OSF Children's Hospital

Talking With Your Child About Cancer

To tell or not to tell

Sometimes parents or caregivers are fearful of telling their child about cancer because they fear the child will be overwhelmed. If a child learns of a parent's deception, they will have a problem being comforted later by words/actions, wondering if the parent is telling the truth. In addition to the shock or dismay, children may also have to deal with anger. Children as young as 4 and 5 years old will pick up on the tension in the home. Experts say that children who suspect parents are concealing something often imagine the problem is worse than it is because it is "too awful to be talked about." Children may also feel isolated from their parents at a time of tremendous stress.

Honesty helps children establish and maintain a bond of trust. The truth, even when it is painful, is vital. By being truthful, you can feel assured that the child can be guided to accurate, healthy and hopeful interpretations of events, and you can help them learn coping skills.

Who should tell them?

  • The parent is the most logical person to tell the patient and siblings about the diagnosis. Your children trust you. It is OK to cry. Seeing a parent cry gives the children permission to cry, also. If you feel you are unable to tell your children or will be unduly upset, it might be best to have someone else tell them.
  • If you cannot tell your child and their siblings, you may consult our child life specialist to help prepare your child through medical play and education. Regardless of whether you are able or unable to tell the children about the diagnosis, the child life specialist is available to work through their emotions through play. Children learn and express themselves best through play.  Sources of support could be a close relative, your doctor, the counselor or another member of the health care team.

When to tell them?

It is beneficial to talk to your child about the diagnosis as soon as you receive it. Help them understand the treatment plan as soon as you are aware. Tell your child what is wrong using simple terms they can understand.

What to tell them?

  • Give your child enough information to help them deal with their world. Provide enough facts to lessen their fears. Be as hopeful and positive as you can be while still being honest.
  • Reassure them that they will be kept informed of any changes. Tell them how they will be treated and any side effects they will notice. Let them know if changes will occur at home and how they will be affected because of the treatment.
  • Listen to your child and his/her reactions. Answer questions truthfully. It is OK to say, "I don't know." If your child doesn't talk or ask questions, don't push them.
  • Don't be afraid to share your feelings with your child. "I feel sad," "I feel angry," "I feel scared."

What to tell the siblings?

  • Tell your child’s siblings that he/she will be taken care of while they are away with your ill child. Reassure them that their happiness is very important to you.
  • After telling the sibling(s), reassure them that they cannot "catch" cancer or blood disorder from their sibling.
  • Reassure the siblings that once treatment is completed, you will tell them of any changes in their sibling’s health.

Age Differences 

3-5 years

  • The most stressful part of an illness is the separation from the primary caregiver.
  • At this age, children feel they have magical powers and what they wish will come true. They may blame themselves that their sibling is ill, or about having bad thoughts about that them. They need to know that nothing they have done caused their sibling’s illness.
  • Children in this age group do not understand the concept of death.

6-11 years

  • Children in this age group can become overly concerned about their health and the health of their sibling. Be aware, so as not to worry them with details.
  • Tell the children's teacher or school counselor about the child’s condition as soon as possible.
  • Changes in eating, sleeping, school work, and friendships may occur.
  • Children may regress in behavior.

Teens

  • Teenagers have an especially hard time because their own emotional balance may be on a roller coaster. They may be trying to be independent, and now they may need to depend on their parent again.
  • Some will rebel and regress in their behavior.
  • Some may tend to take on too much responsibility and mature too rapidly.
  • Some will just take the experience in stride.

Points to remember for siblings: 

Children are good observers, but poor at interpretation. (Example: Grandpa went to the hospital and died. Brother is going to the hospital, so he will die, too?)

Instead of dwelling on uncertainty, focus on the hopeful facts: "Everything possible is being done. Your sister is young and strong and can get better."

If you never show a child your feelings, chances are, they will not show theirs either. Covering up strong emotions in this instance, may not always be a good idea. A child may become frightened of his/her own feelings instead of accepting them as being OK.

Take your children's feelings seriously. It is common for children to have many different reactions when they are told someone they love has cancer. These can include anger, sadness, guilt, fear, confusion and even frustration. Let them know it is OK for them to have lots of different feelings.

When the news is really hard.

Even when prognosis is really poor, it is still important to speak truthfully. If a child asks if he or she is dying, a parent can answer by saying, “You are not dying right now. If anything changes, you can be sure that we will let you know.” Or you can say, “Many people with this kind of cancer die, but some people get better. The doctors are doing everything possible to help your sibling/you get better." Parents also may want to simply explain the medical treatments they/their sibling are/is receiving and how the treatments may make them better.

Along with honesty and reassurance, parents should watch for signs that their children are not coping well. According to experts, these signals include a prolonged change in mood or personality, decreased appetite, withdrawal from friends and family, acting out at school or physical complaints such as headache or stomachache. Nearly all children will have some of these symptoms for a while. If it continues too long (more than 2 weeks) or interferes with daily functioning, then it's time to be concerned. Parents who are concerned with how their child is coping should talk to the child's pediatrician, or contact the child life specialist, counselor or social worker in our clinic, who specialize in helping children and families cope with illness.