Discussing Cancer With Your Children

April 12, 2023

Getting your cancer diagnosis was probably one of the hardest days of your life, and as a parent it can also be incredibly difficult to think about how you're going to tell your children. Emily McDaniel (bio at the end of the article) is the Child Life Specialist at UC Davis Cancer Center and is here to help! She's provided us with some tips and ideas of how to have these difficult conversations about cancer with your children.

Pictured - Emily McDaniel, Bradley Steiger and Gwen Garber

Pictured - Bradley Steiger, Gwen Garber, and Emily McDaniel

What is a child life specialist?

Child life specialists are certified healthcare professionals who are trained to help children and families understand and process illness, injury, trauma, hospitalization, and grief. With a background in child development, psychology or counseling, child life specialists use a developmental lens as they work with families to create care plans that meet the psychosocial and developmental needs of each child.

How much detail should I share with my children/grandchildren when they ask about my cancer/treatment/appearance changes?

Through sharing honest, developmentally appropriate information with children throughout a medical situation, you are able to maintain a trusting relationship and provide them with necessary support. Typically, it is best to wait until there is a definite diagnosis before sharing news about an illness with children. However, if an illness is significantly changing a parent’s abilities prior to a clear diagnosis, children will need to know that a “work-up” is underway.

What information to share:

Share background information to begin the conversation. Name the illness and emphasize to children that they did not cause it and cannot catch it (if this is correct).
Find out what the child may already know about the illness.
Explain the illness in an age-appropriate way. Check for understanding.
Focus on what is happening right now, including treatment plan. Check for understanding.
Discuss any changes they will experience, including any impacts from treatment/the illness. Check for understanding.
Allow time for questions.

Realistic expectations:

Children process and cope through play. Expect children to want to engage in play or any normal activity during or after your conversation. Nonverbal outlets will be especially important for children who process best in this way – encourage these as much as possible.
Information will need to be repeated – expect regular questions and plan to set up routine family meetings after the first conversation. Plan to include different age-appropriate activities that may promote conversation (See activity at bottom: Wonders & Worries Family Communication Jar).

What if...

Emotions take over the conversation:
- Provide time for emotions to be shared.
- If emotions are overwhelming, come back to the conversation later.
- It’s okay to show your emotions. When parents show how they are feeling, this helps normalize typical emotions that all may share.
You are unsure how to respond to certain questions that may come up:
- Unexpected questions: “Gosh, that’s a great question. Let’s think about that together…”
- Big questions don’t always need an immediate response. It’s okay to say, “That’s a great question - let’s write that down. I’m going to think about it and talk to ________ (co-parent and/or doctor) and come back to that.”
- To help clarify a question: “Can you tell me more about what you are asking – are you asking how dad got sick?”
Child isn’t interested in talking about a medical situation:
- A child who is quieter at baseline won’t typically become more talkative during challenging times.
- For children who prefer nonverbal methods of communication, some ideas may be to communicate basic information through a shared notebook or emails.
- It’s important for these methods to be accompanied with time and space for open dialogue as well, especially to check how the child is understanding what has been shared.

Radiation therapy made me very tired, and my kids would ask why I couldn't play with them. How can I give them the fun they need but also get the rest I need?

Yes, illness or treatment related symptoms may greatly impact how you function as a person and parent. Helping children understand symptoms and why they are happening may promote coping and prompt help and cooperation.

Common symptoms may be fatigue, pain, memory challenges, changes in appearance, lowered immunity, emotional imbalance, and others. Whatever symptom(s) you are experiencing, consider sharing these key points with your child:

Name the symptom and what is causing it.
The radiation therapy is making me feel very tired today.
Provide a child-friendly way to describe how the symptoms are impacting your body/ability to parent in the way you typically would.
My energy is like a car’s gas tank – when I’m feeling good and have a lot of energy, my tank is full; when I’m low on energy, there just isn’t much gas in my tank. I won’t be able to play with you like I normally would today.

Create a coping plan.
Because I’m feeling so tired, it will be great for you to play with friends after school today. How does that sound? When you get home before dinner, let’s check in and see how my energy tank is doing.

Plan for activities you CAN still do together.
Let’s make a list of activities to do together when I’m feeling so tired? I know I’d like to add watching movies, playing uno, coloring, and we can think about ideas for my more energetic days. What would you like to add?

It’s hard to know how symptoms will affect a family situation some days, so having family coping plans mapped out in advance can help. Some lists to create may be, “How to help when mom’s feeling _____,” or “Activities we can still do when mom is not feeling well ______.” Collaborating as a family on these ideas is best so that everyone feels included and can share ideas that will support the family.

My kids were startled by the side effects (facial rash) and equipment (port) from my chemotherapy. What can I do to help them understand what chemotherapy is, so it doesn't frighten them?

A great place to begin with children is to introduce concepts using books. Stories can be therapeutic as they help children process information, open up dialogue, and elicit further self-reflection and understanding. Using books in this way is called bibliotherapy. Through story, children can enter into challenging topics from a distance. Children are able to learn how characters may respond to similar situations and naturally think about applying those ideas to their own experiences. There are many books for children about parental illness, including cancer, and it may take some researching to find the right book(s) to meet the specific needs of your family.

Another way to help children better understand medical interventions that a parent may be experiencing is to explain the term in a developmentally appropriate way and allow them to become more familiar with what it is through a hands on activity (e.g., port coloring page, manipulating the actual item or something similar and incorporating into their play, or doing an activity that emphasizes learning points about the item). If you do not have access to a child life specialist, connect with a teacher at your child’s school to see if they have any ideas and use websites like Kidshealth.org, which may provide strategies for simplifying complex medical information.

How should I prepare for the reactions of small children in public places when they see my facial disfigurement caused by the cancer surgery?

This can be very challenging and brings to mind ideas that promote coping for any person re-entering public environments after a significant change in appearance (i.e., cancer, burn victims, etc.). People often stare due to curiosity or concern and not intentionally to be rude – this is very true for children as well. General ideas to promote social confidence and control when children are observing a new and different appearance are described below.

Tone of voice: A friendly and enthusiastic tone of voice can immediately help children realize that you are approachable and open to questions [if you are open to questions]. Example: “I have an illness where I needed to have surgery. My body is working to heal from the surgery.”

Eye contact: Sharing eye contact with a child acknowledges their presence and their interest in your appearance; this can also open a line of communication for any questions/comments.

Smile: Smiling exudes a sense of warmth and kindness. If children are staring or seemingly taken aback by your appearance, smiling can help create a bridge for connection.

I honestly didn't know what my kids would need, and they didn't ask, but some emotions came out after my treatment was over. What general advice would you give to help our kids adjust, even if they don't express concerns.

A parent’s illness can impact children and teens in varying ways at different points during an illness. If we think about this, in addition to existing typical developmental stressors and the busyness of life, schedules and routines may be in flux, and worries heightened due to a parent’s illness. With this, children may be spending so much energy just trying to hold on for the duration that they don’t notice all of their feelings, and definitely aren’t thinking about the importance of expressing feelings and finding outlets for coping. That said, it can be hard to determine how a child is coping throughout a parent’s illness.

For a proactive approach in supporting children and teens during this time, your innate parenting expertise will come in handy. In addition to ongoing communication about a parent’s illness with children (as described above), you will want to build on the natural strengths and coping outlets a child has. As well, connecting children to support group programming can be helpful where they become part of a community with other children going through similar experiences.

In thinking about how to assess a child’s coping throughout an illness, some initial questions to think about may be:

Is your child able to engage in regular activities (e.g., family life, school, and friendships)? It’s normal to have stress in at least one of these areas during an illness.
Are earlier coping strategies helping with this situation?
Is the child trying to create a sense of control in other ways (e.g., relentless acting out, repetitive behaviors, etc.)?

If behavior isn’t getting to a new normal that is manageable, persists for more than a few weeks and/or it’s getting worse, connecting with a mental health professional for a more formal assessment and ongoing support will be best. Your child’s pediatrician can help you start this process.

Wonders & Worries Communication Jar:

Focus: Family Communication and Self-Expression

Goal: Build routine to communicate about feelings or questions children may have regarding a parental illness.

Materials needed:

Strips of paper
Crayons/pens/markers/paint pens
Jar or mailbox container to put strips of paper in. This container can be plain and simple, or the family can decorate it using various materials.

Instructions:

Let the children know that regular family meetings will begin throughout each week or month (whatever the agreed timeline is).
Encourage children to write or draw ideas on the strips of paper whenever they have a thought, feeling, or question about things (parental illness or other). For younger children, they can also place items in the container that may represent or help communicate how they feel. Parents should also add their thoughts to the container to model the process of sharing feelings and questions.
When it’s time for the family meeting, you can start by expressing appreciation for the family working on the activity together. You may want to share your hopes for the meetings, review a few general “rules” for the meeting (e.g., use a “talking stick” (or other item) – when you have this, you may talk, otherwise it is your turn to listen.”), and emphasize that there is no right or wrong way to feel. Also, important to mention how feelings typically come and go (i.e., you will get a reprieve from hard feelings).

Organizations that Support Families Navigating a Parent’s Cancer Diagnosis:

References:
McCue, K., & Bonn, R. (2011). How to help children through a parent's serious illness. St. Martin's Griffin; Second Edition, Revised.

Rauch, P. (2006). Raising an emotionally healthy child when a parent is sick. McGraw Hill; 1st edition.

Contact:
Emily McDaniel, MA, CCLS
Certified Child Life Specialist | Children of Adult Patients
UC Davis Comprehensive Cancer Center

Emily McDaniel is a child life specialist at the UC Davis Comprehensive Cancer Center in Sacramento, CA. Emily has worked at UC Davis for over ten years and especially appreciates getting to work with children and families during challenging points in life. Emily is afforded opportunities to partner with families to develop supportive care plans that aim to maximize child and family coping.