‘Life specialists’ help young patients cope with illness

Child life specialist Liz Anderson of Children's National Medical Center explains how she uses play to help 2-year-old Jade Tukan, a cancer patient, understand her medical care. (Kaiser Health News 2012)

Before outpatient surgery, for example, child life specialists at Children’s bring kids a coloring book, “Travel Through Surgery With Dr. Bear,” which walks them through the experience. The book includes a page where the children can have all of their doctors and nurses sign, as if they’re collecting autographs from characters at Disney World.

While children wait for surgery, the specialists give them anesthesia masks and oils that smell like bubblegum, cotton candy and strawberry to make the masks more pleasant to wear.

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Improving safety

“Even the most old-school and ornery surgeons” are grateful for child life specialists, says Rahul Shah, an ear, nose and throat surgeon at Children’s. “What looks like a warm and fuzzy interaction actually has significant productivity gains for us,” he explains.

Without a child life specialist, he continues, “you’re pulling [patients] sometimes away from the parents. The parents are upset, the child is upset. It heightens their anxiety. When you bring them back to the operating room, it’s a lot harder to put them back to sleep, it’s a lot harder to give them an IV.”

Shah estimates that each visit with a child life specialist can save his surgical team three to five minutes. “With 10 kids, that’s 50 minutes — that’s another surgery,” he explains.

The hospital believes that child life specialists improve not only productivity but also safety. In January, Children’s started a program called “MR-I Can Do It” to reduce the need for anesthesia during MRIs. In rare cases, anesthesia can cause allergic reactions, breathing problems and heart irregularities in children.

Before the program started, almost all children younger than 12 were automatically sedated with anesthesia for the exam, which requires kids to stay still in a confined tunnel for about 60 minutes, often in an uncomfortable position.

But the hospital has found that an hour and a half with a child life specialist can make anesthesia unnecessary. Before the exam, the specialist takes the child into a playroom, and the child is given a cloth doll to put through a mini mock MRI scanner, to help teach them about the procedure. The kids also crawl through tunnels, where the specialists play audio of the loud buzzing sounds of an MRI, so they’ll know what to expect.

During the exam, specialists give the kids cinema-vision goggles through which they can watch movies and noise-canceling headphones to help distract them. So far, more than 125 kids have had an MRI with no sedation; the youngest was not yet 3.

‘It’s just really awesome’

On a recent day, during Jade’s fifth and final round of chemo, Anderson offered her a life-size cloth doll with a central line tube just like the one protruding from the little girl’s chest. Jade, who wore sparkly pink sunglasses despite being indoors, looked at the doll’s tube, amazed. “Tubie!” she proudly proclaimed, before fetching a plastic syringe from a toy medical kit and injecting the doll with pretend medication with impressive accuracy.

“She knows and understands details we’d never think she would,” Anderson says. “She recognizes that the tubes have to be cleaned first, that the syringe gets twisted on. Those are things we’d never expect a 2-year-old to understand, let alone process, so we need to make sure she’s understanding the right things.” Manipulating the toys in a play setting allows her to “process what’s happening to her in a non-traumatic way.”

After eight months in and out of the oncology unit at Children’s, Jade is now back home with her family in Fort Washington. “It’s just really awesome,” her mom says. “We’re still a little tired, but really we’re just overjoyed to be at home and to see her fall into the swing of things, playing with her brother and just doing everything a normal 2-year-old should be doing.”

Kaiser Health News is an editorially independent program of the Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

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