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Bridging the gap
Child Life specialists work with patients and families to make hospital stays easier on everyone
"Don't forget to tell them the rules," 7-year-old Lia DiFronzo says to Amber Soulvie, her Child Life specialist. Lia sits in her hospital bed with a hot pink knit cap covering her head, which is balding as a result of treatment for her leukemia. Clutching Moosie, her favorite stuffed animal, she forfeits her other arm to the nurse at her bedside.
Soulvie explains Lia's IV specifications to the nurse: "Tell Lia exactly what you're going to do, don't count before you stick the needle in and make sure she can see it."
Lia's mom, Laura, stands just outside the door. "Lia loves to have Amber supporting her," she says. "I don't know what we would do without the Child Life specialists; they make the hospital stay bearable because it can be hard to be between these four walls."
Lia's hospital room is covered in hand-drawn pictures, tissue paper flowers and other crafts that are a testament to the time she has spent at Children's Hospital Boston, and to the close relationship she's developed with Soulvie and her Child Life colleague, Sarah Sullivan, in the last two years.
Lia was diagnosed with leukemia, a type of blood cancer, in 2006. In an effort to cure her, she got a bone marrow transplant from her 9-year-old brother, Rico. Unfortunately, her illness recurred and she returned to Children's last September to have her second bone marrow transplant, this time from an unrelated donor—with the exception of a short break; she's been in the hospital since.
The main job of Soulvie, Sullivan and the other 28 Child Life specialists at Children's is to use developmental interventions and play to help patients adjust to, cope with and understand their hospital experience—especially for patients like Lia who have long stays and extensive treatment. They do it in different ways for children of different ages. For a 7-year-old like Lia, it's playing board games or helping her adjust to medical equipment by using paint-filled syringes during arts and crafts; for adolescents, it's coordinating social events with other patients their age; and for younger children, it's performing procedures on teddy bears so they can understand what will happen to them. But the common thread is that Child Life specialists are educated and trained to assess where patients are physically, mentally, emotionally and medically, and use that information to bridge the gap between home and the hospital.
There's a Child Life specialist on every inpatient unit at Children's and in several other settings, like the emergency room and the operating rooms. And unlike several decades ago, when it was possible only to take a class or two about the field, today you can get undergraduate and graduate degrees in Child Life.
"I've always believed that play shouldn't stop when children are in the hospital," says Myra Fox, who retires this summer after directing the Child Life Services Department at Children's for three decades. "Play is how children communicate, so helping them do it while they're here gives them the opportunity to better understand and cope with the hospital experience."
Soulvie echoes this sentiment: "Part of our job is to help kids vocalize their questions, thoughts and worries and advocate for themselves." For Lia, this has meant helping her say what works for her and what doesn't. "She has grown and changed over time," says Sullivan. "Amber and I are constantly thinking of creative ways to support her."
When Lia was first diagnosed, she was on Sullivan's hematology/oncology floor, and together they used distraction techniques, like counting and blowing bubbles, to keep her mind off of potentially painful treatments. But today, Lia likes to distract herself by doing everything from asking a nurse what sort of medicines are being hung on her IV pole to preparing questions for her doctors.
All of the stress related to this type of illness and its treatment doesn't just affect the patient; it also takes a heavy toll on the rest of the family. Some Child Life specialists offer coffee hours so parents can take a step away from the bedside and, if they choose, talk about their child's care or something else entirely for a few minutes. They also offer "Just for Sibs" nights, which Rico takes part in, to allow siblings to share experiences and emotions since the focus of the entire family is on the hospitalized sibling.
"As a Child Life specialist, you take it day by day with each family, helping them cope through a procedure or event, and each day we start it all over again," says Sullivan.
The relationships that Child Life specialists develop with families help them work with nurses and the rest of the care team to keep treatment on track and spirits up. Soulvie and Sullivan know Lia likes visitors, so they keep her actively involved in the hospital's art and music therapy programs. They also know Lia reacts well to a sense of accomplishment, so Soulvie recently worked with her physical therapists to devise a sticker chart that shows the things that Lia needs to do each day, like standing up to get weighed, trying to eat and sitting up in bed five times. Each time she's successful, she checks the item off her list and earns points toward a special treat.
"Right now it's all about finding the balance between motivating her and supporting her, depending on the day," says Soulvie. "The family might need me to be silly one minute and a listening ear the next. I do my best to assess these needs and meet them on a daily and even hourly basis."