An increasing number of pediatric care facilities employ child life specialists—trained, certified professionals who focus on young patients’ experiences and feelings while the doctors and nurses focus on treatment. Among other roles, they provide comfort or distraction as the child awaits a needle poke, lumbar puncture, an MRI scan or other procedure.
The child life profession has been around for a century, but for most of its history, it has been associated with pediatric cancer wards. “Today we can be anywhere in the hospital system and in pediatric offices,” says Kelly Beck, senior manager of national programs at the Hope for Henry Foundation.
Blair Hammond, MD is the co-founding director and director of medical education at the Mount Sinai Parenting Center and associate professor of Pediatrics at the Mount Sinai Hospital in New York City. She says, “Child life is an invaluable part of pediatric care. The time spent engaging children in being children, allows for us to support the entire patient and family, and not just see a diagnosis or treatment plan.”
The Youngest, Most Vulnerable Patients
Charli Nobles is on the infant-toddler team at Children’s Specialized Hospital in New Jersey. Most of her patients have never known the outside of a medical facility. They come from pediatric intensive care or neonatal intensive care units, and some need to be admitted repeatedly over a period of years. In many cases, parents have used up all their paid leave and need to be back at work. They often live too far to visit every day, so Nobles supplies affection, plays and reads picture books. “Babies like to have someone to hang out with,” she says.
Nobles comforts them before and after procedures, and she gets to know them like nobody else. When they are released, she can show parents what calms them down. She is also cognizant of her patients’ brothers and sisters. In place of visits, which have been restricted because of Covid, Nobles helps the family make photo albums to help older siblings feel connected to these medically fragile babies. “It can be really confusing for them,” she says. “They were told mom would be coming home with this baby,” so I try to give them a glimpse of what life is like here.”
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“Developmental milestones will look a lot different for our kids,” Nobles says. “Some of our one-year-olds might be at the six-month level.” Given the isolation of the hospital environment, speech and language development are always a concern. One patient, for example, “had been tube fed her entire life but was cleared to eat by mouth at about two years old. She had been in the hospital the vast majority of her life and has not had any opportunities to see other people eat. At home, she would have seen her family sit around the table and eat together, but in the hospital, that just wasn’t part of her life.”
Injections are a fact of life, thanks to CDC-recommended vaccinations, but as many as a quarter of us have trypanophobia—fear of needles. Parents may think it’s best to let children be surprised by the jab and to console them afterwards with a Little Mermaid Band-Aid, but “you can only surprise a little kid so many times before they catch on,” says Carolyn Schneiders Fung, director of national programs with Hope for Henry. “Unlike unexpected stress, expected stressed can be managed.”
“When I began working at Children’s National in Washington, D.C. in 2012,” says Fung, “the child life team was training the entire hospital on how parents could hold their child in a safe and loving way during a procedure. As a new parent, I spent time looking for a pediatrician office that also used positions of comfort for lab draws and vaccinations.”
👉 Slideshow: Comfort Positioning (Children’s Hospital of Philadelphia)
Fear of personnel in white coats wielding syringes can persist into adulthood, making preventable conditions more of a threat than necessary. According to research commissioned by Hope for Henry,
- 55% of parents say their child is afraid of needles or of getting shots
- 24% say they have delayed getting their child vaccinated due to their child’s fear of needles
- More than 1 in 3 parents (37%) have a fear of needles, and 50% of these parents said that fear makes them less likely to get their child vaccinated
Hope for Henry’s Beck elaborates on the complexities of helping the youngest patients undergo procedures with the least stress and anxiety. “They need to understand what’s going on, in an age-appropriate way, and to develop coping skills.”
The Future of Child Life
As telemedicine spreads, a trend accelerated by the pandemic, child life specialists are innovating to keep pace. Project Sunshine’s TelePlay connects volunteers and patients virtually. “When in-person interactions aren’t possible, these virtual connections mean so much for children and their families,” says Meg Kellett, Project Sunshine’s director of pediatric experience—a child life specialist with experience at Memorial Sloan Kettering and Cohen Children’s Medical Center. Clarifying that TelePlay provides recreational play, which differs from the therapeutic play that child life professionals deliver, Kellett says the program supports hospital staff so they can attend to medical interventions. “In any environment, she says, “we work in support of the developmental needs of children.”
Hope for Henry has developed an incentive program to reward kids for undergoing uncomfortable procedures and to instill a sense of accomplishment. Children earn Hope for Henry Bucks, which they earn and exchange for experiences and gifts that motivate them to comply with treatment regimens. The result: 95% have a better overall patient experience.
Note: both Hope for Henry and Project Sunshine have been clients of the writer.
Early Learning Nation columnist Mark Swartz writes for and about nonprofit organizations. Author of the children's books Werner Herzog Eats His Shoe, Lost Flamingo, Magpie Bridge and The Giant of the Flood as well as a few novels, he lives in Takoma Park, MD, with his wife and two children.