Parents have to navigate many sensitive and sometimes challenging topics of conversation with their children over the years. There’s no doubt that every parent is stumped at times.
Serious illness, like cancer—and all the emotions that come with it—can leave even the most skilled parents searching for words. Many moms, dads and family members wonder things like “How much should I tell my child?,” “How do I answer her questions?” or “What can I say to reassure him?”
No doubt you already have many of the skills you need to talk with your child about their disease, treatment and feelings. For some more guidance, the social workers and Child Life specialists at Seattle Children’s are wonderful resources. Fred Wilkinson, LICSW, and Katy Tenhulzen, certified Child Life specialist, talk with many of the children receiving treatment through Seattle Cancer Care Alliance and with their families. They offer these suggestions.
Parents can best support their children by letting them know what’s happening in their body and what to expect from treatment, says Tenhulzen. Our desire to protect our children from potentially frightening news sometimes makes this challenging.
“Some parents are tempted not to use the ‘cancer’ word with their kids because they’re afraid it will scare them,” she explains.
But chances are that if a child doesn’t hear the word “cancer” from parents, he or she will hear it from someone else during conversations about treatment. This can be even more unsettling. Tenhulzen gives an example: If a mom told her son only that he has leukemia and later he hears his doctor use the word “cancer,” he may think “I have leukemia and cancer, too?”
Also let your child know about possible side effects of treatment. For instance, tell the child that chemotherapy may cause their hair to fall out—and that their hair will come back. Otherwise these effects can be traumatic and frightening. Explain procedures before they are given, too. This type of preparation helps prevent the child from worrying about unexpected procedures, and it helps the child trust medical staff and you.
Whenever you can, explain the illness and treatment to your child in a direct way. You can help make it less of a mystery.
Match the Message to Your Child’s Age
Kids of different ages have different levels of curiosity about what’s happening and different abilities to understand the information we give them. An age-appropriate explanation for a four-year-old child might be something like this, says Wilkinson: “You have a type of cancer called leukemia. It makes your blood sick. The doctors and nurses are going to give you different medicines to help make your blood better.”
Children ages six to eight grasp the concept of a cause-and-effect relationship, so they may wonder if they did something to cause their disease, says Wilkinson. For instance, they may wonder, “If I had eaten all my vegetables, like dad said, maybe I wouldn’t have gotten cancer.” For kids at this age, it can be especially important to explain they did nothing to cause their illness.
Older children, such as 12-year-olds, can understand more detail about their health and treatment. They may have concerns that younger kids wouldn’t have, such as concerns about body image, if their treatment causes hair loss or weight gain, or questions about whether they might die from their disease. They will be more able to put their thoughts and fears into words.
“Parents are the experts on their kids,” says Wilkinson. They generally know how much their children can understand and how involved the children can be and want to be in conversations about their health, he explains.
Take cues from your kids, adds Tenhulzen, including nonverbal cues, like turning away to play or bringing up another subject when you talk about their cancer. This doesn’t necessarily mean they aren’t coping well, she says.
“The kids are going to let you know how much they are ready to hear,” she explains.
Listen, Too—It’s as Important as Talking
Make a point of letting kids know that it’s okay to ask questions. You can do this explicitly by telling them it is okay and by asking what questions they have.
This kind of prompting can be important for children. “They can sense that their parents are worried,” says Tenhulzen, so some kids keep their own worries to themselves.
Your openness also comes through in your behavior. When possible, answer your child’s questions honestly when they are asked. We encourage families to answer questions at the time, again following the child’s cues. Kids might stop asking or withdraw if they feel their parents are dismissing their questions. If you aren’t sure how to respond to a question, it’s all right to say, “That’s a good question. I don’t know, so we’ll ask the doctor.” Then follow up. It’s okay to admit you don’t have all the answers.
Besides conversation, play can be a good method for finding out how your child is doing. “Play is the way kids communicate how they feel,” explains Tenhulzen. Spending time in play with your child may give you insights into the thoughts, feelings and questions that he or she may not be able to express in conversation.
Remember That Emotions Are Okay
Both parents and kids can have so many feelings about the child’s cancer, from deeply sad one day, to frustrated the next, to doing fine the next. Parents don’t need to hide these emotions, says Wilkinson. Kids tend to sense the feelings anyway. Then they may fantasize about the feelings and make up their own (often incorrect) explanations for them or feel upset when they aren’t discussed.
By showing and discussing their emotions, parents can help relieve this layer of stress and teach their kids by example how to express what they are feeling. For instance, a parent can say, “I feel …” to the child. Also, a parent can validate and give words to a child’s feelings, such as “I know you’re angry ….”
These conversations can help with behavior, too. For example, if a child is hitting because he’s angry, a parent can say, “I know you’re angry, but it is not okay to hit.” Then direct the child to a more appropriate way to express the anger. Many parents struggle with maintaining consistent limits on behavior when their child is ill and their family’s routine is disrupted. So if this challenges you, you are not alone. Maintaining consistency is important, and talking about feelings is one way to help.
Consider How Kids Might Interpret Your Words
Children sometimes take terms and expressions literally, or misinterpret them. For instance, sometimes receiving anesthesia is explained to kids as “being put to sleep” during their surgery. Kids have often heard this phrase in relation to a pet being euthanized. So kids may fear this means they won’t come back or wake up after their surgery or that they might die from “being put to sleep,” says Tenhulzen. You can help prevent confusion by imagining how terms might sound to the child and then taking a minute to explain what the words really mean. Also, you can help keep your child’s stress lower by avoiding overly graphic descriptions of invasive procedures, especially with younger kids.
Limit Your Promises to Things That Are in Your Control
It can be tempting to reassure a frightened or uncertain child with absolutes: “The shot won’t hurt,” “This is the last time you have to have this procedure” or “I promise everything will be okay.” A more effective way to help a child is to provide a dose of realism supplemented by a generous measure of support, explains Wilkinson. For instance, instead of “The shot won’t hurt,” try something like, “I don’t know if it will hurt. Some kids say it feels like a little pinch. Some kids can hardly feel it. But I’ll be here to hold your hand the whole time, and you can let me know how it felt for you.” Rather than, “I promise everything will be okay,” try something like, “We are all going to do everything we can help you get well, and we’ll be right here with you, going through it together.”
Ask Us for Help
Our social workers and Child Life specialists at Seattle Children’s want to support you and your child through the experience of having cancer and undergoing treatment. Please let us know if you would like some more ideas about how to talk with your child about what’s happening. We are here to help.