Out of the Mouths of Babes
The five-year-old has gone to the hospital every month of her life. Diagnosed with a rare blood disorder, she gets an intravenous treatment that keeps her alive. She calls the facility the “Pokey Palace”—the doctors and nurses all refer to the repeated IV sticks and shots as “pokes.”
Even so, she can’t wait to get there each month. For her, the children’s hospital is like summer camp or a trip to Disneyland. There are games and activities, a service dog that works full-time doling out sloppy kisses—even a specialist whose only job is comforting kids during their stay.
In short, Liberty Barnes says, it’s a place where everyone from the front-desk receptionist to the lead doctor is deeply committed to making these young patients feel special. The question is whether this feel-good environment can be adapted for big people, too.
Barnes, a postdoctoral research scholar in sociology, is examining what works in pediatric care and whether its successes can be applied to the adult system.
Researchers have historically studied medical care for kids through the eyes of adults, said C.J. Pascoe, Barnes’ research mentor and an associate professor of sociology. Barnes is capturing the experiences of children and young adults, in their own words.
“Children’s experiences are at the center of this project,” Pascoe said. “This work has the potential to reshape how we care for some of the most vulnerable members of our society.”
Supported by a $120,000 fellowship from the National Science Foundation, Barnes is interviewing dozens of children and their parents, asking questions about the care that kids receive and the relationships they form with doctors and other hospital staff. She is doing most of her work through hospitals in Oregon (privacy restrictions prohibit her from identifying participating hospitals and names of patients).
According to Barnes, one strength of the pediatric model is the emphasis that staff place on being an extension of the patient’s family. Pediatric doctors often take an interest in all aspects of a patient’s life, not just health concerns. This builds trust and a family-like relationship because children generally view people in their world who look out for them as family, Barnes said.
That perception that a doctor is family can grow quite strong. One teen described to Barnes having the same physician for as long as she could remember; she was 12 before she realized that the doctor wasn’t her uncle.
Barnes is also spending hundreds of hours with pediatric care personnel—not just doctors and nurses, but social workers, lab technicians and even the people who deliver meals to patients. From these interviews, she is gaining an understanding of the care and concern afforded to young patients.
A neurosurgeon described taking the time to carefully braid the hair of the girls on whom she operates. It wasn’t just to keep hair away from the incision point; the doctor also does it so that when her young patients wake up, they are distracted from the stitches—and the intense, invasive procedure that they represent—and can focus instead on a fun new look.
“The social beliefs that we take for granted—that children are worthy of love, compassion and worry-free childhoods—give pediatric practitioners and hospitals license to do things differently,” Barnes said. “I hope we can find ways to apply those strengths to adult care.”