Talking to children and teens about cancer and death Abby Ziegler MS CCLS The Facts Each year in the US there are an estimated15780 children between birth and 19 who are diagnosed with cancer ID: 549329
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Tackling Tough Topics:Talking to children and teens about cancer and death
Abby Ziegler, MS, CCLSSlide2
The Facts
Each year in the US there are an estimated15,780 children between birth and 19 who are diagnosed with cancer
1 in 285 children
Globally, there are more than 300,000 children diagnosed with cancer each yearEvery 3 minutesDecrease in mortality rates among pediatric diagnoses Children are living longer with life-threatening illnesses53,000 children die annually in the United States, half from extended chronic illness, half from acute death Slide3
Why tell children about cancer?
They are smart
They are observant
They are resilientYou pay attention even if you think they aren’t They pick up on feelingsThey may draw conclusions and create misconceptions They will try to find ways to cope on their ownSlide4
“Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.”
-Fred RogersSlide5
Prepare yourself
Remember what is asked of you on airplanes in the event of an emergency…”Place oxygen mask on yourself before assisting your child”
Choose to use the crisis positively
Draw on strength of othersRecognize own limitations and insecuritiesEducate yourselfSupport each otherKnow when to ask for more helpSlide6
Talking about cancer
Key points
Starting the conversation
Appropriate use of languageSlide7
3 big points for kids of all ages
Nothing the child did caused the cancer
The child will be taken care of no matter the outcome
The child cannot “catch” the illnessSlide8
Where to start…
Chose the right time and place
Safe and comfortable
Get down on their levelGet an idea of what they already know by using open ended questions “why do you think mom has been feeling sick?”“What will happen when someone has chemotherapy?”Use the power of play!Inform familiesSlide9
Think about your words…Slide10
Appropriate use of language
Use words that children understand
Avoid words that can have dual meaning
If they cannot be avoided, explain the different meaningsInclude religious faith/beliefs if appropriate to the familyUse concrete wordsUse the word CANCER or name of the diseaseYounger children have not developed negative associations with the word
Ask them what they think it means (open ended questions will facilitate conversation and assist in clearing up misconceptions)Slide11
In the mind of a child…
Potentially Confusing
ICU
IVSpecial/Funny“The doctor will put Mommy to sleep”“We lost your uncle today”“Daddy needs a CAT scan.” Bone Marrow
What a child may hear:
“I see you”
“Ivy”
“That doesn’t look special to me.”
“My cat went to sleep and never came back.”
“Let’s go find him!”
“what are the cats going to do to him?”
“Bow and arrow”Slide12
Common concerns (all ages)
What’s changed?
What have you heard?
What’s wrong?How will it affect them?Will they die?Can they “catch” it?Did they cause it?Who will take care of me?Can they still…/Can I still…Kid to Kid: My Parent Has CancerSlide13
Developmental Understanding of Illness: Infant/Toddler (0-2)
Reactions
No real concept of illness or grief
Older toddlers may be able to understand simple terminology“boo-boo,” “ouchie,” “poke,” “tubie for medicine,” etc.
Separation anxiety
Disruptions of daily routines
Sleep disruptions (refusal of naps)
Poor eating
Irritability, excessive crying
Increased need for comfort-
Interventions
Extra comfort measures
Rocking, cuddling,
etc
Decreased stimuli
Quiet voices, limited people
Limit caregivers
Consistency in routine
Opportunity to meet developmental milestonesSlide14
Developmental Understanding of Illness: Preschooler (3-5)
Reactions
Ego-centric
Magical thinkingIllness=punishmentDifficulty differentiating their own healthRegression-thumb sucking, baby talkFears-monsters, dark, separationHyperactivity, aggressionChange in eating habits
Interventions
Routine
Simple language
Play!
Preparation (books, pictures, dolls)
Stop for questions
Repeat information
Address 3 big pointsSlide15
Developmental Understanding of Illness: School age (6-12)
Reactions
Ability to understand more about illness
ScientistsBegin to make associations with others’ who have had same illnessSad, crying, irritabilityGuilt, jealousyFear, anxiety, physical complaintsSeparation anxiety
Aggression, anger, isolation
Interventions
Honesty and updates
Active listening
Routine, create a calendar
Education, 3 big points
Trusted adult, “code word”
Illness is not a punishment
Encourage sharing feelings
Address worries about other lossesSlide16
Developmental Understanding of Illness: Adolescence (12-17)
Reactions
Abstract thinking/philosophers
Adult understanding of illness“Dr. Google.”Rebellion, angerDepression, anxiety, withdrawalWorking toward independenceApathy
Physical symptoms
Increased sense of responsibility
Interventions
Open, honest communication
Details
Rules, expectations, and limits
Routine
Compliments
Peer support
The big 3 points
Outlet for feelings
Time and privacy
Permission to still have funSlide17
“Childhood is the kingdom where nobody dies.”
-
Edna St. Vincent Millay, 1937Slide18
Talking to children about death
Use words that children understand
Avoid words that have dual meanings
“passed away,” “gone to sleep,” “taken to a better place”Include religious/faith beliefsConcrete wordsDead, death, died, heartHeart stopped beatingBody stopped workingSlide19
Considering Language…
Potentially confusing
Special place
Better placeLostBurialCremationI’m sorryGoing on a long trip
What a child may hear
“Doesn’t look/feel special.”
“The___ is a better place, let’s go!”
“Let’s go find them”
“how will they breathe?”
Fire= Hurt
“What did you do wrong?”
“When are they
coming back?”Slide20
Special Considerations
Developmental vs Chronological age
Family’s style of coping
Reactions vary depending on how information is communicatedGrief can begin before a deathAnticipatory griefLoss of healthLoss of what once wasLoss of what will never be experiencedSlide21
Common Reactions (all ages)
Denial
Anger
BargainingDepressionAcceptanceShockFearGuiltRegressionPhysical SymptomsSlide22
Factors influencing grief reactions
Child’s relationship to the deceased
Coping abilities for change
Child’s temperament Child/family’s history of loss and deathHow individual diedIf the child was witness to deathCultural/religious influencesAvailability of adult caregivers“Grief is a universal, healthy, action to loss.”Slide23
Impact on larger family system
Identity crisis
Family routine
Legacy of deceased child (individual)FamilyCommunitySocial mediaSlide24
When More Help is Needed
Seek additional help if there are problems in more than one of these areas for more than a few weeks:
Family
SchoolPeersTrouble getting back into routine after several weeksOther serious concernsWhen adults are overwhelmedMore significant problems (when immediate help may be needed):Suicidal ideations
Complete denial
Delinquency
Self harm or harm to othersSlide25
Getting Help
Teacher or school counselor
Pediatrician or healthcare provider
Bereavement support groups for families and childrenCaring place, Lending Hearts, Compassionate FriendsCommunity-based mental health servicesSpecial camps for children who have had a family member dieCamp Clubhouse, Camp Erin, Camp KesemHospice programsSlide26
Resources at Our Clubhouse: Family and Youth
Art and Expression Activities
Social Events
CLIMBCampIndividual support sessions/medical teachingPediatric Cancer Support GroupPediatric Bereavement GroupSlide27
References
Cancer in the Family: Helping Children Cope With A Parent’s Illness
. Atlanta, GA: American Cancer Society 2001.
Gaynard
, L.,
Wolfer
, J, Goldberger, J, Thompson, R., Redburn, L., &
Laidley
, L. (1990). Psychosocial Care of Children in Hospitals: A Clinical Practice Manual From the Association for the Care of Children’s Health Child Life Research Project.
Harpham, Wendy
Schlessel
(2004).
When a Parent Has Cancer: A Guide to Caring for Your Children.
Work Group on Palliative Care for Children of the International Group on Death, Dying, and Bereavement (1999). Children, Adolescents, and Death: Myths, Realities and Challenges. Death Studies 23: 443-463.
McCue, Kathleen (1994).
How to Help Children Through a Parent’s Serious Illness
.
St Jude Children’s Research Hospital (2005).
Do you know…An educational series for patients and their families
[Electronic resource]. Retrieved December 2010 from
www.stjude.org
Silver, M & Silver (2014).
My Parent Has Cancer and It Really Sucks.
www.someoneiloveissick.com
(Helping Very Young Children Cope with Cancer in the Family)
www.mghpact.org
(Massachusetts General Hospital- Parenting At a Challenging Time)
www.childlife.org
(Child Life Council)
The
Dougy
Center: The National Canter for Grieving Children and Families
www.dougy.orgSlide28
THANK YOU!
For more questions, contact Abby Ziegler, MS, CCLS
aziegler@ourclubhouse.org