Talking to your child about their cancer

Some parents think that they can protect their child by not telling them about the cancer. But children usually know that something is wrong. Experts agree that even children as young as 3 or 4 years old should be told the truth according to their level of understanding.

It’s natural to want to protect children from something scary by not talking about cancer. But children can tell from the way everyone is behaving that something is wrong. It’s best to talk about what’s going on in ways that children will understand. There are many good reasons to be honest.

• Being honest helps your child to trust you and the healthcare team. Children feel more scared when they don’t know what’s happening to them or why it’s happening.
• Being honest gives children the correct information about cancer and cancer treatment. If you don’t tell the truth, they use their imaginations to try to understand what’s going on. Some children will worry that things are worse than they are.
• If you tell children why they are having treatments (like taking medicine, having lumbar punctures) they may be more willing to cooperate even when treatments are uncomfortable.
• Knowing about their illness and treatment can help children feel more in control at a time when they feel out of control. When they know what’s going to happen, they can find ways to cope with treatment.
• If you pretend everything is fine, your child might think they shouldn’t talk about their own worries. They might not tell you how they feel or what they need.

You’re not alone if you have no idea how to start a conversation about cancer. Talk to your child’s healthcare team about ways to discuss this with your child. Often the healthcare team is involved when you talk about the diagnosis for the first time with your child. Most commonly, your child’s doctor will tell your child about the diagnosis with you there. Your child’s healthcare team is always there to support you and your child.

Whether you’re about to have your first talk with your child or are talking again about some topics, these tips can help.

Choose a time to talk when you’re feeling calm. It’s hard to talk if you are overwhelmed by your own feelings. Practising the key things you want to say in this conversation can help. But don’t put too much pressure on yourself to have the perfect conversation. There will be other times to talk.

Have someone else with you. If you are part of a 2-parent family, try to find a time when both parents can be there to support your child and each other. If you are a single parent, think about asking someone else who is close to your child to be there with you. That way, your child will know that there are other adults who will support them.

Have many short talks. A single conversation with your child about cancer will not be enough. Having many short talks will encourage children to talk and ask questions and will give them the message that they can talk to you any time about cancer.

Use simple, direct words. Keep language simple and sentences short. You know your child and what words they will understand. Try to use or explain the words that your child will hear the healthcare team use. For example, chemotherapy may be explained as “special drugs to get rid of the cancer.” A tumour may be described as “a lump inside your body.” It’s confusing to children if they hear different words from different people. Even using simple words, you may have to explain things many times, especially with younger children.

This means not using euphemisms, which are words or phrases people use because they find the real words harsh or scary. These words can be confusing to the child who has cancer and their brothers and sisters as well. For example, if you avoid using the word “cancer” and only talk about your child being “sick,” siblings can get the wrong message. The next time a sibling is sick with a cold, they can worry they will have to go to the hospital and have chemotherapy. It is better to use the more precise word, explain it and disconnect it from common words that are part of everyday life.

Think about how your child might understand your words. Children often understand words literally. Try to explain what words or phrases mean or choose different words to explain new ideas. People often describe general anesthesia as being “put to sleep” but those words might remind children of a pet that was “put to sleep” and worry that they are going to die. Try not to use the words “bad” or “good” to talk about cancer. Sometimes people may describe cancer cells as “bad cells.” Using the term “bad cells” can make the child think that there is something bad in them. Children might also think they got cancer because they were bad or did something wrong. Use terms such as “cells that are sick.” Use the word “cancer” openly when talking about the disease to show that it is OK to say the word and to avoid confusion and misunderstandings about other diseases.

Encourage your child to ask any questions whenever they want. Allow and encourage children to ask anything, even about topics that are very hard to talk about (such as death and dying). Children of all ages have worries about cancer. Some children may ask you questions right away. Some children need more time to think about what you have told them. Don’t worry if you don’t have answers. Reassure your child that questions are OK and you can look for answers together. It can also be very helpful to ask your child why they have that question right now.

Go slowly and give small amounts of information at a time. Focus on what they need to know now and what they need to know to feel secure. Having many short talks can prevent the child from becoming overwhelmed with too much information. If you are still waiting for test results, talk about what you know so far. “The doctors are doing tests to find out exactly what’s wrong so they can make a plan to help you get better. When we find out, we will tell you.” Go slowly and give small amounts of information at a time.

Follow your child’s lead. Most children find it hard to take in a lot of information all at once. They need time to think about what you tell them before they can understand new information. Allow time for the child to adjust to what they are being told. Tell them there will be lots of chances to talk and ask questions. If they turn away or change the topic, they might need a break. You can talk again another day. Often children will move on to things that are familiar to them, such as playing, when they have heard enough. It does not mean that the child does not care or understand what they have been told. It means that they are giving themselves a “time out” from the information and time to absorb and adjust to the news they have just been given. Playing is a familiar activity that provides a sense of security and gives the child time to adjust.

Talk about feelings. It’s normal for children to feel worried, scared, angry or even happy, but it’s hard for them to express feelings. Talk about feelings. Share your feelings in words. “I’m really sad and upset that you’re sick and have to stay in the hospital.” Help your child to name feelings. “You look really angry.” Ask open-ended questions. “How do you feel about having an operation?” Show your child that you are willing to listen and talk honestly. Sharing your own feelings helps the child to learn how to express their feelings and talk about their own feelings and fears. It also helps them to realize that they aren’t alone in what they are feeling. Help your child to express their feelings.

Listen to your child. Ask open-ended questions such as “What do you understand about cancer?” to find out what they understand. Talk about any information that is not correct. Ask what else your child wants to know about the cancer or treatment.

Reassure your child. Tell them the doctors have a plan to help them get better. Tell them that you will be there to look after them. But don’t make promises you can’t keep or say things that aren’t true. Describe tests and procedures simply and accurately: “Yes, the chemo will make you feel sick for a while, but the doctors think it will get rid of your cancer.” “The needle will feel like a sharp poke, but it will be very quick, and I will be there with you.”

Be ready for questions. Be aware that your child may ask the same questions over and over again. Be patient. This may be a test to see if the same answers are given, or it may be that your child is processing small bits of information at a time and needs to ask more questions in order to understand everything. Find out as much as possible about upcoming appointments, tests, procedures and treatments and explain these to your child. Children fear the unknown. For many questions, these starting points will help:

• Did I cause the cancer? No. Nothing that you or anyone else said, did, touched or ate caused the cancer. Doctors don’t know what caused it, but they do know how to try to get rid of it.
• Did I catch cancer from someone? No. You don’t “catch” cancer from someone else. It’s not contagious and it’s different from a cold. This also means that you can’t give it to anyone else.
• Will I die? We hope that the medicine will get rid of the cancer and that doesn’t happen. Everyone dies sometime – we don’t know when it will happen but we hope it is when we are very old.
• Will it hurt? Sometimes you will have to have needle pokes that may pinch or sting. Some medicines may upset your stomach, and some days you might not feel well. But doctors and other people on your team will help you.
• Who will look after me? I will be with you at the hospital as much as I can. If there are times when I can’t be there, who would you like to be with you?

Not all children are willing or able to talk about cancer. Very young children and children with special needs might struggle to understand new information. Some kids may just not want to talk about it. Try these creative ways to talk about cancer:

• Ask your healthcare team if they can recommend picture books, videos or comics to explain treatment to young children. Sometimes seeing it in pictures or hearing it explained differently can help a child understand. Encourage older children and teens to read about cancer for themselves.
• Buy a toy medical kit and a baby doll or stuffed animal. Children will often act out what they have experienced. This is a great way to see how your child is feeling and what your child understands about treatment. Playing in this safe way, at home with people they love and trust, can be helpful. A toy medical kit can be a way to explain a procedure and have your child practise on a toy before having the procedure.
• Make up stories or games to explain cancer and cancer treatment. You could make up stories about treating the cancer cells using dolls, toys or Lego. Children who play video games can pretend they are zapping cancer cells.
• Use art and music. Ask your child to draw what they think cancer is and how treatments work. Their drawings can tell you a lot about what they understand. Listen to music to help explain treatment. A loud sound like a drum could be the chemo killing the cancer cells. Talk about how falling asleep before an operation is like the feeling they have when they listen to a lullaby.
• Keep a journal or make a scrapbook. This can help older children and teenagers express their feelings and take part in their treatment.