Communicating Cancer to Your Kids

A study just published in the British Medical Journal found that women faced with a diagnosis of breast cancer are having difficulty talking to their children about their disease.

Dr. Jacqueline Barnes of the Royal Free and University College Medical School in London and colleagues said the reason cited most often for this difficulty in communication is fear of what questions the children might ask, particularly about death. In a survey of 32 women with stage I or II breast cancer, the researchers also found that women were concerned about causing too much anxiety and stress for their children, or they thought the children would not understand their illness.

Such assumptions can make a difficult situation dramatically worse for a child. Experts now almost universally agree that communication is essential for children to be able to cope with the illness of a parent. Yet few women receive counseling on how to discuss their illness with their children.

"Parents receiving a diagnosis of cancer need to be offered support and acknowledgement that they are part of a family unit, all the members of which are likely to be profoundly influenced by the illness and its treatment," the authors wrote.

Telling the Truth

When parents fall ill-even if only with a bad cold, the flu or a strained back-caring for young children becomes challenging. A serious illness, however, presents not only the practical dilemma of how to keep the day-to-day logistics going, but a host of psychological challenges as well. What should you tell the children? When do you tell them, and how much?

Those who work closely with children agree that telling them the truth as soon as possible is crucial.

Sometimes parents are fearful of telling the child because they think the child will be overwhelmed. But when there's a delay, or if it's a family secret, the child builds up resentment. So on top of the shock or dismay, you also have anger. The child says, "Why was I left out? Don't you trust me enough with this information? I have a right to know."

If they are not told, children as young as 4 and 5 can pick up on the tension in the household. And children who suspect parents of concealing something often imagine that the problem is even worse than it is because it's "too awful to be talked about." In addition, when a child is left out, he or she will feel isolated from his parents at a time of tremendous stress.

But how to begin? The approach depends partly on the child's age, but should always be couched in terms of "love and hopefulness," say experts.

Even when a parent's prognosis is really poor, it is still possible to speak truthfully. If a child asks a parent if he or she is dying, a parent can answer truthfully that "I'm not dying right now. Many people with this kind of cancer die, but some people get better. I'm doing everything possible to be one of the people who does great!"

Along with telling the truth, parents need to reassure their children that they will continue to be cared for no matter how family routines may change due to the illness. Parents must also let their children know that their illness is not contagious or caused by anything the child did.

Finally, along with honesty and reassurance, parents should watch for signs that their children are not coping well. These can include a prolonged change in mood or personality, decreased appetite, withdrawal, or acting out at school.

Here are some specific suggestions from the American Cancer Society:

1. Talk openly and honestly. As with adults, information demystifies cancer and helps children feel less helpless. Thus, the first and most important step is to give the children accurate information about the illness immediately. Tell them the name of the disease, where it is located, and how it will be treated.

2. Keep children posted. Throughout the illness, tell them what is going on in the present and what is likely to happen in the near future.

3. Pick the right adult to talk. A parent, relative, teacher or school counselor who is close to the children should convey the news, in familiar surroundings.

4. Explain specifics. Talk in detail about the effects of the illness and the side effects of the treatment, such as fatigue, hair loss, weight loss, surgical alterations, and moods so that the children are not left to fantasize why these things are happening.

5. Use simple, age-appropriate language. Base it on what is really happening. Begin by asking what they understand or think about the illness. Using dolls or drawing pictures can help, but don't use fairy tales to help little ones understand, because these can get their imaginations going in unforeseen directions.

6. Make sure everything is in context. Children are familiar with being sick, going to doctors, and taking medicines, but be careful about saying things such as, "It's like when you had a sore throat and had to go to the doctor," because they might conclude that their sore throat caused the parent's illness or that the next time their throat hurts, it means that they also have cancer.

7. Be honest but hopeful. Parents or teachers often avoid useful discussions with their children because they're afraid of such pointed and difficult questions as, "Will you die?" The answers to all questions should be honest but as optimistic as the situation allows. For example: "This is serious illness, but we are getting the best possible treatment and the doctor thinks your mom is responding very well." When optimism seems quite unrealistic, parents and teachers need to acknowledge how difficult it is to live with uncertainty and to emphasize their determination to confront whatever happens together as a family or school. Be sure to let children know when death is near, and if possible, allow a final leave-taking.

8. Make sure children don't feel responsible. It is important to let children know that the adult's illness is not their fault. Children dwell at the center of their small universes and often think that bad things happen because they are naughty.

9. Remember the whole process. Communicating with young people about cancer is not a one-time event. It is a process that will continue over time. Should the illness go into an extended remission or continue as a chronic problem, children will require updates tailored to their own changing understanding and emotional needs as they develop.

SOURCES:

British Medical Journal, August 19/26, 2000; 321:462-463, 479-482
The American Cancer Society (http://www.cancer.org)
The National Cancer Institute (http://www.nci.nih.gov)
CNN Online (http://www.cnn.com)

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