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Cancer in our Family

Helping Children Cope With a Parent's Illness

American Cancer Society

HELPING CHILDREN UNDERSTAND A CANCER DIAGNOSIS

Lives are changed the moment cancer is diagnosed. Regardless of the hopeful picture often presented with a cancer diagnosis, there is tremendous fear, shock, and dread associated with this news. Even today, when so much is known about cancer, people still think of death, suffering, and isolation when hearing the words, "You have cancer."

Along with your own reactions to the news, you must also deal with how cancer will impact your children. Parents never want their children to feel pain or to suffer from insecurity. A cancer diagnosis brings all those worries to the surface, even if the outlook is good.

There are many factors that affect how someone responds to a cancer diagnosis, including how a person has reacted to and dealt with crises in the past; what type of support system is in place; and what the person's beliefs are, in terms of spirituality, values, and culture. Those same factors will affect how your child responds to your cancer diagnosis.

You can benefit from discussing how you feel about having cancer with your spouse or partner, minister, close friends, or a professional counselor. These discussions can help prepare you to talk with your children about the diagnosis. Sharing personal feelings with others can help diminish some of the painful aspects of sharing this news with children and help you feel more in control of the situation.

OPENING THE DOOR TO COMMUNICATION

You may feel alone, as though you are the only one affected by your cancer diagnosis. But your partner, children, and friends are also struggling with the complex emotions related to the diagnosis. Cancer affects the entire family. Each person in your family has to deal with the cancer diagnosis in his or her own way. Some family members may want to take charge of organizing help for you in order to feel more in control. Other family members may want to avoid the situation and pretend it is not happening.

Talk with your family and ask everyone to share his or her feelings so that fears and concerns can be addressed. The different stresses that cancer brings can challenge even the best-functioning families. Yet, cancer can also bring families closer and provide them with a deeper appreciation of each other.

Finding a way to talk with your children about your illness and how it is likely to impact your family is an important part of helping them cope. You can use the activities at the end of this chapter as tools for starting conversations with each other. Talking about the diagnosis can be difficult, even if the family has dealt well with difficult issues in the past. Cancer and its treatment can bring up feelings that may be hard to discuss. Sometimes, people use silence as a way to protect themselves or each other from fear, upsetting thoughts, or feelings. However, withholding or denying these feelings will lead to more problems later on.

Do not keep your cancer diagnosis a secret. It is better to talk with your children about what this diagnosis means for you and your family. Some parents think their children will worry more if they are told the facts about the situation. Yet experience has shown that talking about a parent's cancer diagnosis helps lower a child's anxiety and improves family communication in general. Children also have not had the same life experiences as adults; therefore, their emotional response to a parent's cancer diagnosis may be different from that of adults. Trying to protect children by hiding the diagnosis is not a good strategy. Cancer is an impossible secret to keep, and even younger children will most likely suspect that something is wrong anyway.

Children can often pick up on the anxiety and worry of their parents. Usually, they fear and believe the worst. If they are not given honest explanations, then they will usually draw their own conclusions. Your children may feel rejected if you are being secretive. They may conclude that you do not love them anymore or that they are being punished for being "bad." Also, the effort it takes to keep such a secret may rob you of precious energy.

Keeping a secret can create an increased sense of doom for children. They may think that whatever is happening in the family is too terrible to share. When a cancer diagnosis is kept secret, children can also feel isolated from the family. Parents have a natural desire to protect their children from pain and hardship. In this situation, however, being overly protective of your children can backfire and only make things harder. Instead, you can help your children cope with the challenges of cancer in your family and enable them to develop effective tools for dealing with other stressful situations later in life.

Children tend to model their behavior on that of their parents. How your children react to your cancer diagnosis depends a great deal on how you and other close relatives or friends handle the crisis. This responsibility can be very stressful because you must deal with your own powerful feelings of fear and uncertainty. However, together, you and your children can learn to cope with cancer and its treatments. One survivor said, "I wish I had been more open with my children instead of trying to shield and protect them. I think I could have prevented some of the 'acting out' behaviors that I saw. I think they needed to be more involved to help both themselves and me."

You are the best source of information about your cancer diagnosis. Therefore, your children should get information from you and other informed caregivers. If your children hear about the cancer from someone else — such as a curious neighbor or a classmate who has heard other people talking — it can harm the trust that exists between you and your children. If your children think you are being vague or are trying to hide something from them, they will have difficulty believing you are telling them the truth. You must do everything possible to maintain their trust. Start by learning how to share information truthfully, in a way that allows your children to understand and take part in the family's cancer experience.

Be as honest and sensitive as you can. If you are straightforward, this approach will help children adjust to this difficult situation and may influence the way in which they deal with change in the future. Answer whatever questions your children have as openly and clearly as possible. Allow them to react emotionally to what is happening as you teach them how to cope with the challenges of cancer. This is a time of learning — both for you and your children.

Try not to hide your feelings. If you never show your feelings, chances are your children will not, either. Covering up strong emotions is like sitting on a time bomb. Eventually, it will explode. You can lead by example by admitting your fears: "It is a really scary time right now for me and you, but we know that it won't always feel like this."

If you are honest with your feelings, your children will know that it is okay to share their feelings, too. If you try to hide your feelings, your children can become frightened of their feelings instead of accepting them.

Your first discussion about your cancer diagnosis should not be your last. Communicating with your children about cancer is not a one-time event. It is a process that should continue over time. As treatment progresses, new issues and concerns will arise. Keep your children informed about what is happening throughout the illness. As the cancer evolves into a chronic illness, children will need updates tailored to their own changing emotional and developmental needs.

TALKING WITH YOUR CHILDREN

Timing Is Everything

The first discussion with your children about your cancer diagnosis should come before your treatment begins and at a point when you can discuss it openly and calmly. There is usually a brief window of time between receiving a diagnosis of cancer and beginning treatment. Have the discussion in your home, in a quiet setting, at a time when no one needs to rush off to keep another appointment. Allow plenty of time for children to ask questions and to express their feelings.

Close family members should also be involved in the initial discussion. Naturally, if a friend or relative has a close relationship with the children, it may be important to involve them as well. In a two-parent household, it is advisable for parents to talk to their children together. It will help if you explain what is happening. This reassures the children that you are able to talk about it and that they have permission to talk about the diagnosis in the future. If you are a single parent, consider asking a relative or friend to be with you if you are feeling nervous about the conversation.

Ideally, you should choose a time when you are feeling fairly calm to talk with your children. If you are distraught or feeling uncertain about what to say, it is better to wait until your emotions are under control. However, you do not need to pretend that there is no need to be concerned, nor should you worry that you're causing harm if your children see you crying. You can say that this news is upsetting because cancer is a scary disease and it is normal to have strong feelings about it. Your family will still be able to find ways to cope.

What you tell your children will depend on your own understanding of your particular cancer and its prognosis. Even with an uncertain future, you still need to focus on what you have to do to live with your illness; children will need to have that same goal. Regardless of the words you use, it is important to communicate your willingness to tell the truth. This does not mean that you should tell your child everything you know, as soon as you know it. It means that you should give your children truthful information, when they need to have it, to help them cope with what is happening to your family.

The goal is to give children a balanced point of view. They should realize that cancer is a serious — but not a hopeless — illness. Here is an example: "I don't want you to worry about the future right now because we don't know what will happen in the future. Let's think about what is happening right now. If that should change, I promise I will tell you. I want you to ask me any questions you have, and I will do my best to answer them."

Consider Your Child's Developmental Stage

A child's age is an important factor in deciding what and how much you should tell the child about a cancer diagnosis. For example, an adolescent daughter of a woman with breast cancer will have different concerns than a six-year-old girl who needs a parent for basic caregiving. The guiding principle should be to tell the truth in such a way that your child is able to understand and prepare for the changes that will happen in family life. You may want to ask a social worker, school counselor, or other parents in your position how they have explained cancer to children who are the same ages as your children.

When talking to children, use simple, age-appropriate language based on your situation. All children need the following basic information: (1) the name of the cancer, such as breast cancer or lymphoma; (2) the part of the body where the cancer is located; (3) how the cancer will be treated; and (4) how their own lives will be affected.

Although your child may not respond right away, you should be prepared to answer whatever questions may come and allow the child to show his or her emotions. Your child may react more to how you behave than to what you say. There is nothing wrong with telling your child that you do not have all the answers.

Talking with Newborns, Infants, and Toddlers

Infants and babies up to age two are too young to understand an illness such as cancer. They cannot see it or touch it and are more concerned with what is happening to them. Children more than a year old are concerned with how things feel and how to control things around them. You can describe the illness to toddlers in the simplest possible terms: "Mommy has a boo-boo. Mommy's medicine makes her hair go away, but Mommy will be okay."

Talking with Preschoolers

Preschoolers are better able than younger children to understand illness; however, they will not need a great deal of detailed information. Begin by asking what they understand or think about the illness. Using simple explanations with dolls or pictures can help. For example, a father could draw a picture of himself with a circle in his stomach where the cancer is located. Preschoolers tend to focus on the visible symptoms of illness rather than the abstract concept of cancer. Demonstrating on a doll or stuffed animal may make this concept more concrete for them. Younger preschoolers often do not ask questions because they do not know what to ask. Therefore, simple explanations are recommended.

In addition to the illness itself, there are other worries children have about cancer. The most common of these worries is that something they did (or did not do) may have caused their parent's illness. While we know this isn't true, most children worry about this at some point during the experience. Preschoolers engage in "magical thinking," which means they think the world revolves around them and that they can make all kinds of things happen. Therefore, your children need to understand that they did not cause the cancer to happen. Be sure to reassure them about this often.

Because young children are afraid of separation, strangers, and being alone, they need reassurance that they will not be abandoned. Let them know that someone will always be there to take care of them. Assure them that you are doing everything possible to get better. Explain that there may be times when your mind is on other things, but that does not mean you have forgotten about them. Children also tend to get upset if they see prolonged expressions of sadness by their parents. Therefore, even though some sadness should be expressed by the parent, it should be kept to a minimum or shared more openly with other adults.

Talking with School-Age Children

Older children (e.g., ages six to twelve) may be able to understand a more complex explanation of the cancer diagnosis. At this point, children may have been taught about cells of the body. They may be interested in seeing pictures of cancer cells or learning more about cancer from their parents.

Cancer cells can be described as cells that grow in the body, but do not belong there. Often, these cells grow together to form a lump, which is called a tumor. Treatment involves taking medicine to kill these cells or having a surgeon remove them. School-age children may particularly benefit from books with stories and descriptions of cancer-related experiences.

School-age children may also believe that bad things have happened because they have been angry with their parents or because they misbehaved. When a parent gets sick, children often feel guilty and think they are to blame for the illness. Children will not usually express these feelings of guilt, so it is important for you to reassure them that your illness is not their fault; no one can cause someone else to get cancer. Do not wait to see if your children bring this up with you. They may not express these feelings verbally for a long time and, in the meantime, they may feel guilty for no reason.

Give your children a plan for their continuing care. They need to know whether their routines will stay the same — and, if not, what will change. Consistency is key in their care. It is especially important for children to see that their parents are still in charge, that their lives will continue as before. They also need reassurance that the well parent is not likely to get cancer.

Older school-age children need to know the name of your illness, how it may progress, and its symptoms, treatments, and potential causes. They need to know the relationship between the illness and your behavior and appearance. If you are expected to have symptoms related to the cancer or its treatment, try to prepare your children for what they may see. For example, you might say, "The doctors have told me this treatment will make me very tired." The focus of discussions should be on the cancer being no one's fault and how your family will deal with the changes in daily life that will happen as a result of treatment.

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Excerpted from Cancer in our Family by Sue P. Heiney, Joan F. Hermann, Jennifer L. Sharpe, Joey Ivansco. Copyright © 2013 American Cancer Society. Excerpted by permission of American Cancer Society.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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