Talking to Children When They’ve Been Diagnosed With Cancer

As a nurse practitioner in our Children’s Center for Cancer and Blood Diseases at Children’s Hospital Los Angeles, families often ask for advice on how to talk to their children when they are diagnosed with cancer. Many parents feel that they are protecting their children if they don’t tell them about the diagnosis, but kids always know there is something wrong.

The most important rule: Never lie or withhold the diagnosis from a child. By telling the child early on in the diagnosing stage, you build trust and allow him or her to feel included. How you tell children and how much information to provide depends upon their age.

All children need to know the following:

• The name of the cancer, such as medulloblastoma or leukemia
• The part of the body where the cancer is located
• How it will be treated
• How their own lives will be affected

Other information is best presented based upon their developmental level.

Infant to 3 years

• Use simplified words. At this age, kids cannot understand the concept of cancer. Use words like “sick,” but don’t avoid the word cancer or the name of the tumor.
• Children will be most afraid of medical tests. Reassure them and plan to have a parent stay with them if possible.

Ages 3 to 7

• Use simplified words to explain the diagnosis and procedures. For example, instead of using the word “chemotherapy,” say “medicine to get rid of the cancer.”
• Reassure children that they are not responsible for the cancer, even if they don’t ask.
• Be honest if a procedure is going to cause pain, but assure your child that everyone is going to do the best they can to reduce pain.
• If a child is hospitalized, remind him or her that it is not permanent.

Ages 7 to 12

• This age group is capable of understanding a more detailed explanation of cancer. They are more likely to understand that they need to take medicine and go through treatments to get better.
• Be honest about treatments and sources of pain, assuring them that whenever possible, caregivers will do whatever they can to reduce pain.
• Be aware that they may hear from other sources (like school friends) about cancer. Encourage them to talk to you if they have questions.

Teenagers

• Teens can understand a more complex explanation of cancer and may have many questions.
• They will be most worried about how treatment will affect their daily life, school, sports, friends, etc.
• They may be concerned about how the treatment will make them different than their peers or change their appearance (losing their hair, losing weight). Be honest about the side effects of treatment.
• They may want to be involved in treatment decisions to help them feel in control during a frightening time.

General tips

• Plan what you’re going to say to your child—even write it down—and practice if necessary.
• Use a calm and reassuring voice when talking with the child.
• It may be helpful to have another person with you when you talk to your child. This may be another family member or a member of the treatment team.
• Be open and honest with your child and encourage him or her to ask questions.
• Share your feelings and encourage your child to share feelings as well.
• Be honest about the treatments that will be needed, including the possibility of pain and expected side effects.
• Try to maintain a routine for the child and the rest of the family.
• When possible, try to give the child choices and an opportunity to feel in control. Discuss ways to do this with your medical team.
• Continue to keep an expectation for behavior, including setting limits.
• Normalize their feelings. Tell them it is ok to be scared, sad or angry and the parent should be honest about their feelings as well. We don’t tell them it’s going to be ok if we don’t know it will. We tell them we are going to do everything possible to get rid of the cancer.
• Reassure the child that he or she did not cause the cancer, and it is not contagious.
• Encourage children to find a way to stay connected to loved ones and friends. This can be through technology or letters and cards.
• Seek support for both you and your child.

As a parent, talking to your child about a cancer diagnosis can be overwhelming. Be sure to reach out to the treatment team for support services available to you at the treatment center or in your community.