter’s team. Grill says the Coping Cart’s video editing tools help the young videographers develop a sense of mastery over the illness. In one video, for example, 16-year-old Seth talks about how much he dislikes undergoing his treatments for cystic fibrosis, but admits that if he didn’t, he couldn’t play his favorite sport, soccer.
“They’re getting therapy for themselves by helping other kids cope,” Grill says.
After using the cart’s tools and consulting with a pediatric psychologist, many patients don’t return to the hospital for problems related to coping with their condition or managing stress — a huge marker of the program’s success, says Grill and others. Grill says he only sees patients again if new medical issues arise, and even in such cases, most patients become more goal-directed and less anxious about their conditions.
“These kids are able to function better through what Bryan teaches,” Grill says. “He gets them back to the things kids should be doing.”
As a spin-off from seeing pediatric patients with chronic pain issues via his consultation-liaison work at Kosair Children’s, and with funding from the Norton Healthcare Community Trust, this year Carter also launched a treatment program for adolescents with painful and fatiguing conditions, the Children’s Health & Illness Recovery Program. This program also includes a website containing patient- and parent-generated videos for use by both patients and clinicians.
Amy Novotney is a writer in Chicago.