How Do I Tell My Children?

by Sue Friedman

Presenter: Karen Hurley, PhD, Clinical Psychologist, Clinical Genetics Service, Memorial Sloan-Kettering Cancer Center

Dr. Hurley, whose work focuses on high-risk families, spoke of sharing cancer and risk information with children, including the following.

Why should we tell our children about cancer and cancer risk? Although it’s natural for parents to want to protect their children from difficult topics, children are already exposed to the disruption that cancer causes in families: the agonizing decision making, family members undergoing treatment and surgery, or loss of a family member to cancer. Absent an explanation they understand, children form their own beliefs, which may be based on incorrect information and can be difficult to resolve later.

There are two levels to the question, “How do I tell my children?” The first is: What words do I say? When should I tell them? The deeper, emotional layer is: How do I go through with this? How do I share this information when I’m still processing it myself?

Genetic status is a lifelong issue, although the details and focus change during our lifetimes. We do not have be totally resolved about our genetic status, but we should be clear about how we feel before discussing the topic with our children. The goal is to communicate BRCA and hereditary cancer risk to children in a way that leads to their growth and resolution and averts problems later.

The discussion is complicated by our desire to protect our children, our guilt, and our beliefs about order and fairness. Inheritance of a mutation is random, with a 50/50 chance of passing our status to each child. Even acknowledging this, randomness goes against our sense of order and fairness. Guilt is a normal response to uncontrollable events, especially with regard to passing on a gene mutation.

Preparing to discuss difficult topics with children:

1. Have at least one adult who is your support in dealing with your genetic status. Before talking with your child, call that support person for a pep-talk, and for a debriefing after the conversation.
2. Acknowledge your own feelings of sadness, fear, and guilt before talking with your children. These emotions needn’t be totally resolved, but it’s important to identify them. Discuss your feelings with your support team; realize they are your feelings, separate from your child’s, which may be very different.
3. Think about your beliefs as a parent. Some of us feel it’s our responsibility to ensure no harm ever comes to our children. Don’t hold yourself to an impossible standard.
4. Reflect on your family’s style of communication. If your family doesn’t have a history of good, open dialogue, talk about other topics before discussing cancer.
5. Clarify your rationale for having the discussion. Is it to reassure your child about what is going on around her, or because you want her to have genetic testing to alleviate your own guilt? Be clear about your motives to help determine the appropriate content and timing of your discussion.
6. Verify information. Write what you want to tell your child. Double-check the facts with a genetics expert.
7. Consider your children’s autonomy (present and future). They have their own life path to follow. If you test children or pressure them to test, you take their choice away.

We cannot control genetics. The legacy we can control is the life lessons we teach our children. We can use this discussion to teach our children how to tackle challenges: cope with uncertainty, adversity, and uncontrollable events, and handle the agonizing predicament of making decisions when there are no good choices but a choice must be made.

What to Consider Before Talking with Children about Cancer

• What are your child’s emotional maturity and coping skills?
• How do you usually talk with your child about sex, death, religion, or other important issues? Use that template to guide you.
• How does your child ask for help? Does he come to you with problems, does he act out, or does he have stomachaches? Look for evidence that he might need more help coping with the information.
• What transitions may occur due to cancer risk? Prior to big disruptions such as surgery, start a dialogue and prepare for the change. Try to “uncouple” the actual event from the changes in the household.

Communication Tools

1. Use simple, age-appropriate terms.
2. Avoid premature reassurances and validate your child’s concerns. Pushing a child’s fears aside makes the situation appear too big and scary to talk about.
3. Avoid unrealistic promises. Broken promises can diminish trust.
4. Allow your child to tell you how little or how much she wants to know. Some children are more curious, others are more private.
5. Allow your child age-appropriate participation in your process. Give him jobs to help him feel he is contributing.

Dr. Hurley also provided tips from the Parents at Challenging Time (PACT) Program at Massachusetts General, which focuses on parents who are dealing with cancer diagnosis:

• Euphemisms lead to confusion.
• The worst way to hear news is to overhear it.
• Welcome all questions.
• Figure out what the real question is.
• Questions do not require immediate answers.

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