You are in a position to improve the outcome for your patient’s and their families emotional outcome. When they understand that parenting help will reduce their stress and anxieties. When you recognize and refer families in need You become the provider of choice – a trusted advisor, who understands the connection between emotional and physical well-being.
Our program is geared towards parents. How many of you are parents or will be soon? I would like each of you to put yourself into a parent mode – if you were just diagnosed with cancer, your first thoughts will be… No one is prepared for what to say or do it this situation. Parents never pictured themselves here. It is not instinctual to know what to do or say to kids in this situation. Today, we will cover what a family may experience. What children and teens may deal with when parent is first diagnosed …how they interpret what is going on and what parents can do. Let me preface our discussion: all families know their children better than you or I do. It is ultimately their decision on how to handle their crisis. We will be talking about what a typical family may experience and age appropriate approaches to those events and feelings.
A quote we learned when Kate was first diagnosed “People don’t get cancer – families get cancer.” So the whole family needs to be part of the plan. The first thing to be emphasized Everyone deserves the truth. Truth=trust. It is hard to rebuild once trust is broken. Less stress if children believe they will always be told the truth when something important is happening. The worst way to hear it is to overhear it. (other kids, parents, accidental phone calls, Facebook) Even if the don’t overhear it, Children sense the unspoken. They will know something is wrong even if they aren’t told If they don’t have an accurate explanation of what is happening in the household, children often “fill in the blanks” and assume they are to blame. They will create their own explanation in which they are somehow at fault or inadequate. Without an explanation, children will worry and will not know who to turn to with those worries. No one should be left alone with their worries. Studies show that children given specific information about a parent’s illness have less anxiety than those without the info. Because Parents haven’t anticipated this conversation, so they often need help. How do I tell them? When do I tell them? What words should I use? The truth is….it’s cancer. Telling them about the cancer needs to be simple and age appropriate. They need to know what to expect.
GKW provides access to Parenting educators . They can help parents get comfortable with using the word cancer. They can help explain that at different ages, the kids will absorb information differently and help them find the right way to talk to their kids.
Take a minute to think of the precious 3 year old you have known in your life. It’s an innocent, funny age. They ask a lot of questions. When first told of a parent’s cancer, they will ask 3 questions…about themselves. Read the slide
Preschool children are egocentric – the world revolves around them and they are at the heart of everything. They only see themselves from their own viewpoint. They are also associative thinkers: they connect unrelated things. Nothing is by chance or luck. A little girl might t hink: my brother wants a dog, I don’t. So all boys want dogs and girls don’t Together, being egocentric and having associative thinking , is called “magical thinking”. An example: If a 4 year old wants a pony, she might believe that if she puts piles of grass and carrots in the backyard, the pony will appear. Likewise, if the pony doesn’t come, she will think it’s because she put the wrong things out. They believe if something happened, they somehow caused it – whether it is a good thing or not. They control the world That gives them control because if they cause it, they can fix it.
At this egocentric age, the child will be concerned about themselves. They will ask: (Slide) Use accurate terms: Breast Cancer, Brain Tumor, not “bump” or “boo-boo.” If those terms are used, the next time they get a “bump or boo boo”, they will think they have cancer. When they ask if the other parent will get it too, Not worried about the other parent, but ….next slide
The child is looking for reassurance that he will be taken care of. And that he is still loved. His magical thinking can lead him to think if you can’t be home as much due to medical treatments, you must like medical treatments more than him. At this age, the parenting educators and counselors will help parents find the words: The message: “I would always rather be with you and take care of you. Taking care of you is the best job in the world.” “Your dad and I will make sure you are safe and taken care of, even when we can’t be with you.” Being prepared to say these types of messages, will be very reassuring to the child.
Now you have a school-age child. Picture that age child in your mind. They have expanded their world, with teachers, friends and activities playing an increasing role. Their questions won’t be that much different from a pre-schooler but will have Slight variations.
Where a pre-schooler will blame themselves, a school age child may believe the parent is to blame. Their experience is with colds and strep throat. Can pull away from parent if they think it is contagious, blaming the parent for not letting them get close. Parents prepared with Simple explanations can prevent misunderstandings: “Cancer is caused by Something goes wrong in the body Can’t be caused by anything people did or said”
Examples: The school age kid is very happy with his busy life of play dates, sleep overs and soccer practice. They have rules and routine in school and sports. It is important to them – it helps them stay balanced as they explore the world and start to leave the safety of home. Counselors and educators can help parents find solutions to help them balance the kids’ needs with the less predicable world of medical treatment. Establishing back up plans and finding other trusted adults to keep as much normalcy in their lives as possible. will help them cope.
Will you die? School age kids understand that death can be permanent. (Read Slide) A prepared parent might say something like: “Right now, the doctors are working on a plan to help me get rid of the cancer.” Reassuring the child that smart and capable doctors are in charge and doing everything possible. Parenting educators can help them avoid pitfalls such as making promises they may not be able to keep. If they say “I am going to get better…” and don’t, they will blame the parent.
Now you have a teenager : moody – funny and happy one minute, then sullen the next ; pulls away from family events - life centers around their friends and activities. Too cool for words and parents are lame. they will think about themselves. Like pre-schoolers, this is an egocentric age. Teens will say…
While they are egocentric, they Will understand more and will have more concern about the parent. They have heard a lot about cancer (either from life or media) and will understand that outcomes are not always good. In fact, they might think they are always bad. (One high schooler we know told his friends that is mother would probably die before he finished high school, even though her prognosis was good. When she heard that from a teacher and asked him about it, he told her that he had seen enough shows to know that cancer ends with death. ) Their decision/logic portions of the brain are not fully developed, so they lead with emotions (explains the moodiness). using appropriate terms for teens is very important because the will go to the internet. Parenting educators/counselors will prepare parents for this and help them set expectations on what they might find. They will also Suggest the parent go on the internet with them, to help them understand what they are seeing.
Am I allowed to have fun? How can I help? Look grown up, but are not adults and shouldn’t assume adult responsibilities Want to be normal… Brett: group therapy story
While they want to be independent, they are also worried. They need the parent to understand that they want to be involved and they want to know what is going on They will be thinking… (read the slide) Again, if a parent understands this stage and possible reactions, they will know that a teen may be feeling these things and can give the right type of support
In summary, (read slide) Parents can learn to Offer me a sense of control by allowing me to choose special foods at the grocery store, select the clothes I want to wear, decorate my room the way I want.
Kids are resilient Families are resilient… when they understand each other, are prepared and communicate.
Brett Survey info
Specifics of program
You see this every day Hear it Pictures Every page – who is the audience Think of one of your patient’s with a toddler, now a school age child, now a teenager. Send to Conor and he will link to the site.
Grant Kate's Wish - Presentation
Communicating with Kids when
a Parent has Cancer
Grant Kate’s Wish
Grant Kate’s Wish
• Provides funding for the delivery of front
line, time of diagnosis, face to face
educational services for parents who
have received a cancer diagnosis, free
Why You are Here
• A trusted advisor understands the
connection between emotional and
• Recognize and refer families in need
What a Family May
• Children’s issues
• Teens’ issues
• Family concerns
Kids Deserve the Truth
• Use the word “cancer”
• Keep it simple and age appropriate
• Tell them what to expect
with Big Questions
• Did I cause this to happen?
• Will I catch it?
• What is going to happen to me now?
Did I cause this to happen?
• Children have magical thinking.
• They can control the world
• Believing they caused it, means they
can fix it.
Will I catch it?
• Can I still hug and kiss you?
• Will the other parent get it too?
What is going to happen to
• Who will take care of me?
• Who can I trust?
• Why won’t you be home with me?
• Is it contagious?
• Who will take me to soccer practice?
• Will you die?
Is it contagious?
• Experience is with colds and strep throat
• Simple, concrete explanations
Who will take care of me
• Rules and routines are important
• Outside schedules are part of their
Will you die?
• Understand that death can be permanent
• Are really asking about their own security
• Need a short term answer focusing on the
• Give me more details
• What does this mean to my life?
• Can I still be a with my friends?
Give me more details
• Understand the facts and uncertainties
• Think with emotions
• Have access to the internet
What does this mean to my
• Am I allowed to have fun?
• How can I help?
• Want to be normal – a parent with
cancer makes them different
“Will you tell me?”
• I probably won’t ask you.
• I don’t want to make you feel sad.
• I don’t want to be sad either.
• I can’t absorb too much at once.
• Check in with me from time to time.
All children need to know..
• Parents and doctors are capable of
making the decisions.
• Adults are in charge and are doing
everything possible to make life better
• They can’t control this. They can still
control other things in their life.
All children want to know
what will stay the same…
• “I can still read with you before bed, but
we will all cuddle together in the big
bed, not in your bed.”
• “You and daddy can still play games
together, but not soccer or basketball,
we can find some indoor games.”
Kids are resilient
When they know they are loved, cared
for and listened to…..
Grant Kate’s Wish
• Virginia Piper Cancer Institute
• Parenting Educators
Kate’s Wish Foundation www.grantkateswish.org
Intentional Parenting Center: 952-767-5009
Pact Program, Massachusetts General Hospital, “A
Dozen Lessons Learned” www.mghpact.org/parents
Virginia Piper Cancer Institute
Raising an Emotionally Healthy Child When a Parent is
Sick, by Paula Rauch and Anna Muriel, a Harvard
Someone I Love is Sick, Kathleen McCue
When a Parent has Cancer, A guide for caring for your
children, Wendy Schlessel Harpham, MD
Caring Bridge.org: an online space to connect, share
news and receive support.