Some tips on working with hospitalized children

This is an excellent article by Stephanie Innes of the Arizona Starnet:

advertisementThe adolescent boy is lying on his hospital bed with a wet towel over his eyes, which are burning from a recent chemotherapy treatment.
"Would you like me to bring you anything?" Allison Woods asks the boy, a leukemia patient at University Medical Center who has relapsed after a long remission and is scheduled to have a bone marrow transplant later in the week.
The boy shakes his head no, and sounds like he's crying.
Woods, remaining upbeat, suggests a stress ball.
"Yes," the boy says. "I'd like that."
Woods is what's called a "child life specialist," someone with whose aim is to make the hospital experience for children as pleasant as possible. Among other things, that means asking young patients what they want — whether it's honest information, a stress ball, or a reward for enduring "pokes" — hospital lingo for needles and other invasive medical procedures.
Increasingly, child life specialists are recognized by doctors, nurses and social workers as crucial members of pediatric medical teams. They operate on a philosophy of treating young patients and their siblings with respect and helping them gain a sense of control over what they are experiencing.
Reflecting a national trend, the number of child life specialists in Tucson has more than doubled in the last decade and both Tucson Medical Center and UMC — Tucson's two largest hospitals — plan to add more in the near future as they expand their services for children.
"The unknown is always petrifying, even for us as adults," said Jolene Eggert, TMC's child life manager. "I remember having my tonsils out and just screaming. My mom heard me screaming all the way up the elevator. She wasn't allowed to come with me."
It's different now. Parents and guardians are encouraged to stay with their children as much as possible, as long as the medical situation allows it. And the child life specialists prepare kids by reviewing what is going to happen to them.
While doctors and nurses often have to tell children what is happening to them, child life specialists are able to allow some choice, and in turn pass that information to the rest of the medical team. Is there an arm they prefer to use when having blood drawn? Is there a special toy they want to be there when they wake up from surgery? Do they want to know how the doctor will take their appendix out?
"A lot of control is taken from kids when they are in the hospital," said Woods, one of the six child life specialists at UMC. "This is something they can control. They guide the conversation, and they can refuse me, too."
Teddy bears with tonsils, anatomically correct dolls, visualization and books are all used to prepare kids for needles, ports, tracheotomies and anesthesia masks. Though they aren't invasive, masks in particular can be terrifying for a child who has never seen one and is lying helpless on an operating table.
The child life team invites children to play with medical equipment before they go into the operating room. One day last week, hospitalized children and their siblings at TMC used syringes to squeeze out paint and make art projects.
TMC has a coloring book about a turtle named Tomás who goes to the hospital and is shown under an X-ray and in the operating room. When there's a procedure that requires taking big, deep breaths, Eggert and her team work with kids beforehand by having them blow bubbles and pinwheels.
There are 3,400 active certified child life specialists worldwide — most of them in the U.S. — with most of the growth occurring in the past decade, the national Child Life Council says. The specialists must have a bachelor's degree, typically in psychology, family studies or a related field, complete nearly 500 hours of clinical internships and pass a national certification exam.
"Honesty was not the policy decades ago. Children didn't really have any voice. We big people thought we knew what was best and easiest and it was really what was best and easiest for us," said Linda Throne, director of nursing for women's and children's services at UMC.
"When I first came here 14 years ago, there was one certified child life specialist. There was another person put in that role long ago, before we really understood you need a certain level of education and national certification."
Often when a trauma patient comes in or a pediatric "frequent flier" returns, the doctor or nurse will be asked to "page child life." Medical personnel at UMC have found that when children feel calm and safe, they fare much better going through medical procedures.
"As our population grows, so will the number of child life specialists," Throne said. "They are an integral, respected part of the medical team and a very equal part of the team, too."
Ed Motzkin, whose son, 15-year-old William Motzkin, has had six surgeries at TMC in the past year, said his son often wants to go to the hospital and say hello to the staff, even when he isn't sick.
"He loves them. The child life staff actually develop a friendship with the kids," Motzkin said.
William said that when he missed school, Eggert and her staff coordinated with his teachers to make sure he could continue his studies in the hospital.
"They are really good supporters, and they are really nice," he said. "They would just be cheerful and would really make me laugh. Like if you are down, they have video games."
Both TMC and UMC have big yellow toy chests on wheels called Andrea's Closet. It's a program named for a young Phoenix girl named Andrea Brunk, who died of complications from leukemia in 2002. Andrea's Closet allows children to pick out toys when they have to endure the "pokes" of painful medical procedures.
At UMC, a Wii, televisions, Playstations and game chargers have been provided to the child life program by a local organization called the Kick Cancer for Stephen Foundation. It is named for Stephen Placencia, a Cienega High School student who died of cancer last year at age 17. His parents want to make sure that teens have age-appropriate activities in the hospital — something the child life specialists are working on, too.
"Stephen was a quiet, shier boy. He did appreciate what the child life people tried to do for him — they were always checking to see if we needed anything, if we didn't understand what was going on," Stephen's mother, Francie Placencia, said.
"It wasn't just Stephen — they always made sure our other three children were OK, and offered us resources in the community."
She noticed a difference when Stephen had a surgery in Pennsylvania, and there was no child life specialist offered to the family.
"There was not someone constantly checking, no game room, and no activities," she said. "It's always nice to know you have someone on your side."
Woods seems to instinctively know what her patients need.
She helps Sierra Johnson, a 3-year-old leukemia patient, cut up her sausage and eggs, plays a game of peek-a-boo that sends the toddler into fits of giggles, and then does a painting project with her. Sitting beside Sierra on the bed is a doll that, like Sierra, has a port in her chest with a tube attached to medicine.
At her next stop, she allows a 5-year-old girl with cancer to pick out some stamps from Andrea's Closet because the girl had "a lot of pokes" that day.
She holds the hand of a teen-aged boy with cerebral palsy and then attaches a colorful mobile to the edge of his bed.
After agreeing to getting a stress ball for the adolescent leukemia patient, she offers him several other activities, like movies. He declines. He wants to stay lying down, and his eyes hurt.
"How about a Bionicle, and maybe a GameCube for later?" she asks him.
"OK ... please," he replies.
Woods tries to make sure someone is there for him when his family isn't. He's being encouraged to walk to keep up his strength before the transplant.
"I'll come back later and we can either build the Bionicle or do walks if you are feeling better," Woods tells the boy.
"Yes," he replies. "I'll see you soon."
TMC team focuses on chronically ill children
Tucson Medical Center recently began a team approach to take better care of young patients who are chronically or terminally ill.
The new palliative care program is called Tucson Lifeline for Children — TLC — and is expected to accommodate 250 children per year eventually. So far, 52 have enrolled in the new program, which is headed by Dr. Gina Jansheski.
The children she sees have diseases like cerebral palsy, cystic fibrosis and spina bifida, and often have multiple other ailments, too. The program is part of a growing trend in health care, sometimes called the "medical home," where medical professionals from many disciplines come together to help patients as a coordinated team.
"It's like first-class service for our frequent fliers," Jansheski said. "I get paged when they come into the hospital and welcome them back. They are our special patients."
In addition to doctors and nurses, members of the TLC include child life specialists, dietitians, pediatric pain specialists, music therapists, Spanish-language interpreters, massage therapists and respiratory therapists.
Jansheski, who is director of TMC's pediatric palliative care and hospice, begins by spending about two hours with each patient's parent or guardian. She takes an inventory of the child's needs and the family's needs, too. The categories she covers include physical, spiritual, cultural, psychosocial, and advanced care directives.