Parenting with cancer

August 30, 2017 Swedish Blogger


Having a cancer diagnosis is difficult for anyone at any age or stage of life. If you have children at home, things can be a bit more complicated. Parenting is not something that can be put on hold (not unlike cancer) so it is important to understand strategies for handling cancer and children at the same time.

According to Mary Ellen Shands, RN, MN, clinical program manager and family consultant at Cancer Lifeline, parents try very hard to keep their children’s lives on track while they are going through treatment or still feeling unwell after treatment is finished. They are concerned about keeping the routines in place that make life easier for kids to get through the day-to-day tasks of life. This is especially true for parents of young children. Parents are thinking about how they will be able to guide their children through uncertainties while their health and feeling of well-being may be unpredictable. Parents want to protect and nurture their children above all else and it can be overwhelming to feel that you are not going to be able to meet these goals as a result of cancer treatment.

To kids, both school-age and adolescents, their parent with cancer may or may not look any different so it is hard for them to understand sometimes that mom or dad are not feeling well. The variation in responses to cancer treatment makes it difficult to predict how a parent is going to feel during treatment.

Shands has some tips to help parents with cancer talk with their children about cancer:
  1. Be sure you are ready. Before sharing information about your cancer with your child, make sure you are physically and emotionally ready to have the conversation. Sitting down to talk with your child when you are feeling fatigued or particularly vulnerable will not put you in the best position to have this conversation. Do what you need to do to meet your own needs first so you reduce the chances of your feelings “spilling out” while talking with your child. Children pick up on their parent’s emotional state and often only take away from the conversation what they see. Practicing with someone (your spouse, another parent or a friend) can help to make sure you have the right tone and content.
  2. Keep it simple. When talking with your children about your cancer, especially school-age children, try not to give too much detailed or complex information. It can be overwhelming for them to hear details that they don’t understand. Be sure to ask what your child heard you say and what they understood. This will give you an opportunity to correct any misunderstandings and learn what meaning your child made of what you shared. Sometimes children create a “story” that can be scarier than reality.
  3. Listening can help a child more than talking. Find out what your child’s story is about your cancer. Use open-ended questions to help your child put words to what they are thinking and feeling. Try simple responses like “go on,” “tell me what you were thinking about when you said ________” or “help me understand what that meant when you said ___________.” This approach will help you uncover questions, worries or concerns your child might have about your cancer.
  4. Don’t forget to check in with your kids on a regular basis. Again, schedule a time to talk when you are feeling up to having the conversation. Remember to listen and use open-ended questions during your check-in. Questions you might ask could be along the lines of, “We haven’t talked about my cancer for a while, I am wondering what you are thinking about it these days?” or “I know things have been different at home with my treatment schedule and doctor’s appointments, what’s it been like for you?” Do not be surprised if your child does not respond with a lot of content; the important part here is that you are letting your child know you are open to conversation about the cancer. This is key to setting the stage for future discussions when they may have questions or concerns to share.
  5. Adolescent children require a different approach. They are trying to establish their own identity, trying to slowly separate from their families. They are unsure about where they fit in the world. It is important to let them set the stage for when and what they want to know about your health. Again, less may be more in terms of details, but check in with your adolescent about how much detail he or she would like. Inquire about how often they want to have updates and how they want to receive information. For example, do they want a text message/email or would they prefer to talk with you in person?
Patti Carey, leader of the After Breast Cancer series at the Swedish Cancer Institute, has some suggestions for talking with kids based on her own experience:
  • It is important for children to know that cancer is not only affecting their family but that others are having the same experience.
  • Kids need assurance that they didn’t do anything wrong and their parent getting cancer is not their fault.
  • Humor can be helpful for coping.
  • Use the opportunity to teach your child about medicine and science.
  • Let other adults that are interacting with your child know that you are going through treatment so s/he can get extra support.
Cancer Lifeline holds a monthly support group for young adults (ages 20s to 40s) with cancer. If group members would like more detailed support and information related to parenting and cancer, a presentation can be scheduled during the first hour of the group. Cancer Lifeline also offers parenting meetings facilitated by family consultants who can speak on the phone or meet with parents/guardians to help find ways to support children when a family member has cancer.

Shands mentioned several other agencies that specialize in working with parents and children around the topic of cancer:
  • Cancer Pathways offers family support programs
  • The American Cancer Society has an FAQ page for parents. 
  • The National Cancer Institute offers a booklet for talking with teens
  • The American Brain Tumor Association offers suggestions for talking with children.

A few books that Shands recommends are:
  • When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy Harpham (2004).
  • How to Help Children Through a Parent’s Serious Illness: Supportive, Practical Advice from a Leading Child Life Specialist by Kathleen McCue and Ron Bonn (2011). 

At the Swedish Cancer Institute’s Cancer Education Center, you can find a section in the loan library dedicated to children’s books, and education materials such as:

  • Supporting the Children of a Seriously Ill Loved One
  • What Do I Tell the Kids?
  • Helping Children Understand Cancer: Talking to your kids about your diagnosis

There is also a no-cost program from children ages 6 to 11 and parents called "Children’s Lives Include Moments of Bravery (CLIMB)." Registration is required; call 206-215-6127.

This article is from the Fall 2017 issue of Life to the Fullest, the newsletter from the Swedish Cancer Institute (SCI) dedicated to those with cancer, cancer survivors, and their family members and caregivers.

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