Johns Hopkins Magazine -- November 1999
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When it comes to medical care, what kids don't know can hurt them--emotionally, that is. Child life specialists help ease kids' fears by preparing them for what's to come.
Opening photo: Child life specialist Cappe Thompson "rehearses" a medical procedure with patient E Wayman.

H E A L T H    A N D    M E D I C I N E

Serious Play
By Sue De Pasquale
Photos by Mike Ciesielski

In exam room 2 of the outpatient urology clinic at Johns Hopkins Hospital, 5-year-old David sits in a wheelchair playing with a muslin doll. At least, that's what it looks like he's doing. The doll has two plastic tubes snaking out from a bandaged area on its groin--tiny replicas of the two tubes that extend out of the fly of David's own jeans. David has given the doll a name, "David," and assigned him an age, 6.

"David has a tube that has to come out," says child life specialist Gina Fortunato, who is talking to the real David, who sits beside her. She speaks softly, her long, curly black hair spilling around her shoulders, as David's mother looks on from a seat a few feet away.

"I'll pull it out!" David offers, and begins to remove the adhesive tape holding the tube on to the doll.

"What should he do to help while you take it out?" Fortunato asks. "Should he wiggle around a lot?" She wildly moves the doll's arms and legs around. "Does that make it easy?"

David shakes his head. "No, then you have to do it again," he says. He thinks for a second, then says, "I know. We can make him go to sleep."

Fortunato explains that the anesthesia or "sleeping medicine" David had for his bladder augmentation surgery three weeks back really isn't necessary for this minor procedure. David takes another moment to ponder the situation and then offers, "Maybe people can hold him."

A few minutes later, urology resident Stephen Jackman comes into the examining room to check David's tubes. The exam doesn't go smoothly. When Jackman says that David will have to get up on the examining table, the little boy begins to cry. Fortunato hops up on the table and sits behind David, cradling his head and neck as Jackman gently lowers the prone boy's pants and checks his surgical incisions. David's crying escalates. "I want to leave!" he shouts between sobs.

As the doctor and mother quietly confer about David's progress, Fortunato leans over the crying boy and gently begins singing the Barney theme song. "I love you, you love me, we're a happy family..."

Before the afternoon ends, Gina Fortunato will help 15 more young urology patients like David prepare for anxiety-producing exams and uncomfortable, sometimes painful, procedures. And in departments throughout the Johns Hopkins Children's Center--from the neonatal intensive care unit to adolescent psychiatry--her colleagues in the Child Life Department will do the same.

Some, like Cappe Thompson, who works with inpatients on the school age wing, may have several days to build a relationship with their patients--to draw "pain charts," make Jell-O, chat with siblings, feed "Mc Kenzie" the white and gray rabbit, and ultimately provide the coping skills they'll need during their hospital stay and beyond. Those like Fortunato, who work with outpatients, may have anywhere from 30 seconds to an hour to meet the child, talk through the imminent procedure, and "practice" what the child will do to get through it. For some kids, deep breathing and being "loose" is a help. For others, it's blowing bubbles or focusing on a "magic wand."

Children's Center director George Dover says he's come to depend on the child life team at all stages of care--"from the first time [families] come in the door, to when the family needs a reassuring moment, to help with delivering bad news, to making sure whatever treatment we use is understood by the child and family."

Agrees John P. Gearhart, director of urology, "Child life specialists are an unbelievable adjunct to our work--and just as much a part of the team as the nurses and surgeons." Noting the skill with which Fortunato counsels young patients and their parents and interacts with the other members of the urology staff, he says, chuckling, "We wouldn't trade Gina for two first round draft choices and a bonus!"

Toddlers love bubbles, says Fortunato. She uses the activity to help young kids relax during their pre-exam wait.
Child life got its start at Hopkins in 1944 as a "play program"- -one of the first programs of its kind in the nation.

At that time it was not unusual for children to spend weeks in the hospital for routine surgeries, and for kids with chronic illnesses, stays could stretch on for months. The emotional scars from these hospital experiences often lasted long after the physical ones had healed. After all, the hospital could be a very scary place. Away from their families (at Hopkins parents could visit only on Wednesday evenings and Sunday afternoons), children faced a bewildering array of tests and treatments, with little explanation--much less preparation--for what was happening to them.

Enter Miss Onica Prall, of the Hood College Child Development Department, who was looking for a volunteer venue through which to help the war effort. In 1943 she set up a playroom in what was then Hopkins's Harriet Lane Home for Children, and began child development training among nurses. Pediatric patients now had a "home away from home"--a place where they could come and be kids again, a safe haven where no one would stick them with needles or conduct an embarrassing exam. The playroom was an immediate hit. The following year a permanent play program, financed by the Women's Board of the hospital, was established and the first trained staff member, Mary Caulkins, was hired.

Over the years, the field of child life has broadened to include more than just play. Today's child life specialists, many of whom have master's degrees in early childhood development, are professionally trained to provide "psychological preparation" to young patients before they undergo medical procedures, and "expressive play" afterward. And the child life brand of counseling/play extends beyond the individual patient to encompass the whole family. When a young cancer patient is terminally ill, for instance, childlife specialists work with siblings and parents--as well as the child--to help them cope with the impending death.

"When you see child life in action, you have to say, 'This makes sense. Why doesn't every hospital do it? Why don't we have it for adults?'" says child life director Jerriann Wilson, who began her work at Hopkins in 1962. Today she oversees a staff of 20, 13 of whom are child life specialists. (The remainder include producers and production assistants for the Children's Center's closed circuit TV network, a special education teacher, and others.) The Hopkins program also relies heavily on volunteers-- currently about 100 a week.

Wilson and her staff make sure there are plenty of opportunities for good old-fashioned fun. Teens on the 9th floor adolescent wing can head to the recreation room to play pool, use the computers, or listen to CDs. Younger patients use their 4th floor playroom to do painting projects, mold Play-Doh, or make pizza. Each Wednesday at 2:30 p.m. there's "Hospital Bingo"--the most anticipated event of the week. Kids who can't attend in person tune in from their beds via closed-circuit TV. The big draw: the winner of each round gets to choose from a toy-laden prize table. And at Christmas, there's the eagerly awaited "trip" to the North Pole, sponsored by Continental Airlines. Fifty children and their parents board a Continental airplane at BWI and "fly" north (the pilot actually taxies around the runway for half an hour) before "landing" at the Pole (Gate 6) and receiving presents (donated by Continental employees) at a party with Santa.

Many play activities are guided toward "expressive" outcomes. Thompson has her young patients make a paper chain that hangs on their door. On each strip they write a question or comment they have for their doctor (i.e., "please let me get some sleep") or a concern about being hospitalized. "It's therapeutic for them to get these things out," she says. She also encourages the kids to handle and chat about the various pieces of medical equipment they'll be encountering: anesthesia masks, IV lines, catheter bags, casting material. And the faceless muslin doll is a playroom mainstay. The dolls come in different "skin" tones, allowing the children to use markers and yarn to create the doll in whatever image they choose. Often, as with David, they wind up creating miniature versions of themselves, then "rehearsing" procedures or tests they face.

A companionable activity: Molding clay beads before surgery affords Kari Main a chance to ask questions or share concerns with Fortunato.
Therapeutic play like this enables children to give voice to their concerns--concerns that vary greatly by age and developmental level. "There are no 'recipes,'" notes Fortunato. A 10-year-old may ask, "How do you know I'll wake up from the anesthesia?" for instance, while a 3-year-old may wonder whether being restrained on an examining table is a punishment for something he or she has done. Preteens agonize over the teasing they'll face at school (i.e., "You're wearing diapers! Only babies wear diapers!"). Fortunato brainstorms with them to come up with an arsenal of responses, then encourages them to practice these responses. ("I wish my leaky bladder was something I could control," or, "The doctors are helping the skin on the outside of my bladder to close.") "Giving them one option is not enough," she's found.

Whenever possible, Thompson and other child life specialists include siblings and parents in these play activities. "Hospitalization disrupts families," explains Wilson, "so anything you can do to give the children and families things they can do together--to emphasize the positive parts of the hospital experience--is really beneficial."

While the first child life program in the nation was established in 1922 at C.S. Mott Hospital in Ann Arbor, Michigan, the field did not really take off until the 1960s and 1970s. Today there are programs in more than 380 hospitals in the U.S. and Canada, according to figures provided by the Child Life Council (CLC). Most programs are in children's hospitals and university-affiliated academic medical centers.

And increasingly, child life specialists can look for job opportunities outside the hospital setting. "In addition to rehabilitation centers and hospices, there are now child life specialists in dentists' offices, funeral homes, sexual assault centers--even in software and toy development," says Deborah Brouse, executive director of the 1,600-member Child Life Council.

The recent managed care-driven push toward cost-cutting and consolidation has forced some hospitals to cut back on their child life programs, says Brouse. But there are signs that the trend is turning around.

"After a period of feeling pinched, the number of listings in [our] job bank has fairly significantly increased this year over last year and the year before. It's roughly double what it was last year," she says. Anecdotal evidence suggests, she says, that "some programs that had cut back are now reconsidering. They're finding that it is an essential. It's not a frill."

In fact, the American Academy of Pediatrics is slated to vote this month on a statement declaring that "child life services should be valued and reimbursed by insurers, both public and private," and that such services "when available must be provided to every child regardless of reimbursement." Wilson says the statement has strong support within the AAP and she expects it to be approved. "Insurers need to recognize the fact that the cost of child life is unique to a children's setting, and that it has to be built in," she says.

Child life supporters, like Allen Walker, medical director of the Children's Emergency Department at the Children's Center, believe that child life services boost the bottom line by increasing efficiency. He's found that with asthma, for instance, children who receive preparation for their emergency care less frequently go on to require inpatient admission; because they are calmer, he and his staff can make more accurate assessments.

Concurs Charlene Baumgardner, nurse manager in the center's pediatric emergency room, "As nurses or physicians, we don't have the in-depth time to spend helping a child to relax and understand what's going to happen." While a physician may explain a procedure once, children often need to hear an explanation several times in order to absorb it. It inevitably takes longer to do a procedure--whether sewing stitches or taking an X-ray-- when a child needlessly becomes hysterical or refuses to be pried from Mommy's arms, Baumgardner says. She's found it's much better for a child life specialist to take 20 minutes up front to go over the procedure with the family, and teach the child deep breathing or some other coping skill.

There's also the important issue of recovery. Says the CLC's Brouse, "Children tend to get well faster if their psychological needs are taken care of. Mental health is very much related to physical health. Your emotional state can help your healing."

The adolescent recreation room provides a relaxing haven for teen patients, says child life specialist Davis Weems (far left).
In 1988, a quintet of researchers, including Hopkins child life training coordinator Joy Goldberger, published results of the first study aimed at assessing whether a child life program makes a positive difference for children and parents. For the test group, the researchers looked to patients in Phoenix Children's Hospital in Phoenix, Arizona. The researchers compared psychosocial and medical outcomes in 68 pediatric patients (ages 3 to 13) who had participated in a child life program, with a similar group of 160 patients who had been in the hospital the year earlier, before the program had been put into place.

The results of the study: children in the experimental program scored significantly better on 18 of 21 "outcome variables" than did the control group who did not participate in a full child life program. Kids in the experimental group, for instance, showed a better "posthospital adjustment rate" 10 days after recovery. (They reported fewer nightmares, for example.) And while there was no significant difference in parental anxiety during the hospital stay, parents of kids in the experimental group were significantly less concerned about their child's emotional state at the time of discharge.

Says Goldberger, "It's very easy when a child is sick for a parent to say, 'Oh my gosh, now we all have cancer.' Or, 'Now we all have renal disease.' That becomes the defining part of the family." The child life specialist is there to underscore the child's resilience--to assure parents that in between medical crises, their child can still have fun playing Monopoly or doing Mad Libs. "The ability to move on is what we want to foster," she says.

At the Hopkins Children's Center, which trains child life interns from around the world, half of Wilson's 13 child care specialists today work in outpatient settings. "That's sort of where the action is," she says, noting the trend toward shorter hospital stays and increased use of outpatient services. On her wish list: to find the financial support to have a child life specialist on call in departments like pediatric orthopedics and radiology-- departments that routinely do procedures that can be particularly unfamiliar and frightening to young patients (think MRI).

Wilson is not sure how tough a sell it will be. She says that she and her staffers are treated as valued members of the medical team--a situation that child life specialists at other hospitals don't always enjoy. But "that doesn't mean we don't struggle [financially]." She mentions a hospital budget meeting set for the following day, when she will be pushing to beef up weekend child life coverage--not an easy proposition when budget administrators are divvying up a limited pie of funding for physician and nursing care. "Child life is not as easy to justify," she says. "It's not automatic."

Nevertheless, she's convinced it's essential. She's fond of quoting Barbara Brown, a mother whose young son was seriously hurt in an accident. Said Brown, shortly after the boy's discharge from the Children's Center, "The medical staff took magnificent care of his body, but it was the child life program that helped heal his soul."

Perhaps the most difficult part of Gina Fortunato's job in the outpatient pediatric urology clinic and presurgical area is preparing young patients to undergo a procedure known as a VCUG (voiding cystourethrogram). Children dread it, but it's the only effective way to diagnose urinary reflux, a condition in which urine can back up into the urethra or even the kidneys. Boys and girls who have the condition often end up having to endure several VCUGs over the course of their treatment.

The test involves lying in a "frog position" (soles of the feet together, legs spread open) on an imaging table, then being catheterized. Cameras move in within inches, and X-rays are taken as fluid is drained into the bladder; the child is asked to urinate, so that more X-rays can be taken to capture the voiding process. Whatever the age, the test is an upsetting one; toddlers who've just mastered potty training can't imagine why mommy is now asking them to "pee" on a table. School-age kids who've been repeatedly counseled by Mom and Dad about keeping their "private" parts "private" now find themselves feeling on display. Teens, embarrassed about their bodies anyway, are loath to be put in such a vulnerable position. In the best possible scenario, the procedure can be completed in 20 minutes. But when children become agitated and fight off the catheter, then hold back on urinating, it can stretch on for hours and leave everyone--child, parents, medical specialists--exhausted and in tears.

Among teeneagers, concerns about body image are paramount, says Weems.
And that's exactly what Fortunato wants to avoid. So whenever possible, she sits down to talk or play with the patient before the VCUG is undertaken. They discuss the procedure and coping options: deep breathing, for instance, or creating a fanciful story to tell aloud during catheterization.

Fortunato often finds that a child's biggest concerns are not those she would have anticipated. Take the case of 10-year-old Jenna (not her real name), who arrived at Hopkins for treatment after having had six VCUGs. On their first visit, Fortunato let Jenna do all the talking. "I listened to how 'awful' things were and was the first person, according to her, who did not say 'I know,' or 'It was not that bad,'" says Fortunato.

One surprise: the part Jenna found hardest was the two-hour car ride to Hopkins. She couldn't stop replaying the past VCUG experiences in her mind. Together the two worked out a coping plan for the ride; Jenna thought about her favorite tree in the backyard--how relaxing it felt to sit peacefully in the branches and listen to the birds sing. During another conversation, Fortunato learned that Monica was angry at her parents for moving the family to England each summer. Next visit, Fortunato brought in photos of London so the two could talk about the city. "Leaving the unit to look at them was the most important thing we could have done together that afternoon," Fortunato says.

No matter how well or badly the VCUG--or any procedure--goes for her young patients, Fortunato tries whenever possible to meet up with them afterward and discuss how they felt things went. Frequently she follows up with notes and letters of encouragement. Her goal, she says, in fact the goal for all child life specialists, is to inculcate a feeling of mastery--to help children create a manageable memory of their medical experience that they can call upon for confidence in the future. Ideally, children who don't grow up fearing the hospital will become adults who don't put off diagnostic care (like mammograms or colonoscopy) that could save their lives.

Says Fortunato, "I'm always thinking about what happens if this child [one day] needs stitches in the ER. How did today prepare him for that?"