This year, approximately 2 million people in the United States have learned or will learn they have some form of cancer. Many of those people are the parent of a child younger than the age of 18.
“Being a parent with a child at home does make for a different cancer experience,” says UNC Health clinical psychologist Justin Yopp, PhD. “Parents worry about how their cancer will impact their children, their ability to be there for their family, and how to talk with their children about cancer.”
If you’re one of those parents, know that there are people who can help. Dr. Yopp and Cindy Rogers, JD, co-lead UNC Health’s Parenting with Cancer Clinic, which helps parents with cancer talk to their children about their diagnosis and prognosis, manage the increased stress on the family, and address legal and financial matters so that a parent’s long-term wishes for their family are documented. The clinic is open to any person being treated for cancer at UNC Health who has a minor child.
Dr. Yopp and Rogers offer this advice.
1. Communicate with your children about your cancer.
It’s natural to want to shield your child from something as difficult as cancer, but it’s important to have open, ongoing conversations about your diagnosis, treatment and prognosis, even if they are young.
“Be honest with children about what’s going on,” Dr. Yopp says. “You may not need to share all the details, depending on their age, but help them anticipate changes they’ll see, such as changes in your appearance or how you’ll feel because of side effects from treatment.”
These conversations aren’t easy, but UNC has a new, free online resource—Families Addressing Cancer Together (FACT)—that provides personalized language for these conversations. When you sign up, you provide information about your treatment plan and prognosis, as well as the age, development and temperament of your child. You immediately receive customized scripts and suggestions for how to appropriately frame and explain common concerns related to illness, treatment and fears about death.
As your situation changes, you can update your profile so that you get additional guidance, such as explaining what it means that you need another treatment or that you’ve gone into remission.
Part of being honest with your children is not promising the impossible or things you’re not sure of, as much as you don’t want your child to worry.
“You can’t promise the future or a certain outcome, but you can promise a process,” Dr. Yopp says. “You can promise that you’re going to work with really good doctors and take the medicines that they think will help. You can promise to answer any questions they have and to keep them updated.”
2. Be ready for a range of responses.
Children will respond to this news differently.
“There’s not a right or wrong way to react,” Dr. Yopp says. “Some kids take it very hard and get tearful, while others want to go play video games, which might mean they’re not worried or that it’s too much for them to talk about at that moment.”
You know your child best, so pay attention to their reaction and respond appropriately—maybe your child needs more one-on-one time or extra assurance that a plan is in place. The FACT website has guidance for working through follow-up questions or asking a child about how they’re feeling to keep the conversation going.
“Don’t let your worry about the reaction be the reason you avoid the conversation,” Dr. Yopp says. “You might think you shouldn’t disturb your child in the weeks before a big exam or a volleyball tournament, but it’s better to communicate sooner rather than later, so that your child hears it from you. It’s a way to build and maintain trust in this process.”
It’s normal for your child to be upset and struggle with the news at first, but if you notice ongoing changes in school performance, sleep or appetite, or if your child is no longer interested in participating in activities or being with friends, they may benefit from meeting with a mental health professional.
3. Maintain routines and expectations, with some flexibility.
Your children will benefit from routines and rules remaining the same.
“Expectations around behavior and responsibilities can remain the same, and if your children have soccer practice, band and chores, keep those going,” Dr. Yopp says. “It’s a new and different time for a family, so it can be good for kids to know that not everything has changed.”
But be ready to give yourself grace when that’s not possible.
“Know that some days, it’s not all going to happen because there’s too much going on,” Dr. Yopp says. “When there is going to be some disruption to routine, it’s much better if kids are told in advance, so communicate if someone else will be doing the carpool or if they’ll be seeing grandparents more often.”
Some kids may be eager to help out more if a parent isn’t feeling well, while others may not want additional responsibilities. While every family’s needs are different, consider whether you’re making an appropriate request of your child or if it’s a task that could be given to an adult who has offered to help.
“We really try to discourage situations where a child is put into a more adult role of caregiving,” Rogers says.
4. Document your plans for the future.
Your doctor may be extremely optimistic about your prognosis, but this diagnosis still presents an opportunity to get your legal and financial plans in order if they aren’t already.
“There are things parents can do to secure the future of their kids and family,” Rogers says. “We want to take the stigma off estate planning. If you have minor children, planning for their support and care is something all of us should do, regardless of whether you have a serious illness.”
An attorney can help you determine which estate planning documents are important for your family. A comprehensive estate plan may include an advance directive for healthcare, will, designation of guardianship of a minor, trusts and powers of attorney.
“Thinking through and writing down a plan for caring for your family’s future can relieve stress and worry,” Rogers says. “Then you can focus on your treatment and getting well.”
5. Acknowledge your own emotions and model coping skills.
You don’t have to always be stoic in front of your kids.
“It’s OK to be emotional in front of your children, as long as you provide some context as to why Mom is crying or Dad is upset,” Rogers says. “When you explain why you’re feeling the way you are, it takes the scariness away.”
In fact, acknowledging that you’re upset can help when you’re explaining to a kid why you don’t feel well enough to attend their chorus performance or basketball game.
“If you’re an active mom or dad and really value that, and now you can’t do those things, it’s OK to be disappointed,” Dr. Yopp says. Even if treatment goes well, “there is probably going to be sacrifice and loss—in your ability to do things, your physical health, in a future that used to seem more predictable. Acknowledging that is a big part of the adjustment.”
It’s important to separate that sense of disappointment from guilt, Dr. Yopp says. Guilt implies that you’ve done something wrong, but not being able to show up to the school play because you’re ill is not your fault.
“You may not be as hands-on as you’re used to being, but hopefully, you’re sacrificing things now for a better and longer future,” he says.
And while this is an experience that no family wants to go through, it does provide a way to model coping skills for your child, building resilience.
“Cancer can make you feel like you’re not always in control, but you can be in control as a parent,” Dr. Yopp says. “You’re showing kids how to go through a hard time, and the conversations you have during this time can be very connecting. It is an opportunity for the family to become closer.”
If you have concerns about your cancer treatment, talk to your doctor. If you need a doctor, find one near you.