Children and adolescents require an approach based on their age and coping skills. However, talking with them about cancer is essential. In doing so, children learn that their families are there for support and they can count on their families to be honest with them. Children should be encouraged to talk about their feelings. Some parents who tried to "spare" their children from knowing the truth later regretted not discussing things more openly during the course of the illness.

Judith, caregiver: "I wish I would have 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."

When families choose to hide information about a cancer diagnosis, children may pick up on tension and stress. As a result, they may suspect something is being hidden from them. Children may listen in on adult conversations to get information. They may not understand what they hear, and they could hear things that were not intended for them to hear.

Wendy experienced cancer in the family as a child: "My dad did not want to tell my older sister or me that he had cancer. Even though I didn't know he had cancer, I definitely noticed the changes in our house. I remember he had blue and purple marks on his neck and chest (for radiation treatments) and a catheter in his chest. His skin was pale, his hair gradually fell out, and his usual round belly disappeared. My mom and I made several trips to our local pharmacy and it seemed like he was always taking medicine."

As part of normal child development, children are egocentric, meaning they view the world only as it relates to them. It is not uncommon for children to think something they said or did caused the cancer. This concern must be addressed as quickly as possible after a child learns about cancer.

In some families it may be necessary for the children to help more with chores, and they often receive less attention because of cancer treatments or doctor's appointments. If they don't understand why this is happening, they might feel as if they are being punished.

Cancer is often an unfamiliar concept to children. They tend to understand concrete information and make broad generalizations. Children may not realize there are many types of cancer and that each person's cancer is different. They absorb information and ideas from other children and what they see in everyday life, including what they see on television. Without the correct information, children may fill the gaps with their imagination. Sometimes what they imagine is far worse than reality.

Parents often struggle with what to tell their children when they are diagnosed with cancer. How much they need to know and can handle depends on the children's age and level of maturity. Tell them a small amount of information at a time in words that are easy for children their age to understand. Then give them time to grasp the information and an opportunity to ask questions. Ask them if they have heard any words that they don't understand or find scary. Help them to express their feelings and reassure them of your love. It is easiest for children to show their feelings using activities such as puppets or painting. Older children might prefer writing poetry or drawing.

Peter, caregiver for his wife: "Telling your children is the hardest part. It is essential that you think through what you're going to say as the words and emotions will have a significant impact on how the children will react. The calmer you are, the less frightened they will be. My wife and I told our kids (our son was 15 and our daughter was 11) at the end of a Christmas ski vacation. By that time, we had made arrangements to obtain a second opinion at a top cancer center, had revised necessary legal papers, and had talked with our closest friends. We calmly told the kids, in easy to understand words, what the first doctors had told us and that in a few days we were going to Texas for more tests. As calm as we were, the revelation of cancer was a huge shock to our kids and was met with fear and tears. It is essential that kids are reassured that their parents are going to do everything possible in the way of treatment, that they are still deeply loved and always will be, and if necessary, assured none of this is their fault."

Families can explain their situation to children in just a few sentences. "My doctor told me I am sick with cancer. The doctor is going to do what he/she can to make me better. I'll have to go to the doctor a lot to get a special kind of medicine so I might not be able to spend as much time with you. Sometimes the medicine might make me feel bad so I might not feel like playing much. I want you to know how much I still love you."

If the person with cancer does not feel comfortable telling a child about their cancer, a close relative or friend may be able to explain things to the child. This often depends on the relationship of the person with cancer to the child (for example aunt, grandparent, or parent).

There are many reasons children might have difficulty coping with cancer in a parent or another family member. The person with cancer might be getting treatment at a hospital far away from home, or they may be recovering at home and appear uncomfortable or look different. Children may also be asked to do extra chores or be on their best behavior if people other than their parents are helping to care for them. They may question or even resent a lack of attention. Younger children may focus on death. Older children who are becoming more independent must confront not just separation, but the possibility of permanent separation or death.

While it is important to try and maintain a "normal" routine and lifestyle for children, they also need to be included as part of a family that is fighting cancer. Children may ask to see where treatment will be given and may ask questions about any changes they notice in the person.

Peter, caregiver for his wife: "My wife and I tried to help our kids by trying to maintain as normal a routine as possible. When you have new information or when they ask, discuss the illness in age-appropriate language that they can understand. Frequently reassure them of your love and that they will always be loved and cared for. Involve them in appropriate activities, like selecting a wig! Perhaps most important, enroll the kids in a local support group for kids whose parents also have cancer. The sharing of experiences with the help of professionals worked wonders in helping them cope."

Many children will try to behave like adults so life will be easier for their parents. A support group for children gives them a safe place to air their frustrations. Hospital social workers, nurses, psychologists, clergy members, and school counselors are good resources to ask about support groups in your area.

For additional information about how to talk with children about cancer and a list of suggested reading materials for parents and their children, contact your American Cancer Society. Information for families who have children with cancer is also available by calling 1-800-ACS- 2345.

Revised Date: 3/19/01