Illness, Death and Crisis: Helping Children Cope
Think about the following questions: "What is 2 + 2?" "Spell 'cat'." "What is cancer?"
Dr. David Schonfeld says it is important for children to understand their illness so that they can take an active role in their own treatment.
One of these questions stands out among the others. "There really isn't any underlying educational theory yet about how to teach health," says David Schonfeld, MD, director of the Division of Developmental and Behavioral Pediatrics at Cincinnati Children's. "It's very different from teaching math and reading."
Dr. Schonfeld should know. He has spent the past 20 years researching children's understanding of and adjustment to serious illness and death. He has also developed and studied school-based interventions to promote understanding and risk prevention.
That cancer question might sound like a tough one to tackle, especially in school-aged children. But Dr. Schonfeld has found that children are capable of understanding illness – as well as the concepts of death and dying – at young ages. Why is it important for kids to grasp these ideas? Dr. Schonfeld claims they are more likely to cooperate with treatment if they understand why they're receiving it. With such learning they also are less likely to worry about such things as catching cancer from a friend, sibling or classmate, and are therefore more willing to be a friend with someone with the illness.
Clearing Up Misconceptions
In studies he has conducted on children's comprehension of AIDS and cancer, findings showed that while kids seem to know quite a bit, they tended to have a lot of misconceptions and overgeneralizations. One example: When posed the question, "How do you get AIDS?" some students cited "sleeping together" as a way in which AIDS is transmitted. But when asked for further detail, they suggested "like sharing a bed at a friend's house." So while on the surface it appears they know what they're talking about, the need exists to dig deeper for students' real comprehension of the topic. To fulfill that need, Dr. Schonfeld and his team conducted more than 1,000 interviews of young children and developed and evaluated elementary school AIDS and cancer education curricula that were shown to advance dramatically children's understanding of the illness.
When children become ill, it's important for them to comprehend their illness and its treatment because having an understanding of their situation encourages kids and allows them to take an active role in their own treatment. Dr. Schonfeld asserts that a 6-year-old can understand a diagnosis of acute lymphoblastic leukemia. "It's not much more complicated to explain cancer at a basic level as compared to a common cold," he says. He suspects adults oftentimes dismiss explaining difficult situations (of chronic illness, death, crisis, etc.) because they feel kids are too young to understand, and because these same subjects are hard for adults to cope with. "We don't discuss it with children because we have to put it in simple, stark terms, and we don't want to face it ourselves."
Kids Want to Understand
Not talking about the topic also may bring on the false notion of protecting the child. "Parents want the child to be unaware. But this leads to a situation where the child, who really is aware, doesn't understand, is unable to ask for support and must deal with the situation on his or her own, which is too much to ask of a child," Dr. Schonfeld explains. He emphasizes that, to a degree, children want to understand what's going on, and that the explanations can be simple.
He also stresses that in these situations, listening is crucial. "Physicians don't like to see people suffer, and we have a tendency to reassure and comfort," Dr. Schonfeld says. "But you can't reassure if you don't know what the concerns are." He recommends first finding out what parents and children are worried about before giving too much explanation. "Listen to them and let them guide you in how to form the conversation."
Dr. Schonfeld is the Thelma and Jack Rubinstein Professor of Pediatrics and director of the Division of Developmental and Behavioral Pediatrics at Cincinnati Children's. He also serves as director of the National Center for School Crisis and Bereavement, which is located at Cincinnati Children's.
