Toddlers know they are ill, but they may not understand why they need to endure multiple needle sticks and other painful procedures. Teenagers may worry about how cancer or its treatments affect appearance and peer relationships. The variability makes treating distress in younger patients particularly complex.
Even screening can be more of a challenge. Children are not going to fill out a questionnaire, and parents may have a hard time gauging a child’s emotional state. They are not little adults.
"Normally, what parents say to us is, 'My child is becoming much too quiet,'" says James Zabora, director of the Life with Cancer education and support program based in Fairfax, Va. "Parents see a change, and they don't understand it. Those are the kinds of changes that indicate to us something could be going on."
Once distress is identified, medical professionals and parents have to find unique means of reducing and treating it, both during the child’s cancer treatment and after. One study found that children who were distracted by video games, bubbles and other methods during a painful procedure were less distressed. Studies have also suggested that animal-assisted therapy and music might be beneficial to children. "Children need unique ways to try to express themselves," Zabora says, such as playing, drawing, even acting out make-believe fantasies.
And it's important to not assume the distress goes away once cancer treatment ends. Although most children tend to adjust psychologically, some may experience distress for months or years, particularly if they have noticeable disfigurement and scarring from the treatment, according to a study published last year in the Journal of Clinical Oncology. Former pediatric patients who were left with scars or disfigurements on their head, neck, arms or legs—visible places on the body—had about a 20 percent higher risk of depression than siblings who were not scarred.
Some aspects of cancer care might be particularly hard on adolescents and young adults because their treatment and its aftermath can affect their relationships with friends and classmates during a time of key social development. To that end, teens with greater family and social support report feeling less distress.
Social media has come to play a distinct role in helping adolescents and young adults overcome distress. For example, Planet Cancer, an online community founded by a young adult cancer survivor, has thousands of participants (planetcancer.org).