Child life program helps hospitalized children handle stress, have fun

It was a young girl with epilepsy who made Susan Kinnebrew certain she’d chosen the right career.

The girl was scheduled to undergo surgery for her seizure disorder. She was scared. To get through the procedure, she wanted something beyond the expert ministrations of her brain surgeon, anesthesiologist and operating room nurses. She wanted to bring her favorite doll.

Kinnebrew was just starting her career at a Florida hospital as a child life specialist, an expert in helping children and their families handle the stresses of illness and the hospital environment. She understood the importance of that security object.

She and the other caregivers made a plan: Kinnebrew and the doll would accompany the girl into the operating room, where the doll could stay on the girl’s bed until she was anesthetized. Kinnebrew would then take the doll and make sure it was back on the girl’s bed before she awoke.

“Going to the OR with her, I knew this was for me,” Kinnebrew said. She saw how much the doll’s presence — and her own — eased the child’s fear. “She eventually had a total of four surgeries, and even at the last one, at age 18, she said, ‘I need you with me.’”

Supportive role

Today, Kinnebrew directs Child and Family Life Services at Lucile Packard Children’s Hospital Stanford, where she took over the director’s role in November. Her team works with patients and their families to help kids be kids, even when they’re hospitalized.

“The family supports their child in a different capacity than we do,” Kinnebrew said. “The parent is there to be the parent, to provide the love and comfort kids need from their mom or dad. We’re there to help the child understand the medical side of the process on their own developmental level, and to give psychological support to the entire family.”

“Many of our families come in to the hospital with a high level of anxiety because their child is ill,” said Anne McCune, the hospital’s chief operating officer. She has seen countless instances in which child life specialists eased that anxiety. “They make very deep connections very quickly with children,” she said, adding that the child life specialist is often the person a child remembers most fondly after going home from the hospital, a fact reflected in comments on patient satisfaction surveys. “From the feedback we get, we know they make a tremendous difference,” McCune added.

On a typical day, Kinnebrew’s team can be found at patients’ bedsides, educating hospitalized kids about medical procedures and giving them opportunities to have fun. They staff the Forever Young Zone, a recreational area in the hospital that is free of white coats and medical procedures; facilitate pet therapy and play therapy; and assist the entire family, including healthy siblings who may feel left out by the focus on their ill brother or sister.

As part of their training, child life specialists earn a bachelor’s or master’s degree in child development or a related field, including specific coursework set by the Child Life Council, the profession’s national accrediting body. They also must complete a minimum of 480 hours of clinical work under the supervision of a certified child life specialist and pass a certification exam.

Refreshingly un-medical

On a recent afternoon, child life specialist Jake Lore checked on 18-year-old Lucia Ruiz, who was spending four hours at Packard Children’s to receive infusions of medication and fluid for her acute lymphoblastic leukemia. Sitting on a hospital bed connected to an IV was boring. Ruiz asked Lore to bring her some things to do.

Lore left and returned with two mystery novels and some art projects. He knelt next to Lucia’s bed to show her the painting supplies and a set of small cardboard boxes with matching lids for her to decorate.

“Do you like art?” Lore asked.

“Yes, I took it in high school,” Ruiz said.

“Oh, maybe these are too easy for you!” Lore said.

Play is a crucial part of how children develop. You can’t lose that aspect when kids are in the hospital.

Soon they fell to chatting about whether they considered themselves dog or cat people. Ruiz loves dogs; when she was hospitalized for several days after her cancer diagnosis last summer, she especially enjoyed visits from two of the hospital’s pet therapy dogs, Guinness and Cici. Lore began describing the antics of his own dog; Ruiz listened eagerly. He wasn’t fixing her IV or explaining her prognosis, and he wasn’t rushing off to the next thing; the whole interaction was refreshingly un-medical.

Lore and his colleagues have also assisted Ruiz in difficult moments, bringing books to explain leukemia and how her body would respond to treatment, for instance. “They’re a big help for you to cope with everything and get a sense of having a support system,” she said.

Patients like Ruiz also benefit from many events the child life team organizes, including recreational outings for kids with cancer, hospital visits by local pro athletes and annual festivities such as the hospital’s Halloween Trick or Treat Trail and other holiday parties.

Importance of play, creativity 

“Play is a crucial part of how children develop,” Kinnebrew said. “You can’t lose that aspect when kids are in the hospital.” The opportunity to visit with a therapy dog, play video games with friends or express themselves creatively through art projects isn’t a luxury for sick kids, she adds; it’s a significant part of how the hospital helps them get well.

And, just as she did for that young epilepsy patient having surgery, Kinnebrew and her colleagues help kids handle medical experiences in ways that are tailored to the child’s developmental stage. To help a preschooler prepare for an MRI scan, a child life specialist uses dolls and toy versions of medical equipment to demonstrate, through play, everything that will happen during the scan. The explanation uses simple, nonthreatening terms that focus on what the patient will see, smell and hear. For a teenager getting ready for the same scan, the specialist gives a more detailed explanation of the procedure, encourages the patient to ask questions and may take the patient to visit an MRI machine in advance. 

During a procedure, child life specialists can also help make it easier for a child to hold still or cooperate. For example, Kinnebrew vividly remembers using guided imagery — verbal cues that enable someone to use their imagination to relax — so that she could help her own toddler cope with getting stitches for a minor injury. While the sutures were going in, she talked him through the plot of his favorite movie, Toy Story, distracting him so successfully that the medical team did not need other techniques to immobilize him.

Research demonstrates that all these efforts make a difference for hospitalized kids and their families. Child life programs have been shown to reduce children’s postoperative pain, lower parents’ anxiety about their kids’ hospital stays and decrease the emotional distress children feel about being at the hospital.

“There is so much you can do if you are able to be the voice that is helping a child get through a hard time in the hospital,” Kinnebrew said. “That’s what makes the field of child life so powerful and effective.”