Ask and Answer: What Do You Want to Know?
It is very common for parents who deal with a cancer diagnosis to worry about the question of whether to tell their child about the diagnosis, how should the topic be addressed and when is the right time to begin such a discussion.
Many parents are concerned that by discussing the parent’s diagnosis with their child or adolescent that they may cause the child or adolescent distress. It is hard to imagine how to protect one’s children from unnecessary burdens but also include them in this very important process. Parents also worry that their child will ask them questions they will not know how to answer, such as “Are you going to die?”
HERE ARE SOME GUIDELINES TO ASSIST YOU AS YOU THINK ABOUT THESE ISSUES:
While you may worry that talking to your child about your/your partner’s cancer diagnosis may increase their anxiety, research suggests the exact opposite: talking to children about a cancer diagnosis has helped maintain the child’s trust, alleviate their distress and facilitate communication about their feelings and concerns. Open communication reassures the child that the family can cope with the illness and that they can trust their parents to take care of them.
Evidence also indicates that often children’s anxiety is related to sensing a change in the family dynamics without knowing the underlying reason, learning about their parent’s illness second hand and to their inability to discuss their concerns with their parents.
Once there is an open discussion about the cancer diagnosis and children are given age appropriate information about what to expect from treatment related events (upcoming surgery, visits to the hospital, loss of hair), their worries can be addressed and they can go back to focusing on their own daily routines.
While you are the expert on your child, here are some general recommendations to address how to talk about a cancer diagnosis with children:
How to address the illness?
We suggest using the real word, such as “breast cancer” or “leukemia”. By telling a child that their parent is “sick” or has “bad cells” or a “boo-boo” you may avoid using the word “cancer,” but the child may have difficulty distinguishing between a childhood illness and their parent’s illness. It is important to explain to the child that there are different types of cancer and that not all cancers have the same course and treatment. Such clarification will help your child make a distinction between your diagnosis and other potentially confusing information they hear about cancer in the media or from other children at school. It is also useful to encourage your child to share with you the information he/she may hear about cancer in general. By sharing such information, you can help your child not feel alone and also clear up potential misconceptions and misunderstandings.
Who should tell the child?
It is preferable that your child hears about the diagnosis from you, with or without the presence of a supportive person (partner, parent, family member, or counselor). If your child overhears the information he/she may feel excluded or not important. Also, your child may interpret the situation as “very serious” and “a secret” if they simply overhear a discussion about the diagnosis and be unable to talk to you about the fears and worries that come up for them. Be honest with your child. As such, you will be able to maintain their trust and be the primary source for both what they learn about cancer and for giving them the support they need. Maintaining trust is the most important part of any communication and will help to decrease anxiety over the long-term.
When is a good time to discuss the diagnosis?
It is usually easier to introduce a medical diagnosis when put into context. Your child will better grasp the diagnosis when it is related to a tangible event, such as a medical check-up or surgery. Also, any change in a medical condition would also be an important time to talk to your child and prepare them for future changes.
Is there any value in talking to a child about a diagnosis if the child cannot understand the complexity of the illness?
Open communication is one of the strongest predictions of a child’s adjustment to parental illness. Children do not need to understand everything about a cancer diagnosis— they need to have a way to understand what is happening to their parent and to cope with the changes it may create in the family. It is just as important to help a child understand what aspects of their life will not change and stay the same so they can retain a sense of stability.
How to take into consideration my child’s age?
Depending on your child’s developmental stage there are some things you to keep in mind. Younger children (3-7) tend to engage in “magical thinking” where they believe that something they thought or did caused their parents illness. It is important to reassure your child that they are not responsible for your illness. Also, younger children may interpret a parent’s inability to engage in physical play (after surgery or chemotherapy) as a rejection. Talking to your child about the impact of your illness on your parenting abilities can help your child construct meaning, and not take certain behaviors personally. School aged children (7-12) may benefit from some general education about cancer and specifically, information that cancer is not contagious. They may respond with more physical pre-occupations and concerns about how the cancer will affect their parent. Teens (13-18) may become remote or seem more interested in how the diagnosis might impact their own plans, not because they do not care about their parent but because they are in the midst of their own developmental process and struggle to incorporate changes in the family when they are going through so many changes themselves. All children need to be reassured that they will be taken care of and all children can be included in doing small things to help the parent in treatment or the family. It is also important with older children to address the issue of using the internet to find out more information and the ways in which they can become unnecessarily frightened or overwhelmed by what they read.
How can I facilitate open communication?
Welcoming your child’s questions and helping them articulate questions will encourage your child’s openness. You can encourage your child’s communication by asking them question such as “Is there anything you would like to know?” or “What got you thinking about that?”
Do remember that you do not have to answer your child’s questions immediately. You can always respond by stating that “This is a very important question, let me think about it” or “Let me talk to my doctor and get back to you”.
How to respond to the question “are you going to die?”
Most parents worry about how to answer this question in a way that will not suggest hopelessness in regards to the future. You can start by exploring what led your child to think about this option. For instance, some children are concerned about who will take care of them if their parent dies. Your child is likely to be comforted by your reassurance that you are doing your best and intend on living as much as possible. If the parent’s illness is not in a terminal phase, most children are reassured by an answer of this sort “We hope not, and we are doing everything possible so that does not happen”. You can also acknowledge the difficulty of dealing with uncertainty and invite your child to share specific concerns. “What in particular makes you worry about that?”
What should you do if your child does not want to talk about the illness?
It is important for you to communicate to your child that you are interested in hearing their thoughts and feeling. Once you have done that, it is preferable that your child initiates conversations about the illness. If your child is not comfortable in sharing their thoughts and feelings with you, you can suggest other adults you trust, such as family members, close friends, teachers or counselors. It is not beneficial or possible to force a child to talk. Even though discussing the illness may potentially enhance your child’s support, imposing such a discussion may be perceived as intrusive and non supportive. Some children need to be reminded that you are available and interested in hearing their questions. Keep in mind that there are children who prefer to communicate via written notes, emails or drawing. Children often will talk when they are doing something else, such as being driven to soccer practice, or after a bedtime reading. Make extra time for these opportunities for their questions or comments and be ready to show that you are interested in what is on their mind.
Keep in mind that if your child or teen does not talk to you or ask you questions, it does not mean that they do not need you to talk to them, keep them updated or check-in from time to time. Having regular “briefings” with your children can help them to know that even though they are not initiating communication that you are still concerned about making sure that they have the information that they need.
Lastly, not wanting to talk about the illness does not mean something is wrong with you or your child. If you or other adults who interact with your child do not notice a change in your child’s functioning (at school, at home and with their peers) your child is probably adjusting fine. If you do observe or hear of changes, it may be worthwhile to seek additional support or help through the Simms/Mann—UCLA Center for Integrative Oncology if you are getting your treatment here or your child’s school counselor.
Links to helpful sites
- American Cancer Society
- Cancer Care
- Camp Kesem – Camp Kesem is a college student run summer camp for kids with a parent who has or has had cancer. A one-week sleep away camp is a chance for kids 6-16 to have a fun-filled week and just be kids. Their focus is on fun and providing the extra support and attention that they need.