4 tips for having difficult conversations with kids who have life-threatening conditions

Difficult conversations about potentially scary and anxiety-provoking subjects can be uncomfortable. Nobody wants to be the bearer of bad news—especially to a child. As parents, we want to shield our children from danger, hurt, anxiety, worry and fear.

And yet, research has shown that a failure to talk about such important issues can have a negative impact on a child’s health and psychological functioning. We need to prepare our children for what to expect, and to involve them in their own health care. Having a difficult talk can be part of that task. Below are four tips that can help you keep the lines of communication open.

1. Create a safe haven.

To be effective, communication must be open. Strive to make your home a safe place, where family members feel free to ask and share, and where no topic is off limits. And watch your body language. Even though our words may say, “Yes, of course you can ask me,” our non-verbal cues might send an opposing message.

As you dive into a difficult conversation with your child, stay calm. Can you express strong emotions in a controlled way? If not, you may need to work through those emotions before you have the conversation. It’s not wrong to show extreme emotion, but consider what kind of message it sends to your child. The conversation could potentially be more anxiety provoking for the child if your emotions are out of control.

2. Speak the truth.

If your child asks you a question, you must be honest.

By speaking the truth, you’ll build trust, which is essential in parent-child relationships. If your child catches you in a little lie, it could potentially make the child nervous or distrusting in the future.

Keep it simple and direct. Clear language—avoiding jargon—is preferable. You don’t necessarily have to share every single detail, but you should communicate the basic facts using developmentally appropriate language. You can judge your child and the situation to decide how much information is appropriate. Often, difficult conversations happen over time as children age and mature, as they’re able to understand more, and as language develops and they can express themselves more clearly.

Encourage questions. In any conversation you have with children, it is OK to say, “I don’t know.” It is OK to say, “Nobody knows.” As parents, we’re supposed to have the answers, but we don’t a lot of times, maybe more often than not. And saying, “I don’t know” or “nobody knows” is better than a made-up answer.

If a question pops up that makes you nervous, give yourself a minute. Take a deep breath. And then speak the truth.

3. Individualize the conversation.

All children, families and situations are different. You must keep your child’s needs, age and temperament in mind.

For instance, if 6-year-old Johnny comes home from school and says, “Mom, where do babies come from?” it’s going to be a different talk than you’d have with 12-year-old Sally. You’d share a different amount of information, give various kinds of details and use distinctive language for each conversation.

Trust your intuition. You’re the expert on your children. You know their personality. You know what is knocking around in their heads, what makes them nervous. You know where they are developmentally, how much they’re going to be able to understand and how much detail they need. Always trust yourself and your knowledge about your child. Watch for cues from your child. If the child is not ready for the conversation, you may want to wait. But sometimes we don’t have a choice, and we have to move forward.

Where should the conversation take place? You might want to think about where you’ve had successful conversations with your children before. Should it be one-on-one or a family meeting? If your children are different ages, you may need to carve out time for everybody, so that everyone has some special alone time for a separate conversation.

Sometimes an unplanned opportunity for a conversation presents itself. I’d encourage you to take that opportunity. You might be riding in the car, and your child asks you just the right question. Or maybe a family member is diagnosed with cancer and your child starts asking questions about that. The door has been opened. Walk on through.

4. Validate their concerns.

As parents, we don’t want our children to worry. And yet, we have to validate their concerns. If a child says, “I’m scared about this” or “I’m worried about this,” don’t say, “Well, don’t be!” If you do that, you might accidentally imply the child is wrong for feeling that way. Instead, you might respond, “I hear that. I get that. I’m sorry that you’re scared. Let’s talk about ways we can make you feel better.”

During conversations, be sure to ask the child questions, such as, “Do you understand what we are talking about?” What did you think? How are you feeling about this? What was that like for you?” Helping them think out loud about the topic is part of developing their communication and decision-making skills.

Why are all of these issues important? First, we’re building trust. Your child will feel safe asking questions. If you have an open communication policy in your home, your child will be less likely to keep secrets from you, which as a parent is what you want, especially as they get older.

Second, you’re priming your child for learning. The more comfortable and fluid these conversations are, the better your child will be able to benefit from the discussion and learn from it.

Third, open communication decreases anxiety, worry, fear—and maybe the biggest obstacle—feelings of isolation. Having open communication makes your child feel a little less alone.

A word of encouragement.

I want to provide a little bit of reassurance to you. There is no one, right way to talk with your child about a life-threatening disease or any other difficult topic. And you don’t have to do it all in one conversation. In fact, you won’t. It is an ongoing conversation.

As your child develops and grows, and new issues come up, the conversation will change and evolve. It will be more of a graduated approach. If you need more help to have difficult discussions, there are therapists, counselors, psychologists, genetic counselors, mental health providers, child life specialists and others who can offer you additional advice and support.

Above all, give yourself grace. Give yourself the credit you deserve for supporting your child through this difficult time, including having these difficult conversations.