The decision of how and when to tell a child with cancer about her diagnosis is individual for each family’s situation. There isn’t really a set “formula” for how to have that discussion because so many different factors go into determining when and how to have it.
At Children’s, various team members can be of assistance as a family begins to plan how they will talk about diagnosis with their child. Here are a few of the different ways we help with this conversation.
Helping Parents Cope With Information
As a child life specialist, I might say to parents, “You know your child—tell me what you think is best as we approach this conversation.” It’s about finding out what the family wants to do, and then helping find the words and resources to do it.
That might mean listening and also helping parents cope with all of the information that they’ve received so far. In some cases, parents might ask someone from the team for help in planning this conversation and even leading it, if needed.
In other cases, parents might say they want to be the ones to tell their child because they want to incorporate their faith, their words, and their descriptions into the discussion.
No matter what parents choose, we always want them to know that the whole medical team can help. We all have different strengths. But parents know their child best, so we want them to tell us what they need from us—even if it’s just a matter of “coaching” them or providing them with resources for that talk when the time is right.
Finding The Right Words
Another way child life specialists can help is by giving parents the words they need to explain cancer to their child. I’ve met with parents and said, “For your child’s age and developmental level, this is what I’d say.” We can also use art and play with dolls and real medical supplies to assist in explaining diagnosis, a procedure, or a surgery.
Oftentimes, kids have heard these medical words because doctors or nurses have used them in their room—but the child might never been told directly. Kids usually know more than we think they know.
Sometimes, it’s a relief for parents when someone else has that conversation for them. Because it’s such an emotional discussion, parents might need a little bit of help with it. And the discussion can happen with a nurse, a child life specialist, or any other person that the family feels they need in that moment.
Using Medical Play To Talk About Cancer With Kids
If I’m the one having the conversation, I bring toys or an activity into the room to build rapport and encourage comfort. I’ll use play and conversation to build trust with the child.
So, we’ll play for a bit, and then I begin to assess the child’s knowledge by asking questions such as, “Do you know why you’ve been in the hospital?” or, “What have the doctors said about why you are sick?” These sorts of questions encourage him to tell me what he thinks is going on.
And maybe the child already knows a little bit about what’s happening—or maybe he has no idea. Either way, that’s my cue to say, “Would you like to learn more today?”
If a child has had a test or procedure done, we might act that out on a doll. Then, I’ll say, “Have you been sick, too?” Play gives the child a way to explore and allows adults to use the words to explain what’s been happening.
For instance, “A tumor grew in your leg bone, and this is something that does not belong. Our doctors will work hard to give the best medicine to help that get smaller and go away with medicine called chemotherapy. Chemotherapy is a big name for very strong medicine that helps a tumor and cancer go away.”
Allowing The Conversation To Take Place
There are some families who want to protect their child by not saying anything to her about what’s happening. That silence can go on for days, but we generally recommend that she be told at some point.
There comes a time when the medical team has to help parents get to a place where they can allow the conversation to happen, so everything isn’t a secret.
We can only imagine how hard that must be. But we are here to help families gain comfort and understand that giving their child knowledge is part of helping her cope, too. For example, if she doesn’t understand what’s happening, she might think her illness is a “punishment” for doing something wrong. You can reassure her that it isn’t.
There are many benefits to being told honest, simple, and truthful information—and we can help you get that information to your child. Don’t hesitate to reach out to a child life specialist, physician, or counselor when you’d like some help to find the right words.
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