Helping Kids Cope with Serious Medical Problems
Nemours Enterprise
Tuesday, September 09, 2008 @ 12:18 PM EDT
by: Christine Facciolo
Special to The News Journal
Many child life specialists have a background in early childhood development and psychology
When Zackarey Turner wound up in the hospital last Christmas, he was not happy.
Like most kids, he didn't like being sick and having to be separated from the people and things he loved. Unlike most kids, Zack was battling two life-threatening conditions: a mass in his chest that was crushing his windpipe and leukemia.
When he woke from a medically induced coma, he found himself tethered to a respirator, unable to move.
"He was petrified because he was pretty much restrained to the bed so he wouldn't pull the breathing tube out of his throat," said his mother, Kelly, 32, of Newark. "He had a look of terror in his eyes."
Frustrated, he began to act up with the doctors and nurses.
But Beth Carlough managed to allay Zack's fears. Carlough is a child life specialist, a vital member of the health care team, who reassures children by explaining why they are in the hospital and the realities they face.
"Hospitals can be scary places," said Carlough, 50, one of six child life specialists at Alfred I. duPont Hospital for Children, in Rockland. "The fear of the unknown is often far worse than knowing the truth. We look at the development level and what the concerns are for that developmental level and how that developmental level processes information."
Child life got its start when a playroom was set up at a Michigan hospital in 1922, a time when it wasn't unusual for children to spend weeks in the hospital for routine surgeries and chronic illnesses. The playroom was an immediate success and the concept quickly spread, but most programs weren't taken seriously.
Child life came into its own during the 1970s when research began defining the theoretical basis of the work. The number of programs grew rapidly.
Today, there are more than 3,000 certified child life specialists worldwide, according to the Child Life Council. In Delaware, in addition to those at duPont Hospital, Bayhealth Medical Center has one full-time and two part-time specialists based in its pediatric unit at Kent General Hospital, in Dover.
Despite the growth in its ranks, child life is a little known specialty. Carlough admits that one of the most challenging aspects of her work is educating people about the role she and her colleagues play in pediatric and adolescent medicine. "People think we just play games," she said.
Many practitioners, like Carlough, have a background in early childhood development and are trained to provide psychological support for children undergoing difficult medical procedures.
"Sometimes we do something as simple as deep breathing exercises or play games like 'I Spy' or 'Where's Waldo?' to divert their attention during a procedure," she said.
In Zack's case, Carlough used a technique called guided imagery to mentally transport the child to his favorite place, the beach. "She would talk in great detail until you could feel the sand between your toes and the hot sun beating on you," Zack's mom recalled.
Activities like the tower-building game Jenga can be turned into therapeutic play when thought-provoking questions are written on the blocks.
These activities help the child life specialist identify and address the child's concerns, which vary by age and developmental level, Carlough said. Babies who are just learning to crawl don't like being restricted. Preschoolers who are just starting to do things on their own need to be able to make choices. School-aged children may fear mutilation, and some have to be convinced that they still have a limb inside their cast. Teens have a need for privacy and fret over being separated from their peers.
Carlough also encourages patients to handle and become acquainted with the various pieces of medical equipment they'll encounter during their hospitalization. As children learn about the procedures, they get to "practice" on a puppet, doll or stuffed animal.
"By observing we can correct any misconceptions or just give children some mastery over what they've been experiencing," Carlough said.
Still, there's plenty of time for good old-fashioned fun that just lets kids be kids. The hospital's activities center is always open. In an area reserved for their use, teens can play pool and air hockey. Younger patients can do arts and crafts, play board and video games and show off their culinary skills in the kitchen.
"It's a place where kids and their families can have some normal time," Carlough said. "It's most people's favorite place in the hospital."
Child life programs do much to help young patients cope during a difficult time, but Carlough and her colleagues often find themselves acting as surrogate parents to the entire family.
"It's such a horrific experience in your life that nobody's prepared for," said Turner, who also has a 4-year-old son. "But to have someone to talk to who's not a doctor is very comforting and soothing at your greatest moment of despair."
Zack is equally impressed. "He told me, 'I really like that woman, Beth,' " Turner said.
If a child is terminally ill, the child life specialist works with the parents and siblings as well as with the child to do some legacy-building and help the family cope with the impending death, Carlough said.
"Some children like to write letters or wrap future gifts for their family while others like to do scrapbooks," she said. "For the parents we do memorial hand- or footprints."
Child life supporters are quick to recognize the unique contribution these specialists make to children's health care.
"The child life specialist fills a gap that no one else in the hospital fills," said Dr. Jonathan L. Powell, pediatric oncologist at duPont Hospital. "Doctors and nurses are, of course, interested in helping children to adjust to their care, but are primarily focused on planning and carrying out the medical aspects of their care. Child life specialists are able to focus on children -- either in times of stress, such as during a procedure, or just during their hospitalization to make sure they understand what is happening to them and to give them an outlet to deal with the difficulties of hospitalization."
While most child life specialists work in hospitals, an increasing number are found elsewhere.
"We're seeing child life specialist in programs in places like rehab facilities, schools, dental offices, camps, court systems, funeral homes and hospices, so I think we're seeing it really evolve to meet the needs as health care evolves," said Barbara Gursky, immediate past president of the Child Life Council and director of the child life program at the Bristol-Myers Squibb Children's Hospital at Robert Wood Johnson University Hospital, in New Brunswick, N.J.
Gursky said that while most child life specialists have anecdotal evidence that children recover more quickly when their psychological needs are met, more research needs to be done to support their observations.
Carlough said she hopes to instill in her young charges a lifelong appreciation for the medical profession. "Even if a child comes to the emergency department for something elective and simple, it's going to affect their next wellness check-up," she said. "So it's definitely one of our goals to help it be a positive experience so that they're not fearful of medical treatment in the future. It's a lifelong thing."
FOR MORE INFORMATION
Child Life Council: (301) 881-7090 or www.childlife.org
modified: Wednesday, September 10, 2008 @ 09:17 AM EDT
created: Tuesday, September 09, 2008 @ 12:15 PM EDT
About Nemours
Nemours, one of the nation’s largest pediatric health systems, is dedicated to achieving higher standards in children’s health. Nemours offers an integrated spectrum of clinical treatment coupled with research, advocacy, and educational health and prevention services extending to all families in the communities it serves. Starting with Alfred I. duPont’s bequest over seventy years ago, Nemours has grown into a multi-dimensional organization offering personalized clinical and preventive care focused on children.
Nemours owns and operates the Alfred I. duPont Hospital for Children in Wilmington, Delaware and major children’s specialty clinics in Delaware (Wilmington), Florida (Jacksonville, Orlando and Pensacola), Pennsylvania (Philadelphia and Bryn Mawr) and New Jersey (Atlantic City and Voorhees). Having recently received preliminary approval from the State of Florida, Nemours will establish a new full-service children’s hospital as part of an integrated pediatric health campus in Orlando. KidsHealth.org, the world’s most visited pediatric health care Web site for parents, kids and teens, is a project of Nemours.
Nemours employs over 4,400 individuals, including 430 pediatric physicians, specialists and surgeons who cared for approximately a quarter of a million children in 2007. The organization’s goal is to align with parents, physicians, community leaders, children’s advocates and elected officials to ensure optimal wellness for every child. Additional information about Nemours can be found at www.nemours.org.
