“Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary.” – Fred Rogers

A cancer diagnosis impacts the whole family. Many parents have concerns or questions about how and when to share information about a parent's cancer diagnosis with their child(ren). As a parent, you want to have all the answers, but when you have cancer, you simply don't. Each family copes with a diagnosis differently, and you are the expert on your child(ren) and family.

Children can often sense a change in the family. Sharing information and including them in the process can build trust and offer comfort and relief. While it’s normal to want to protect children from distressing news, avoiding the topic may unintentionally cause more worry if children are confused or left to imagine what is happening. 

The tips below are intended to offer guidance based on evidence and what has worked for other families coping with a parent’s diagnosis.

What and How to Share

• Start with curiosity about what your child may already know or understand about changes they have witnessed or overheard. 

• Offer age-appropriate information about the cancer. For younger kids, explain aspects of the cancer that directly relates to them such as changes in energy or appearance. Older kids may have more curiosity around the biological and social aspects of the disease.

• Rather than general words such as “sick” or “medicine,” consider using cancer-specific language including the words “cancer,” “tumor,” and “chemotherapy.” This strategy helps prevent negative associations with a child going to their doctor or taking their own medicine when needed. They are also likely to overhear these words in conversation, and it can be helpful for the whole family to use consistent language.

• Offer truthful information but not necessarily all the facts at once. Following the child’s lead and offering smaller amounts of information over time can be helpful. Start with the basics and build from there based on your child’s needs, age, interest, and questions.

• Share your best understanding of what to expect focusing on the treatment plan and changes in the child(ren)’s routine. Help them prepare for anticipated physical changes, such as hair loss or bodily changes impacting usual family activities or caregiving. Let children know that they will continue to be cared for and loved.

• Plan for the way you will answer tough questions that may arise and how you might want to share information.

• Explain that cancer is not their fault, and they did not do anything to cause the cancer.

• Remind children that cancer is not contagious

Communication Tips

• Being aware of and processing your own emotions surrounding the cancer is important as you prepare to share information with your child(ren).

• Know that there is never a perfect time or way to share difficult information.

• Try listening to your children with empathy and curiosity.

• Model asking for support and practicing coping strategies and self-care.

• Welcome questions. Don’t be afraid to tell your child(ren) you don’t know the answer to a question. Some questions don’t have answers, and others need more research to find an answer.

• Model a range of everyday feelings with your child to encourage healthy emotional expression. Openly talking about feelings can help children understand that a range of emotions are normal and welcome, and that trusted adults are able to bear emotions and listen to worries.

• Have a point person at your child’s school. Your child’s school community may be more sensitive to your child’s needs if they have a basic understanding of your disease and treatment. However, not everyone has to know everything. The point person can care for your child at school and protect you from repeatedly having to tell your story. This person may talk with your child periodically or may just be the person other professionals can go to if there are concerns. 

Fostering Connection and Coping

• Hold regular family meetings to foster open communication, not just when sharing difficult news. Finding ways to keep your child informed, even when there are no changes, helps provide reassurance that you will include them if/when there are important updates. 

• Maintain routines to the extent possible or communicate if there is a known upcoming change. A predictable routine can help children cope with some of the changes and uncertainties a cancer diagnosis can bring.

• Institute “cancer free” time, such as a meal or day each week where you can focus on other topics and take a break from discussion about cancer.

• For kids who can read and write, a worry/question jar can offer a place to connect and share concerns. Family members can write down concerns or questions that might be hard to ask, and the family can gather to review the questions. It is always okay to say "I'm not sure" or "I will ask my doctor more about that question.” The goal is to find new ways to communicate with one another. 

• Include children in your care and treatment. For example, are there questions they want you to ask the doctor?

• Consider your child’s strengths and interests and offer opportunities for creative and play-based expression. For example, art materials, dolls, puppets, and journaling allow children to express emotions if they find talking is difficult.

• You can say no to your kids. You realize that your cancer treatment is putting stress on your family, and you may have the urge to "spoil” them to make up for this fact. You may even feel guilty for having to expose them to the reality of illness at a time that “should” be more carefree. Don’t change your rules and say yes when you would have said no, as this will confuse them. They need to know you are still active in your role as a parent – which includes setting limits. Limits provide boundaries that are important in helping children feel contained even amidst illness. 

• When you are sick, children want to help, but they want to help in ways that don’t burden them. Decide together as a family what everyone’s jobs will be in this cancer experience. Having a job gives a child a sense that they have some control over the situation. Make sure the child understands that ultimately you and the doctors are responsible for your care and for treating the cancer, but they can help be a supportive part of the team.

Consider meeting with an Iris mental health clinician for the following support:

• Explore questions and concerns about sharing information with your child(ren) about your diagnosis

• Provide education around anticipating common communication concerns 

• Help tailor information to the specific needs and developmental stage of your child

• Problem-solve specific issues around your child's adjustment and coping 

• Identify strategies for helping to maintain routines and consistency for children coping with a parent's diagnosis 

• Offer coping strategies for your own emotions related to cancer and disease transitions 

Trust your knowledge of your child. Generally, parents know their child(ren) best. They understand how each child has experienced and navigated the world this far. Know that your child will bring their unique personality, temperament, and coping style to this situation. You will see your child under stress and a bit challenged by all the changes, but they will still be your child. Support them, comfort them, and love them with the understanding that you have always had of them.