Part A: Section A.2
Understanding Grief and Loss in Children
Part A: Understanding Grief and Loss in Children and Their Families
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Objectives
1.1 Describe the overarching process of grief and loss,
including:
a. ranges of grief reactions: denial, anger, bargaining, depression,
acceptance
b. difference between “normal” and “complicated” grief
1.2. Explain how the child’s concept of death develops
from toddlerhood through adolescence
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Objectives (continued)
1.3. Demonstrate knowledge of the stages of acquisition of
information that occur in children with life threatening
illnesses, including:
a. What children understand and know as their disease
progresses.
b. How to assist children’s understanding in discussions of
medical information.
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Term Definitions
o Grief: a normal process in response to loss
o Bereavement: the state of having suffered a loss
o Mourning: the public expression of grief
o Complicated grief: persistent separation distress lasting
more than 6 months and interfering with daily functioning
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Components of Grief
o Denial: “This isn’t happening.”
o Anger: “It’s not fair!”
o Bargaining: “If I just behave better, things will be
different.”
o Depression: “Everything sucks, what’s the point?”
o Acceptance: “I miss Shaggy, but things will be okay.”
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Activity: Loss Exercise
Each participant takes 5 pieces of paper and writes down
something of personal value on each piece. (Can be a
person, pet, object, skill, opportunity, etc.) Then each
participant finds a partner. They then each take three pieces
of paper away from their partner.
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Expressions of Childhood Grief
o Sadness
o Explosive emotions
o Guilt
o Regression
o Fear
o Acting out behavior
o Numbness
o Withdrawal
o "Big Man” or "Big
Woman" Syndrome
o Disbelief
o Physical symptom
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Grief in Children
o How a child experiences grief will depend on their
developmental stage and personality
o Context of the relationship is also a key element
o Other important elements are
o Nature of the death
o Prior experiences with death or loss
o Availability of family/social support
o Behavior, attitudes and responsiveness of parents and other
support individuals in their environment
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Pediatric Bereavement
o Children have several “tasks” to accomplish during
bereavement:
o Accepting the loss
o Experiencing the pain and other emotions associated with loss
o Adjusting to a new situation/environment
o Finding ways to memorialize/remember the individual
who is gone
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Complicated Grief
o Invasive and debilitating grief symptoms lasting more
than 6-12 months
o Can include:
o Yearning for deceased
o Difficulty accepting death
o Inability to trust
o Excessive anger
o Intense loneliness
o Frequent pre-occupying thoughts about deceased
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Complicated Grief Risk Factors
o Deep attachment to deceased person
o Child, spouse, parent, sibling
o Unexpected death
o Traumatic death
o Prior experience with traumatic loss
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Reflection
PBS “It’s my life” on “Dealing with Death” (6:39)
http://www.youtube.com/watch?v=WHUewQtLgNs&feature=r
elated
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Reflection
o What grief responses do the children identify in the video?
o What additional losses to the children identify?
o What coping mechanisms do the children identify?
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Changing Face of Death
Before
1900s
20th
Century
2000s
• Intergenerational family units
• Limited effective medical interventions
• Common to experience births and deaths in the home
• Hospitals and medical technology advance
• Resuscitation (CPR) developed in 1960
• Emphasis on youth and health
• Death as a medical failure
• Death occurring in medical facilities > home
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Adult Understanding of Death
o Irreversibility
o Death is permanent.
o Nonfunctionality
o All life-defining functions cease at the time of death.
o Universality
o All living things die, including self.
o Causality
o There are physical reasons someone dies.
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Understanding of Death
Age
Developmental Perception or
Stage (Piaget) Concern
Anticipated Response
< 2 years
Sensorimotor
Sense separation
and the emotions
of others
Withdrawal
Irritability
2 – 6 years
Preoperational
Dead = “Not Alive”
Death as
Temporary
Wonder about what the
dead “do”
Magical thinking (I am
the cause)
6 – 10 years
Concrete
operational
Morbid interest in
death
Others die  I die
Exaggerated behavioral
reactions to the idea of
death and dead things
Adolescence
Formal
operational
Adult concepts
Existential
implications
“But not me”
Death as an adversary
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Reflection
PBS “Sesame Street” Big Bird learns about death
(Mr. Hooper dies) (4:33)
http://www.youtube.com/watch?v=9NjFbz6vGU8&feature=rel
ated
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Reflection
o Where is Big Bird in his developmental understanding
of death?
o How do the adults help support his understanding?
o How could you use this with parents or patients?
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Reflection
GENERATIONS; The Final Farewell, in a Child’s Eyes, in
New York Times October 29, 2006
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Reflection
o What are your personal experiences with talking about
death?
o What are your personal experiences being told about a
death?
o What are your fears around talking about death with
children?
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Activity
Role play explaining the death of a grandparent to a child
aged 3, 8, and 14 years old.
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Understanding of Death –
Impact of Experience
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Stages in a Sick Child’s Acquisition of
Information about His/Her Illness
Stage 1
o Child’s Information
o “It” is a serious illness
o Not all children will know the name of the disease
o Experience Required for Passage to This Stage
o Parents informed of the diagnosis
o Child’s Self-Concept at This Stage
o I was previously well but now I am seriously ill
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Stages in a Sick Child’s Acquisition of
Information about His/Her Illness
Stage 2
o Child’s Information
o The names of the drugs used in treatment, how they are given and
their side effects
o Experience Required for Passage to This Stage
o Parents informed the child is in remission
o Child is speaking to other children at clinic
o Child’s Self-Concept at This Stage
o I am seriously ill but I will get better
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Stages in a Sick Child’s Acquisition of
Information about His/Her Illness
Stage 3
o Child’s Information
o Purposes of procedures and treatments; relationship between
procedures and specific symptoms
o Experience Required for Passage to This Stage
o First relapse
o Child’s Self-Concept at This Stage
o I am always ill and I might not get better
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Stages in a Sick Child’s Acquisition of
Information about His/Her Illness
Stage 4
o Child’s Information
o Larger perspective of the disease as an endless series of
remissions and relapses
o Experience Required for Passage to This Stage
o Several remissions and relapses
o Child’s Self-Concept at This Stage
o I am always ill and will never get better
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Stages in a Sick Child’s Acquisition of
Information about His/Her Illness
Stage 5
o Child’s Information
o The disease is a series of remissions and relapses ending in death
o Experience Required for Passage to This Stage
o Child learns of the death of an ill peer
o Child’s Self-Concept at This Stage
o I am dying
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Reflection
Watch one of the videos of a child describing their life with a
life-limiting disease
o “My So-Called Lungs" from Hearing Voices: Radio Diaries
(21:13) http://www.radiodiaries.org/my-so-called-lungs
o "Living with Muscular Dystrophy" by Bryan Arnold (5:36)
https://www.youtube.com/watch?v=ZrPnmgs4rHM
o "My philosophy for a happy life" by Sam Burns (12:45)
https://www.youtube.com/watch?v=36m1o-tM05g
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Reflection
Write a reflective essay or discuss with your group how
you perceive quality of life for a patient you have cared
for with a chronic or terminal illness.
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Strategies to Assist the Child’s
Understanding of His/Her Illness
o Discover what the child understands about the illness
before beginning the conversation.
o Look beyond age and verbal presentations for an
indication of the child’s conception of illness and death.
o Answer what the child wants to know.
o Children want to know different things at different stages in their
illness.
Bluebond-Langer M. A Child’s View of Death. Current Pediatrics. 1994; 4: 253-57.
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Strategies to Help the Child
Understand His/Her Illness
o Use terminology the child understands.
o Draw pictures
o Use diagrams
o Check the child’s understanding by asking the child to explain what
you have said with statements like “Now if you were the doctor how
would you explain this?”
o Once is not enough
o Don’t assume the child understands after one conversation.
o Be honest
o Do not tell a child anything you do not believe.
Bluebond-Langer M. A Child’s View of Death. Current Pediatrics. 1994; 4: 253-57.
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Strategies to Assist the Child’s
Understanding of His/Her Illness
o Don’t necessarily try to correct a child’s distorted ideas
and magical feeling about his/her illness.
o These thoughts may serve a purpose in coping.
o It is unwise to break down such defenses unless you are sure
more desirable concepts will take their place.
o Try to understand the family’s emotional coping style.
o Family interaction and coping strategies have a large effect on a
child’s adjustment to illness.
Brewster, AB. “Chronically Ill Hospitalized Children’s Concepts of Their Illness.” Pediatrics.
1982; 69: 355-62.
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Talking to Ill Children About
Goals of Care
o What are you looking forward to most of all?
o Is there anything that is worrying you or making you feel
afraid?
o Is there anything about how you are feeling that is
making you feel worried or afraid?
Hurwitz CA, Duncan J, Wolfe J. Caring for the Child with Cancer at the Close of Life. JAMA.
2004; 292:2141-2149
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