I saw this article written by Dr. Ruth Steinman on the University of Pennsylvania’s Focus On Cancer blog and it really resonated with me. I remember like it was yesterday (when in fact it was 3 years ago) the day Alan & I told our 3 young children that he had cancer. Alan and I followed the advice below- and it’s one of the main reasons why I believe our children are doing so well today.Ruth Steinman, MD, is a clinical associate professor of psychiatry at Penn’s Abramson Cancer Center. In this blog, Dr. Steinman discusses how to tell children about a cancer diagnosis and offers suggestions on how to make the conversation easier. “Children who are old enough to speak need to be told about a cancer diagnosis. Begin by identifying your illness by name without confusing euphemisms. Discuss how it will be treated and what will happen to you during treatment (losing your hair, feeling tired and so on). Tell them who will be taking them to soccer practice, cooking their meals and how their day-to-day lives may change.
Don’t let them overhear itPrevent your children from hearing the news of your cancer by overhearing. Let them know what is happening and what to expect directly from you. Tell them you will let them know any new information that comes up.
Welcome all questions warmlyYour child needs to know they can talk to you about any topic. Be available to talk about what is on their minds at times when they are likely to talk to you such as in the car, while doing an activity or at bedtime.
Try to tease out the “real” question your child wants to ask“What are you wondering about?”Often the real worry is something much more concrete and readily addressed. For example, children may ask: “Will you be better by summertime?” Rather than a question about prognosis or a request for a guaranteed cure, they may be asking if they will go to summer camp as usual. Remember: not every question requires immediate or detailed answers. “That is a good question. Let me think about it/discuss it with daddy/ask my doctor/ and get back to you.”
Respect children who wish not to talkYou can still provide basic information in order to prevent confusion or surprises even with children who don’t want to talk. Check in from time to time and ask what they are hearing and make sure they are getting the right amount of information. Instead of asking: “How are you feeling about Mommy’s cancer?” ask: “How is it working out with Katie’s mom picking you up from practice?”
Don’t let your child worry aloneKids often hear or read frightening information. Tell your children you understand that they may feel more comfortable talking about what is worrying them with someone else and that you will arrange this if that is the case.
Try to maintain your child’s usual scheduleAssign a point person for each child. Post schedules and calendars for caregivers. Keep the channels of communication open with key caregivers who provide appropriate emotional support and ensure your children’s routines are disrupted as little as possible. Let your kid’s teachers know who they can go to if they are having a hard time. Make sure the teachers do not share the information with other children in the class. School should be free of cancer talk unless your children initiate the discussion. Ask the teachers not to share information about cancer or about someone else who went through a similar situation. This information, while given with well meaning, can be burdensome to children.
Carve out protected time for the family
Turn off telephones and tell friends and family not to visit during these times so that your children have your full attention without distractions. Ask about their day. Try to use this time to focus on the children and not on your illness.
Have support around hospital visits
Hospital visits often help children feel less worried. Have extra support people accompany your children to the hospital to allow you to adjust the length of the visit to what your children can comfortably manage. Younger children should have toys available. When visits are not possible, cards, drawings and such are helpful. Be sure to have an adult check in with each child after the visit to answer questions about what they saw or heard which might have been confusing or worrisome.
Don’t lie, no matter how much you think a lie will protect them. Children are less anxious when they can trust that the information they get from you is true. We all want to promise our children that we will never die. It is important not to make promises you may not be able to keep.
Talking to children about end-of-life
Acknowledge that sometimes people die of cancer. Reinforce the plan for your treatment and the hope that it will keep the illness from getting worse. The most important worry for children is who will look after them if something happens to you. You need to assure them that no matter what happens, they will be cared for.
Children need to know they are loved and why they are loved. It is also important to:
- Maintain a routine for kids of all ages.
- Include children in rituals but explain beforehand what will happen: the coffin, people crying, that they can leave at any time and this is who will go with them (family or friend).
- As time goes on, demonstrate that it is ok to discuss good and bad memories. Help your children find a way to maintain an emotional, internal connection.
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