Vulnerable patients

For many children having surgery, going under anesthesia is the moment it gets tough. Psychologist Jill MacLaren Chorney, PhD, of IWK Health Centre in Halifax, Nova Scotia, remembers when a 12-year-old girl with a history of orthopedic surgeries was scheduled for another procedure. She was able to cope with her anxiety in the waiting room. But when she was escorted to the operating room door, she burst into tears and refused to go in.

"Despite all efforts by staff, she continued to refuse, her distress increased and her surgery ended up being postponed," recalls Chorney, an assistant professor in the department of anesthesiology at Dalhousie University and a member of the Complex Pain Team at IWK Health Centre.

While cancelling surgery is rare, such nerve-racking episodes can be as stressful for the surgical team as for the child and his or her parents. Even more important is that preoperative stress can have a dramatic impact on how well a child recovers from the procedure, Chorney says. Some research by anesthesiologists has shown that children who are more anxious before surgery may experience more pain and recovery complications after the procedure and have longer hospital stays.

As she tells anesthesiology residents, "How they go to sleep is often how they wake up."

Chorney's own research, published in Anesthesiology, has shown that reducing children's preoperative stress — by giving them a practice run with an anesthesia mask and educating them about the procedure, for example — can lessen the amount of pain medication they need after surgery and can reduce cases of "emergence delirium," in which a child comes out of anesthesia thrashing, crying or needing restraint.

To improve children's experiences, Chorney and other psychologists have developed research-tested strategies to reduce children's stress and anxiety about medical procedures, including going under anesthesia and having surgery, as well as some uncomfortable and even highly painful tasks, such as having blood drawn, using a catheter, wearing sensors for an electroencephalogram and being treated for severe burns.

"Children's experiences with early medical procedures can really shape their medical experiences for life," Chorney says. "We have the potential to do a lot early on in making these procedures less stressful for them."

Dora in the OR

To help children stay calm in the operating room, pediatric anesthesiologists at Chorney's IWK Health Centre rely on a strategy used by children's hair stylists and parents on long car trips — cartoons.

When the hospital installed state-of-the-art video screens in operating rooms last year so trainees could observe surgeries, Chorney and her colleagues wired the technology so anesthesiologists could use it to show children cartoons while they underwent anesthesia. The cartoons had a dramatic effect on children's anxiety, even on top of tried-and-true techniques used by pediatric nurses and anesthesiologists, such as humor and soothing talk. In Chorney's study, published in 2012 in Anesthesia and Analgesia, she and colleagues found that a quarter of the children who watched a video of their choice showed no anxiety during anesthesia, compared with only 5 percent in the control group. Only 2 percent of children in the cartoon group showed extreme anxiety, such as screaming and crying, compared with about 10 percent in the control group.

In addition, children who chose a cartoon in the waiting room to watch during anesthesia showed no increase or change in their anxiety from the waiting room to the operating room, while children in the control group grew more fearful as they waited.

"These were children who were already getting quite a bit of great interactions from staff, but we added something on that gave everyone something else to focus on," says Chorney.

Lynnda M. Dahlquist, PhD, of the University of Maryland, Baltimore County, is exploring whether video games might also help children cope with intense procedures, such as burn care and bone-marrow aspirations. In a study in press at the Journal of Pediatric Psychology, Dahlquist, along with then-graduate student Karen Wohlheiter, PhD, compared how healthy preschool children fared in two different conditions. One group played a Wii game, such as "Finding Nemo," with their free hand immersed in ice cold water; the other group watched pre-recorded footage of the same game without interacting with it with one hand immersed in ice cold water. Consistent with research that finds that tasks that require more executive cognitive processes are more effective in minimizing pain, the children who played the game showed more pain tolerance. And, it didn't matter how much experience they had with gaming. "It seems to benefit kids from a wide range of ability," she says.

Dahlquist is also testing whether virtual reality helmets that allow children to play video games could help them better manage painful procedures, and which children might benefit most. She is gathering data on the types of games that might be most effective — fast-paced action games or more mellow ones. Her hope is that such games could be particularly helpful for medical settings without a mental health professional on staff to help children cope with their anxiety over a procedure.

"The beauty of an electronic distractor is that you don't need a highly trained clinician administering it," she says. "The game itself is intriguing and engaging."

Making the extreme routine

Children with chronic or life-threatening medical conditions often need more than a temporary distraction: They need help adjusting to frequent, regular medical procedures such as having to catheterize themselves, use a nebulizer or lie still for radiation treatment or an MRI. Helping these children — particularly those who also have intellectual and developmental disabilities — is the focus of the Pediatric Psychology Consultation Program at Kennedy Krieger Institute in Baltimore, directed by psychologist Keith J. Slifer, PhD.

Drawing from pediatric and behavioral analysis research in counterconditioning, differential reinforcement and exposure therapy, Slifer and his colleagues use simulated medical procedures to gradually expose children to the "sights, sounds and smells associated with their medical care." Children may touch and feel the equipment first, then wear it, then use it. Or, they may be rewarded after the procedure with stickers, prizes or other reinforcers as they make progress.

To help children with obstructive sleep apnea adjust to sleeping with a continuous positive airway pressure (CPAP) mask, for example, Slifer and his colleagues first introduce them to the sleep clinic, then have them watch as the equipment is placed on a parent or a doll, then have them put on the equipment a little at a time as they enjoy an activity, such as a cartoon or story. The children do this over and over until they can help put on the mask and fall asleep with it on.

"I've never met anyone who said they like a CPAP machine, but if you make it as routine as putting on their pajamas and pair positive things with it, even young children and those with intellectual and developmental disabilities can learn to tolerate it," says Slifer, who is also an associate professor of psychiatry, behavioral sciences and pediatrics at Johns Hopkins University School of Medicine.

Part of his program's approach includes teaching children coping skills they can use during a procedure, such as controlled deep breathing, visual imagery, or distraction with an activity they like, such as an iPad or video game. They also provide them "break cards" they can give the nurse when they want to halt the procedure briefly.

"Children are surprisingly judicious about their use of the cards," he says. "It can calm them down a lot just knowing that they have that little bit of control."

The team's research, published in Epilepsy and Behavior and other journals, has shown that using behavioral techniques not only increases compliance among these children, it reduces the need for potentially harmful alternatives, such as frequent sedation.

Among the many challenges of this work is that reinforcement isn't one-size-fits-all, says Slifer. One child with severe visual impairment, for example, was unable to tolerate equipment for a sleep study because he wasn't interested in traditional reinforcers, such as stickers or prizes. Eventually, the team found that he liked to throw a ball and hear it bounce off the wall. After that, for every sensor wire of an electroencephalogram they placed on his head, he earned a ball toss.

"One of the cool things about working in this area is that there are endless opportunities for creativity," says Slifer. "If you like to dream things up, the sky's the limit."