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. Part A: Understanding Grief and Loss in Children and Their Families
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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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