In the book "In Sickness and in Play: Children Coping with Chronic Illness," author Cindy Dell Clark, assistant professor of human development and family studies at Penn State Delaware County, interviewed children ages 5-8 in their homes, instead of at clinical settings, such as hospitals or doctor's offices. By studying children on their own turf, she found that children use the power of imagination and play to cope with the everyday stresses of chronic illness. Clark calls such therapeutic play "Imaginal coping."
Imaginal coping pervaded the lives of the asthmatic and diabetic children Clark studied. Children used play to feel safe, such as a boy with asthma who imagined that superheroes would save his life, when very ill. Just as in the fictional story of the Velveteen Rabbit, children become attached to toys, blankets, and even bed sheets, which they envision as sources of solace and reassurance. Adults need to be aware of how children cope, if only to avoid disrupting it, she said.
"Play is a way for kids to express their feelings in a tangible form they can manage even at a young age. Play allows members of a family to interact, and to sustain shared ways of understanding illness," said Clark. "Even if play seems without direction or goal, it can bring about community and relief for a family and a child who are coming to grips with illness." The book also has many other examples.
"My breathing machine takes ten thousand years. That's how slow it seems to me," said one young asthma sufferer. "Sometimes, I play games when I do my breathing machine. I pretend I have a friend who is a dragon, and the dragon breathes smoke. You know the steam coming from the machine? That's dragon smoke. Another game is, I have a toy airplane. I fly my airplane through the steam. I pretend to fly away, to a place away from this. That's really fun to pretend, getting up and away."
A young diabetic recalled: "I'm so sick of the kids at school asking me questions. I want to get on the loudspeaker just one time, and yell to everybody one time and have it done. " 'Listen,' I would yell. 'This is why I have to have a snack, and test my blood and get a shot and everything else. It's because of my diabetes. Stop asking me, okay?' "
While being pulled out of the classroom for diabetes shots is an example of an everyday situation that can cause stress for a sick youngster, Clark said not being able to let loose on special occasions or holidays can be very distressing for chronically ill children.
"I can bake a sugar-free birthday cake, but as far as I'm concerned, Halloween is the dreaded holiday above all others," said one parent describing the dilemma in the book. "I could buy sugarless candy for Easter, and at Christmas the kids get toys, not candy. But at Halloween, he wants to go trick-or-treating."
One reason Clark wrote the book was to remind adults – including parents and medical care providers – of the therapeutic power of the imagination. Biomedicine, in explaining illness and treatments, tends to concentrate on the empirical, physical domain. But children are more poetic and less literal, commandeering story and play to approach illness.
Clark, who had an older brother who suffered from childhood asthma to whom her book is dedicated, admitted that her research was difficult at times.
"This was a difficult book to write, especially since the stories of the children were often heart-tugging, but I am hopeful that the information I have put forth will help families currently dealing with diabetes and asthma to prepare for the trying times ahead of them," the Penn State researcher said. "We can all take inspiration from how children made the best of the cards they'd been dealt, how they sustained their spirits and playfulness.
"These diseases have impacted the lives of many innocent children as well as adults, and the sooner we start taking them seriously and working together toward better treatments and perhaps an eventual cure, the better off we'll all be," said Clark.
"In Sickness and in Play: Children Coping with Chronic Illness" is published by Rutgers University Press. Clark also is author of the book, "Flights of Fancy, Leaps of Faith: Children's Myths in Contemporary America," an exploration of Santa Claus, The Easter Bunny, and other myths revered by children.