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Little Tears, Big Fears Working With Children Experiencing
Anticipatory Grief
C. Caryn Kondo, MSW
Clinical Director New Song Center
Jenni Rogers, MS, CCLS
Child Life Supervisor HonorHealth
How do you feel?
Understanding Anticipatory Grief
The complex interaction between feelings,
thoughts, and physical reactions to
learning and living when someone we love
is dying.
Factors that Influence Grief
Culture and Spirituality
Nature of Illness and Death
Past Experiences and Losses
Relationship to Person
Personality
Developmental Stage
Parental Attitudes and Communication
Child
Child
Child
Complex Involvement
Patient
Support
Extended
Family
Caregiver Medical
Team
Important Parenting Considerations
The overwhelming need for parents to
continue to be active and purposeful to
their family.
› Piloting: Navigating through the challenges
› Providing: Giving in order to meet family needs
› Protecting: keeping the family safe
› Preserving: Maintaining roles and functioning
*Price, et al. International Journal of Nursing Studies (48), 2011
Children and Anticipatory Grief
The journey from diagnosis to dying is often
filled with complex emotions and stressful
challenges for all family members.
There is no clear or consistent road map for this
challenging journey.
Understanding the connection between
the challenges and needs for children
is important.
Children especially have many needs in helping
them navigate.
Importance of Assessment
“How are the kids doing?” vs
“There have been a lot of changes happening lately, do you mind sharing with
me what that has been like for your kids?” “If the kids were here, what would they say
has been going on? How would they
describe (the situation)?”
A Word About Temperament
“Type A” “rule followers” “high achievement standards for themselves
and others” “don’t really show emotions too much” “really holding us all together”
“The more emotional one” “we know when they are mad, sad, happy” “easy going” “haven’t been home very much”
Complex Challenges
Exploring the complex challenges families
face provides a more complete picture and
approach to understanding and working
with children when family member is
dying.
Complex Challenges Dealing with Changes
Experiencing High Emotional Stress
Maintaining Family Roles /Responsibilities
Finding Support
Managing Multiple Compounding Losses
Moving On…..Letting Go
Challenges and Needs
In order to face these challenges in a way
that allows for healthy growth and coping;
children have to have their primary needs
met.
Primary Needs for Children
To Experience Security and Safety
To be Told the Truth
To Express Themselves
To be an active family member
Remain a Child
Developmental Considerations
Infants to Toddlers (0-4)
Young School-age (5-8)
Older School-age (9-12)
Teens (13-18)
Young Adults (18-21)
Phases of Anticipatory Grief
1. Illness and Diagnosis Explaining illness and disease to children.
• “We just found out that Mom has a big sickness that she may not get better like other little illnesses. It is called____________.”
2. Treatment Phase When Working hard to get healthy isn’t
working. • “The medicine Mom was taking is not working to
stop the illness. The sickness is making her body very weak. We going to make sure she is in no pain.”
Phases of Anticipatory Grief
3. Terminal Phase
Explaining Death to Children in age
appropriate ways.
• “Mom is having a very hard time. Her body is going to stop working. She may not respond to
you, but keep talking she knows you are here.”
4. Dying
Including and preparing children for the
process very important.
• “It looks like we do not have much time; what would you like to do to say good bye to mom?”
Answering Difficult Questions
Is it ok for me to cry in
front of my child?
Are there
words/phrases I
should avoid?
How much should I
tell my child?
How do I prepare
them for the hospital
visit?
What if my child asks
if I am going to die?
How do I answer if
they ask why this is
happening?
How involved or
notification do they
want?
Step By Step Disclosure
1. What does child know?
2. Do they understand basic human body?
3. How is the disease impacting body?
4. How did treatment & medications impact
the body?
5. What is happening now?
The elephant in the room…
Are they going to die?
Creating Conversations
What have been common barriers to
creating conversations between parents
and children?
Encouraging Coping
Tap into past positive coping style
Understanding the silent treatment
Be Creative
Keep asking questions and checking in
Give them positive and helpful “jobs” Help parents to choose their battles and
be a safe place
Allowing for Creative Expression
Ways to help Children Express their Emotions Safely:
• Use play, art, music and movement.
• Make an anger pillow to work out frustrations.
• Use clay to work through emotions.
• Bang pool noodle on ground.
• Create an art journal.
• Keep active children active.
• Give children choices when they are available.
• Make time for normal activities.
What Adults Can Do:
Be a Good Listener: Children need love, support and guidance. Being
Listened to is healing.
Be Reassuring: Acceptance and reassurance helps children feel safe
and secure.
Be Honest: Honest and open communication leads to greater trust
and healing.
Be Flexible: Allow for some rule breaks.
What Adults Can Do:
Be Patient: Working through anticipatory grief challenges takes
time.
Be Aware: Find time to focus on the child. Watch their behavior
and monitor any changes or red flags.
Be Open: Allow for the expression of their feelings in as many
different ways as possible. Give them choices. Seek
out assistance when you need it.
Encouraging Legacy
Photograph
› Day to Day life
› Activities
Voice Recordings
Tangible items (lovey)
Cooking together/recipes
Use caution with cards and letters
Top Ten Guidelines for Helpers
10. Always remember to take care of yourself.
9. Know your comfort level.
8. Bring age appropriate toys, games, supplies.
7. Remember that children are not small adults.
6. Put yourself at child’s level. 5. Accept and respect child’s emotional state. 4. Talk to the child, not at or about them.
3. Be able to play.
2. Take your cues from the child.
1. Always be honest and real.
Toolbox of Toys
Create your own tool box of child friendly
supplies and activities.
› Basic human body book
› Model Magic
› Markers/Crayons/Coloring Sheets
› Scavenger Hunt with Bugs
› Crocodile Dentist
› Uno
Book Resources
Adults: › How to Help Children through a Parent’s Serious Illness by
Kathleen McCue
› Preparing the Children: Information and ideas for Families
Facing Terminal Illness by Kathy Nussbaum
› A Tiny Boat at Sea by Izetta Smith
Children: › Lifetimes: The beautiful way to explain death to children by
Bryan Mellonie
› Waterbugs and Dragonflies:Explaining Death to Young Children
by Doris Stickney
› When Death Walks In by Mark Scrivani (teens)
How do you feel now?