What looks like playtime at a young patient’s bedside at Rush University Children’s Hospital is actually evidence-based therapy with a specific goal: to reduce the disruptive effects of hospitalization on kids’ physical, emotional and intellectual growth. And it’s what the child life specialists at Rush do every day.
Since the emergence of COVID-19, their work has remained essential to patients and families at Rush. Even during the first surge, the child life specialists at Rush were not asked to stay home and work virtually with kids who were hospitalized and needed support, unlike at some children’s hospitals, says Shira Miller, MS, CCLS, manager of child life and creative arts therapies.
“The opposite happened here,” Miller says. “Our leadership, nurses and even our attending physicians would say, ‘If anyone’s going in the room now, it’s child life.’” That’s because the child life team at Rush plays a critical role in meeting families’ psychosocial needs, which have only increased since early 2020.
Helping kids cope with being in the hospital
Whatever a child’s diagnosis, child life specialists at Rush are part of the care team from the very beginning. A member of the child life team is staffed on every Rush unit where kids receive care. This includes inpatient pediatrics, radiology, the outpatient cancer clinic, the emergency department, the perioperative department, the pediatric intensive care unit and the neonatal intensive care unit.
“We’re able to see almost every patient who walks through the doors in the spaces where we’re staffed. Any kid who’s sleeping over in this hospital, having surgery, or going to radiology or one of our other spaces is being seen by a child life specialist,” she says.
Every child life specialist on the nine-person team at Rush has a master’s degree in child development. This expertise helps them teach kids of all ages about their disease, using materials that are familiar to them. For example, an activity called “blood soup” uses different colored candies to help young kids with leukemia or other blood disorders understand how the disease affects their blood cells.
They also help educate kids about their upcoming hospital procedures, whether that’s spine surgery or treatment for cystic fibrosis. Child life specialists will explain each step in the procedure, using real medical equipment, dolls, books or photos.
“Research shows that when a kid knows what to expect, they’re better able to cope with what’s going to happen, and they’re less traumatized by the experience,” Miller says.
Child life specialists also help kids cope with the stress and anxiety they may feel in the hospital using strategies appropriate for their age and level of understanding. These may include breathing and relaxation exercises, guided imagery or toys that provide distraction. Most recently, the child life team at Rush has been using new virtual reality goggles to engage kids’ senses to help distract them from uncomfortable experiences with needles, such as blood draws and chemotherapy treatment. The goggles can also help young patients cope with pain.
But that doesn’t mean the goal is to prevent a kid from feeling their feelings. “Some people have this idea that child life can come in and make a child not cry during a procedure or come by and make it all better, but that’s not the goal,” Miller says. “The goal is to help the child understand and cope in their own way. Crying is a healthy, emotional expression. We want to empower kids and families to have the tools necessary to navigate the challenges of hospitalization and illness, tailored to their unique circumstances.”
Offering education and emotional support
Since the pandemic began, many kids’ anxieties have been about getting COVID-19, Miller says. To ease these and other worries that young patients may have related to their health or treatment, child life specialists at Rush offer kids ways to express themselves and work through some of the challenges they may be experiencing. For example, they might ask a child to trace their body with a crayon and write their “inside” and “outside” feelings on it, which helps kids reveal their emotions.
Miller’s team also works with children to help them understand a caregiver’s new diagnosis. And sometimes, they have to explain difficult situations to kids regarding the end of life. During the pandemic, this has included conversations with kids when a family member is hospitalized for COVID-19 and needs to be taken off ventilator support. The team also helps surviving caregivers know what to expect from children dealing with grief and loss, and how to best support them during those times.
Reinforcing the value of child life specialists
In recent weeks, the child life team has been training staff at Rush’s mass vaccination events for children on how they can help ease kids’ stress and discomfort while administering COVID-19 shots. A member of the child life team will also be available at many of the vaccination events to support kids and their families.
Through her team’s continued work, Miller hopes to make even more people aware of the important role of the child life services so they don’t disregard their support as just fun and games. As Miller says, “We play with purpose.”