Why children can benefit from being told about cancer treatment

Children sense problems and imagine the worst.

Children will often imagine the worst if they're not told what's going on. They see a tired parent who may be less patient with them and who feels sick a lot, and may think that the parent doesn't love them or that they've caused the parent's illness. Even very young children can sense when something is wrong. Children are very aware of the parents' and caregivers' feelings. And once children have come up with their own explanation about why something is happening, it can be very hard to change their minds.

Children are likely to find out anyway.

You probably know that children often hear adults talking about subjects not meant for them—even when the child is busy and doesn't seem to be listening. If they think something is being kept from them, some kids will even look for ways to listen without being noticed. When children overhear these conversations, it confirms that adults are keeping things from them. Children also pay a lot of attention to non-verbal clues such as facial expression and tone of voice, sometimes more than they do the words that are said. So even if they don't hear a discussion about it, they may sense something is wrong.

Side effects will be obvious once the treatment begins.

When cancer treatment starts, the child will see side effects like tiredness, weight changes, hair loss or vomiting, and believe any number of things. They see that the person is sick and might think that he or she is going to die. They might think that others in the family will get sick, too. Not knowing what's going on or how to cope with it can be terrifying to a child.

It takes energy to keep secrets.

Finally, the effort it takes to keep such secrets may rob the parent of precious energy. This energy can be put to better use by making children feel safe and prepared for the changes that will happen in the family.

If the adults don't bring it up, the children may assume that they're not allowed to talk about it, and come up with their own reasons no one has told them. To avoid this, children need to be told ahead of time about the kinds of side effects that are likely during cancer treatment.

How to tell children about cancer treatment

While telling children about a parent's or loved one's cancer is important, a child's age should be considered when deciding what and how much you tell a child about a diagnosis.

• The guiding principle is to tell the truth in a way that children are able to understand and prepare themselves for the changes that will happen in the family; it's best to never lie about the changes.
• Kids thrive on routine—it helps them feel safe—so try to keep a regular routine for the children. When life becomes unpredictable, they will need help adjusting to the changes.

Young children (up to 8 years old) will likely not need a lot of detailed information, while older children (8 to 12 years) and teens will need to know more. Teens, who often are testing their independence and limits, will have very different concerns from a 5-year-old, who needs parents for basic caregiving.

Regardless, all children may benefit from knowing the following information:

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

First, set up a quiet time when you won't be disturbed. You may wish to talk to each child alone so that information can be tailored to each child's age and understanding. This can also help the parent pay closer attention to how each child responds. The child may also be more willing to ask questions when away from the other children and possible distractions. Be sure you have time to answer questions and a plan to manage interruptions before you start. If you stop to answer the phone, turn off the stove or let the dog out when your child is opening up to you, the child may find it more painful to try again.

It helps to plan how you will talk with each child. Think about what you want to say and how to answer questions on a level each child can understand, but in a serious and thoughtful way. You are trying to lay the groundwork for an open line of communication with the child—a way for the child to come to you with their concerns, needs, and fears. If you can start this and keep it going by regularly checking in with each child during and after the cancer treatment, it can be a great comfort to them.

Young children (up to age 8) can be told that the body is made up of lots of different parts. When someone has cancer, it means that something has gone wrong with one of these parts and it has stopped doing what it's supposed to do. Over time, a tumor or lump has developed, or a bunch of bad cells started to grow (in the case of leukemia and lymphomas). The tumor (or the bad cells) should not be there.

Cancer can spread and grow into other parts of a person's body, so the person needs treatment to either take out the tumor or stop the bad cells from spreading to other places. Some kids may not have any questions at first, but invite them to ask you later if they think of any. Older children (in general, ages 8 and up) may be able to understand a more complex discussion. They may want to see pictures of cancer cells or read about cancer treatment. Again, encourage them to ask questions that they may think of later.

Besides the illness itself, children have other worries about the cancer. The most common of these is that something they did or didn't do might have caused the parent's illness. We know this isn't true, but most children believe this at some point during the cancer experience. Children can also believe that bad things happen because they have been angry with their mom or dad. So when a parent gets sick, children often feel guilty and think they are to blame for the cancer. Kids usually won't tell you this, so it's a good idea to reassure them about it. Parents can say something like, “The doctors have told us that no one can cause someone else to get cancer—it's nothing that any of us made happen.” It's better not to wait to see if children bring this up because they could be feeling guilty without saying so.

Children may also worry that cancer is contagious and they can catch it, or that everyone dies from it or that the other parent will get it, too. It's a good idea to correct these ideas before the child has a chance to worry. Kids can become confused about how people get sick. A common worry is that cancer can be passed from one person to another, like a cold. Parents can explain that cancer is a different kind of illness and the child doesn't have to worry that someone passed it on to mom or dad or that they will get it.

Parents also can say that it would be very unusual for the other parent to get sick. They may want to tell their children something like this: “The doctors have been working very hard and know much more about cancer than they used to. They also know much more about how to get rid of cancer. All of their hard work means more people are living with cancer today than dying from it.”

So along with the basics about the parent's cancer as noted above, consider stressing these facts:

• No one caused the parent to get cancer. (It's not the child's fault.)
• You can't catch cancer like a cold or the flu—it's OK to hug or kiss the person with cancer.
• The family will work together to cope with cancer and its treatment.
• Even though the sick parent may not have as much time with them, the children are loved and will be taken care of while the parent is sick.
• It's OK for everyone in the family to show emotions, and it's OK to talk about what you're feeling.

You may need to make these points more than once. More importantly, the parent and other adults in the child's life can serve as examples and remind the child of these things. Children pick up on small cues in how you and others act around them, so if they notice adults don't hug the sick parent like they used to, a child may worry. Or if adults are in a hurry and don't speak as kindly to the children as they once did, the children may think the adults are mad at them or blame them in some way for their parent's illness.

To better help your child understand your cancer diagnosis and treatment, you may find it helpful to have him or her work with an expert, such as a child life specialist at Gundersen. A child life specialist is trained to provide information in ways your child can understand and is skilled in working with children and teens of all abilities. For more information about Child Life Services, click here.

You can also share the video tour of Gundersen's Center for Cancer and Blood Disorders to help reduce some of the unknowns that could affect your child.

*Article adapted from the American Cancer Society.