Hope Lives Here The Children’s Hospital of Philadelphia Cancer’s Effect on Families Melissa A....
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Transcript of Hope Lives Here The Children’s Hospital of Philadelphia Cancer’s Effect on Families Melissa A....
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Cancer’s Effect on Families
Melissa A. Alderfer, PhDNemours Children’s Health System &
Stanley Kimmel Medical College at Thomas Jefferson University
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Discuss conceptualizations of possible reactions of the family to childhood cancer
Review the course of childhood cancer and the experience
Talk about evolution in our understanding
Provide recommendations to foster adjustment
Goals and Overview
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Families and Childhood Illness
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Families & Illness
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Depression – sad, empty or irritable mood with physical and cognitive changes reducing ability to function
Anxiety – excessive and persistent fear or worry about a variety of events and situations
Individual Reactions
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Depression
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Anxiety
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Posttraumatic Stress – intrusive thoughts, avoidance, negative alterations in cognitions/mood and physiological arousal in response to exposure to actual or threatened death, serious injury or violence
Individual Reactions
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Posttraumatic Stress
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Posttraumatic Stress
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Posttraumatic Stress
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Family Reactions
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The Experience of Childhood Cancer
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Complicated and unsettling process
Parents are typically the first to notice that something is wrong, but may not expect cancer
Once cancer is suspected, the family may be referred to a large unfamiliar children’s hospital
The child may need extensive, invasive diagnostic tests
Diagnosis
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Beginning treatment:
Invasive, painful, and makes the child sick
Complex regimens, frequent or extended hospitalizations
Side effects, complications
Treatment becomes the center of family life
Treatment Initiation
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Range of expected strong emotions across family members:
Shock, disbelief, denial
Confusion, frustration
Fear, worry, helplessness
Sadness, mourning, grief
Guilt, anger
Diagnosis & Treatment Initiation
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The reactions of the child with cancer to diagnosis vary depending upon his or her age
Some symptoms of anxiety, fear, and sadness are common
Near diagnosis,10% fall into clinical range for PTS
Overall, children with cancer cope well
Child with Cancer
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Within 2 weeks of diagnosis, 85% of parents report significant distress
Anxiety, poorer quality of life, and symptoms of depression are common
Within 1 month of diagnosis, 51% of mothers and 40% of fathers qualify for a diagnosis of Acute Stress Disorder
75-83% report intrusion; 70-83% report avoidance; 83% report arousal
Parents
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Siblings report loneliness, marginalization, jealousy and worry
Within 1 month of diagnosis, 57% of siblings report poor emotional quality of life
Nearly 40% of siblings report difficulties with memory, concentration and learning near diagnosis
Siblings
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Marital distress is reported within 40% of families
Parenting stress is common: over-protection, impatience, relaxed rules and inconsistency in discipline is reported by 32% of fathers and 48% of mothers
Families report pulling closer together: 60% of families report increased cohesion
Family
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Remission and illness stabilization occurs for most children
Treatment becomes more predictable, but with times of transition and uncertainty
Side effects, complications and possibility of recurrence/relapse remain stressful
Illness Stabilization
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During treatment children with cancer continue to show little or no evidence of emotional or behavioral problems
Some reports suggest LOWER levels of depression and anxiety than healthy children
Child with Cancer
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Two-thirds of parents report that dealing with their own intense emotions is the greatest challenge
Feelings of helplessness, powerlessness, and lack of control are common
Anxiety and depression symptoms decrease within the first three months after diagnosis, but remain significantly elevated
Parents
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Within a few months of diagnosis, 44% of parents qualify for a diagnosis of PTSD
At 6 months post-diagnosis, 40-50% of parents continue to report increased distress
About one year out, 68% of Moms and 57% of Dads scored in the moderate to severe range for PTS
By 24 months post-diagnosis, distress levels are near normative levels for most
Parents
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Separation from parents and poor communication fuels confusion and anxiety
Increases in behavioral and emotional problems, decrements in quality of life, declines in school performance
25% qualify for a diagnosis of PTSD; Up to 60% in moderate to severe range for PTS
Siblings
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Significant marital distress is reported by 25 to 30% of parents in the year post-diagnosis
Parenting stress increases once the child reaches remission
Overprotection and conflicts between parents and children are typical
Role overload is common
Family
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May be months or years after diagnosis
Loss of the support of the medical team; end of actively fighting cancer
Expectation to return to normal
Emotionally ambivalent time: relief and joy accompanied by fear and uncertainty
End of Treatment
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For most survivors, no evidence of depression or anxiety
8% report lifetime PTSD; 5% current PTSD; 13-18% in clinical range for PTS
Reports of a more positive view of life, good self-esteem, broader perspective
Adolescent Survivors
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Transition to young adulthood may be more difficult
Young Adult survivors may report more PTS symptoms than adolescent survivors or controls
Young Adult Survivors
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Distress and anxiety spike at end of treatment, then improve
PTS off treatment:
14 to 20% of mothers with current PTSD; 44% in moderate to severe range for PTS
10% of fathers with current PTSD; 33-35% in moderate to severe range for PTS
Parents
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No evidence of increased anxiety and depression long-term for siblings, but very little research
About one-third report moderate to severe PTS, significantly greater than controls
Siblings
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Family patterns forged during treatment may persist
Family members may adjust at different speeds and in different ways
Disappointment may arise if there are expectations that things will return to “normal”
Family
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Evolution of the Traumatic Stress Model
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Little evidence of anxiety, depression and PTS symptoms in children with cancer
PTS rates similar to natural disasters
no different from general population
Strong evidence of distress, PTS in parents
PTS rates similar to experiencing violent crime
biological evidence is starting to accrue
Growing evidence of distress, PTS in siblings
Summary of Research
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Rarely Anxiety, Depressive Disorders
Sometimes cancer-related PTSD, but
some classic symptoms are rarely reported in families of children with cancer
some PTSD symptoms are qualitatively different; some are constrained by the situation
Symptoms may occur without impairment in functioning
Qualitative Differences
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Pediatric Medical Traumatic Stress:
a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures and invasive or frightening treatment experiences
response are more strongly related to subjective experience of the event as opposed to objective severity
responses include symptoms of re-experiencing, avoidance , arousal and changes in mood that may be adaptive or may become disruptive to functioning; most are resilient
Evolution: Medical Trauma
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Trauma symptoms as normative and adaptive
distress communicates a need for support
re-experiencing allows cognitive processing of the event
avoidance may reduce distress and allow functioning
arousal keeps you primed to recognize and deal with additional traumatic events
Evolution: Trauma Model
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Potential positive outcomes: resilience, growth
resilience: “the ability to maintain relatively stable, healthy levels of psychological and physical functioning, as well as the capacity for generative experiences and positive emotions (when exposed to a potentially traumatic event)” (Bonanno & Mancini, 2008)
PTG: “the cognitive process by which those who have experienced trauma apply positive interpretations and find meaning in the event” (Barakat, Alderfer & Kazak, 2006)
Evolution: Trauma Models
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More positive view of life; good self-esteem; broader perspective
Enhanced maturity; greater compassion and empathy; new values and priorities; new strengths; deeper appreciation of life
53% indicated a positive change in the way they think about their life; 42% indicated a positive change in their plans for the future
Adolescent Survivors
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Parents:
86% of mothers and 62% of fathers indicated a positive change in the way they think about their life
58% of mothers and 48% of fathers indicated a positive change in how they treat others
Siblings:
enhanced maturity, responsibility, independence and personal growth
more empathy, thoughtfulness and compassion
Family Members
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Helping your Family Cope
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Be patient…
with yourself, your family, and treatment. It takes time:
to learn about cancer, treatment and the medical system
to adjust emotionally
to understand the reactions of family members
to find the best way for your family to work together and support each other
to accept the uncertainty
With time it gets better
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Help your children…
understand what is happening. Talk to them; be age-appropriate (young children don’t need detail; explain physical changes, treatment course, changes in routine)
be reassuring and supportive (this is not punishment; it is not contagious; you will not be abandoned; your needs will be met)
be sensitive to their preferences and style (not your own)
be honest (help them prepare; build trust)
be open to their questions (you don’t have to have all the answers)
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Share your feelings…
with family and friends. It is important to:
recognize how your thoughts and feelings impact your behavior with others
talk about how you feel
share your feelings with, encourage your children to express their feelings
understand positive emotions are OK
accept the feelings of others
Emotional connections help
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to help you and your family. Ask or allow
the medical team to help educate and prepare you and your children for what is to come
extended family to help maintain your home, spend time with healthy siblings, become involved in medical care
friends, neighbors, community members to provide support to your family
the school to help your children
Don’t try to go it alone
Rely on others…
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Establish routines…
and maintain rules. Consistency helps: offset the unpredictability of cancer
allow children to feel more safe and secure
ward off behavioral problems in the future
give everyone something to expect
Create your “new normal”
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Take care…of yourself. To be at your best:
take time for yourself
do enjoyable things with family and friends
maintain your own physical health
accept what you can’t control; focus on what you can control
look for realistically positive aspects of your experience
Replenish yourself
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Ask for help…
from a psychosocial provider when: emotional reactions are interfering with cancer treatment or appropriate follow-up care
someone has problems with day to day functioning that aren’t improving with time
differences in coping style are causing relationship problems
you have concerns and need advice
Get help when needed
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Conclusions
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Distress is greatest at diagnosis and improves over time reaching near normal levels by 2 years post-diagnosis
Parents report the most distress within the family, followed by siblings
The child with cancer seems to function quite well throughout the cancer experience
Evidence of symptoms of traumatic stress and traumatic growth across family members
Summary
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Diagnostic criteria should not constrain our conceptualization of the cancer experience
Must refrain from placing value judgments on individual differences in response to childhood cancer
Continue to listen to the stories/experiences of families to expand our understanding
Conclusions
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Conclusions
To maximize adjustment:
- be patient, it takes time
- talk with your children
- share your feelings
- rely on others
- create your “new normal”
- take care of yourself
- ask for help when needed
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Thank you for your attention!
Melissa A. Alderfer, PhDNemours Children’s Health System &
Stanley Kimmel Medical College at Thomas Jefferson University