FAMILY CONNECTIONS: FOR PARENTS: TALKING TO YOUR CHILDREN ABOUT CANCER

Dana Farber Cancer Institute

Many parents tell us that when they are diagnosed with cancer, they're most concerned about how the disease and its treatment will affect their families. Often their top priority is to limit both the short- and long-term effects of their illness on their children.

 

When you first get your diagnosis, you may worry about how to let your children know that you have cancer. While you have taught your kids about many other important things, talking to them about your illness probably takes you off guard.

It's common for parents to feel a little lost about whether, how, and when to share this information with their children. We'd like to share what other families found helpful as they faced the challenges of a cancer diagnosis, and to describe what health care professionals think are the most important aspects of these early conversations.

Remember: There are no absolute right or wrongs. Like most of parenting, the actual words you use are not as important as letting your children know that you are there for them, and that they can bring their questions and fears to you. You may even find that as you talk about your illness, you and your children develop a closer connection that strengthens your discussions about other issues.
Each family finds its own unique way to adjust. You will find yours.

Families communicate in many different ways. Some parents know immediately that they will tell their kids about their diagnosis at the earliest opportunity. Others know they will eventually discuss the diagnosis with their children, but may delay until they have more information about the cancer and its treatment, or until the children are a bit older. Still others worry that they are burdening their kids by including them in discussions.

Deciding what to do, and when, can be an important first step

• Your children, no matter how young or old, will realize that something is wrong. If they don't know what it is, they may imagine terrible possibilities that are even scarier than a cancer diagnosis.
• If you don't talk to your children, they may eventually learn of the diagnosis from others or by overhearing a conversation. If you are the first to share the news, they will get a more accurate and hopeful picture.
• You don't have to discuss everything all at once. Don't talk beyond their attention span or level of understanding. Several conversations over time usually work better in talking with kids.
• You may worry that you won't be able to answer all your children's questions. While many parents share this concern, the truth is that you don't have to know everything to begin this conversation. When you are stumped by a question, you might say, "I don't know. That's a good question, and I'll find out the answer for both of us." In most cases, kids will readily accept this response, especially when you quickly get back to them with an answer.

By beginning the conversation, you help your family manage this new challenge. If you decide not to talk to your children, you may, without realizing it:

• Communicate that your illness is too scary to talk about.
• Make it hard for your children to trust what you say once they do learn of your illness.
• Imply that neither you nor they are up to coping with this situation.
• Place additional strain on yourself and others who know to keep a secret. This tension has impact on the entire family.

Take some time to prepare yourself

Prepare yourself by thinking about what you hope to convey to your children through your words and actions. It's perfectly understandable if you find this difficult. Talking to your children about your cancer may be one of the hardest things you've ever had to do. However, when parents give their children a chance to share their worries, they often feel a sense of relief and are able to move forward as a family in dealing with their situation.

You may want to share your ideas and feelings about telling your children ahead of time with your partner, someone from your health care team or faith community, a friend, therapist, or social worker. You may find it helpful to write down your most important points so you're able to pay attention to your kids and their reactions.

You don't need to follow a script

Talk as naturally as possible, and invite your children to ask questions early on. You could encourage them to tell you what they already know, what they would like to know, and how they think your illness will affect them and the family. Remind them that it's okay to ask you questions, and that you'll do your best to answer. As a result, you show them it is possible to talk together about hard issues.

Anticipate how you might respond to your children as you talk together. It's okay to be emotional; this is tough stuff. You may find that when you do include them in your situation, your kids feel closer to you and have a better understanding of their own thoughts and feelings.

Remember that you are talking to your children to inform and support them. You might not want to talk to them if you are very upset

When that happens, it may be better to either delay telling your kids until you feel somewhat stronger or to ask for help. You may need a chance to talk further about your own concerns first as a way to feel more ready to share with them. You can ask your partner to help out, or invite someone else to join you for this discussion. You might even consider asking this second person to lead the conversation.

This doesn't mean you have to be unemotional when you talk with your children about your illness. It's fine to let them see that you have feelings, or even to cry together. The key is for you to stay focused on their concerns and questions as you talk.

Consider also the possibility that your kids can tolerate, and maybe even benefit from knowing that you, too, are willing to share your emotions. For example, you might say, "This is all new to me, too, and I feel worried and sad right now. But we will get through this together, and I will feel better sometime soon."

When you include your kids in your family's experience of your illness rather than "protect" them from feeling upset or sad, you give them permission to have and share their own responses. You can let them know that their feelings may change over time, just as yours will.

Decide who you would like to be present

Do you and your partner both want to be there? If that's not practical, can you communicate your partner's support and point of view? Is there another adult you want to include? Who would you like to begin and lead the discussion? Is it appropriate to talk to your children when they are all together or individually (knowing that depending on ages, siblings often share with each other)?

Pick your time carefully

Ideally, plan your conversation so that you can spend as much time as needed to answer your kids' questions and to comfort them if they are upset. Try not to begin this important discussion when you are tired, pressed for time, or feeling especially ill or discouraged.

Likewise, start this conversation when your children are well rested and free of other commitments. But don't be surprised or upset if many of these conversations are quite short. If your children show signs that they have had enough, bring your conversation to a close and return to it later.

Children may need different approaches, depending on their age

To a large extent, what you say and how you say it will depend on your kids' ages and capabilities. If your family includes children of different ages, you may decide to talk to them individually or in pairs rather than as a group. In this way, you can tailor what you say to their ability to understand it.

Preschoolers

Children this young do not need a lot of details. They are very concrete and will tend to focus on the cancer symptoms or side effects that they can see, such as hair loss, rather than on what is happening invisibly inside your body. Use a doll, stuffed animal, or picture to show your children where the cancer is located in your body. Make it clear that cancer is not contagious, and that your kids cannot "catch" it from you.

Ask your children if they have questions about what will happen now that you have cancer. Answer only what they ask. Use simple, direct words. Attention spans at this age are short, so keep conversations brief, and be prepared to come back to the discussion at another time.

School-aged children

You may end up using a variety of approaches with children in this group. With younger kids, you may need to keep the discussion brief, and use a stuffed animal, a doll, or a picture to help your children understand, just as you would with preschoolers. Be prepared for your children to go off and play as though they are unaffected by your news: kids of this age may react later, or may show their response through behavior (being angry or quieter than usual) rather than words.

Older elementary school children may be familiar with the basics of the human body, so use their knowledge as a starting point for your conversation. For instance, if your children have already studied cells, you might explain that cancer cells do not behave the same way as normal cells. Provide more details, such as the name of the cancer and the basics of your treatment plan.

Emphasize that cancer is not contagious and they did not do anything to cause your cancer. Kids of all ages, including teens, can worry about this, so offer lots of reassurance.

Teens

Teenage children have heard a lot more about disease and cancer than their younger siblings. As a result, they may be quite worried, but afraid to upset you, or themselves, by asking questions. Take your cue from them whenever possible, and share as much information as they seem to want and are ready to handle. And while they may appear in control as you talk together, be prepared for some emotional response, either as your discussion continues, or at some later time. Your teen's reactions may, in turn, trigger your own feelings, which may be tough on both of you. But try not to back away: in the long run, everyone will benefit if you can develop enough trust to share painful thoughts and feelings without worrying about being judged or questioned.

Ideally, talk to your children as soon as possible after you are diagnosed

In this way, you, not your neighbors or your children's friends, determine what your kids will know about your illness. You will also prevent their finding out by overhearing a conversation or being consoled by a concerned adult who doesn't realize you haven't mentioned your diagnosis.
Let your children know if you have confided in others and what you have told them. By sharing this with your children, you help them realize that they don't have to face your illness alone, and may encourage them to talk about their concerns with trusted friends and relatives.

Provide your children with key information

• "Mom (or dad) has a disease called cancer."
• Explain that cancer is actually the general name for many different diseases in which cells that are not normal divide more rapidly than usual. These abnormal, quickly growing cells often develop into a tumor. Cancer can also spread to other parts of the body, but it is not contagious: your children cannot "catch" cancer from you.
• Talk with them about the causes of cancer. You might start by asking how they think cancer gets started. You might mention some of the known behaviors that seem to increase a person's chances for getting cancer, such as smoking or spending lots of time in the sun. You can also point out that we don't know all the causes of cancer, but experts are studying this question and coming up with more answers all the time.
• Let your kids know where the cancer is in your body, and how you will be treated. Tell them if you will be in the hospital or away from home for extended periods of time.
• Depending on their ages, you might also ask your children how they would like to respond when others ask them questions about your health. This discussion also gives you a chance to check on how much your sons and daughters actually understand about your illness, and what issues you may need to clarify for them.
• Explain to older kids and teens that your illness will probably affect the family's daily routines and responsibilities, and you will keep them posted as these changes occur.

See What children want to know for more suggestions.

Be prepared for your children to ask, "Are you going to die?"

Most parents dread this question, often because they are afraid of how they and their kids will react to the discussion. In addition, parents frequently don't know what to say. Consider saying something like, "People do sometimes die from cancer, but lots of people don't. I am not dying. I am going to take strong medicine and/or have surgery to get rid of my cancer. I will be checked often by the doctors."

Also, whenever possible, share positive information. Depending on your circumstances, you might say, "There are lots of new treatments for cancer," "The doctors have given me some very strong medicine that they think will help get rid of the cancer, and they think that I have a very good chance of recovering," "I am doing everything I can to make sure I get better," or "They caught my cancer early, before it had a chance to do much damage."

Ask your children what they have heard about cancer or if they know someone whose family member has had cancer. Children can assume that cancer is all the same illness. You can share that there are many types of cancer and treatment, and how someone is affected can be different for each person, even when patients have the same type of cancer.

See Questions parents often ask for more suggestions on how to answer "Are you going to die?" Also remember that you will have the chance to revisit this conversation many times, and that you will be able to repeat complicated information and correct your children's misunderstandings. You don't have to cover everything in one discussion.

Give your kids time to absorb the news

Over time, your children will hear you and absorb the important information, but they may not be able to do this right away. Many children initially express their reactions through their behavior rather than through words, so you may learn more about what they are thinking and how they are feeling by observing changes in their play, mood, or friendships. For instance, your daughter who says little during your initial conversation may have trouble sleeping over the next several nights, or you son may walk away wondering who is going to drive him to Little League now that you're sick.
Be patient, try to accept your kids' reactions, and don't worry unless these reactions persist over time.
"Stress warning signs in children" offers more information on figuring out when your child may be really struggling with the news of your diagnosis, and if he or she may need some additional support.

Don't expect perfection from your children, your partner, or yourself

There is no "perfect" way to have this conversation. You may burst into tears before saying a word, or snap at your partner for telling your kids to "behave," or cringe when your son makes light of the whole conversation. Forgive quickly. This is a tough time for everyone.

Remember that this conversation is only the first of many and that you can revisit important information as often as necessary

Your children may not have much to say during your first conversation with them. Try to encourage them to ask you questions or tell you their worries, but don't worry if you and your partner do most of the talking. You and your sons and daughters may frequently revisit how and why people get cancer, what side effects mean (and don't mean), and how your illness will affect your and their lives. The important thing is that by including your kids in these discussions, you let them know you are open to hearing their questions and answering them honestly.

To see article in original source, visit: http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Family-Connections/Information-for-Parents/Talking-with-Kids-about-Cancer.aspx