Melissa A. Alderfer, PhD
Nemours Children’s Health System &
Stanley Kimmel Medical College at Thomas Jefferson University
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Cancer’s Effect on
Families
 Review the course of childhood cancer and
the experience
 Talk about evolution in our understanding
 Provide recommendations to foster
adjustment
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 Discuss conceptualizations of possible
reactions of the family to childhood cancer
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Goals and Overview
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Families and
Childhood
Illness
 The functioning of the family influences two
outcomes:
 management of the illness
 wellbeing of its members
 The family is greatly impacted by illness:
 individual
 relationships
 functioning as a unit
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 The family provides the context in which
childhood illness is managed
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Families & Illness
 Anxiety – excessive and persistent fear or worry
about a variety of events and situations
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 Depression – sad, empty or irritable mood with
physical and cognitive changes reducing ability to
function
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Individual Reactions
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depressed mood
diminished interest or pleasure in activities
significant weight loss or gain
inability to sleep or inability to stay awake
restlessness or slowing of movements
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fatigue, loss of energy
feelings of worthlessness, excessive guilt
diminished ability to think or concentrate
recurrent thoughts of death or suicide
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Depression symptoms:
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Depression
 excessive fear and worry manifest by:
 feeling wound-up, tense or restless
 being easily fatigued or worn-out
 having concentration problems
 irritability
 significant tension in muscles
 difficulty with sleep
 difficulty controlling the fear and worry
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Anxiety symptoms:
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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
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Individual Reactions
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recurrent, involuntary, intrusive memories
recurrent distressing dreams
acting or feeling as if the event is recurring
intense distress in response to reminders of the event
physiological reactivity to reminders
 Persistent avoidance
 efforts to avoid thoughts, feelings, memories
 efforts to avoid reminders of the event
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 Intrusion, re-experiencing symptoms:
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Posttraumatic Stress
 exaggerated negative beliefs or expectations
 persistent, distorted cognitions leading to personal
blame or blaming others
 negative emotions (e.g., fear, horror, anger, guilt)
 inability to experience positive emotions
 inability to recall an important aspect
 diminished interest or participation in activities
 feeling detachment or estrangement
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 Negative alterations in cognitions and mood:
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Posttraumatic Stress
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difficulty falling or staying asleep
irritability or outbursts of anger
reckless or self-destructive behavior
difficulty concentrating
hypervigilance
exaggerated startle response
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 Increased arousal and reactivity:
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Posttraumatic Stress
 New roles, responsibilities and schedules
 New rules and patterns of interaction
 Changes to the affective environment:
 Changes in closeness or cohesion among members
 Changes in the emotional tone
 Changes in emotional availability and responsiveness
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 Structural changes:
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Family Reactions
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The
Experience
of Childhood
Cancer
 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
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 Complicated and unsettling process
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Diagnosis
 Invasive, painful, and makes the child sick
 Complex regimens, frequent or extended
hospitalizations
 Side effects, complications
 Treatment becomes the center of family life
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 Beginning treatment:
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Treatment Initiation
 Shock, disbelief, denial
 Confusion, frustration
 Fear, worry, helplessness
 Sadness, mourning, grief
 Guilt, anger
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Range of expected strong emotions across
family members:
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Diagnosis & Treatment
Initiation
 Some symptoms of anxiety, fear, and
sadness are common
 Near diagnosis,10% fall into clinical range
for PTS
 Overall, children with cancer cope well
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 The reactions of the child with cancer to
diagnosis vary depending upon his or her age
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Child with Cancer
 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
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 Within 2 weeks of diagnosis, 85% of
parents report significant distress
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Parents
 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
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 Siblings report loneliness, marginalization,
jealousy and worry
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Siblings
 Parenting stress is common: overprotection, 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
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 Marital distress is reported within 40% of
families
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Family
 Treatment becomes more predictable, but
with times of transition and uncertainty
 Side effects, complications and possibility
of recurrence/relapse remain stressful
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 Remission and illness stabilization occurs
for most children
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Illness Stabilization
 Some reports suggest LOWER levels of
depression and anxiety than healthy
children
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 During treatment children with cancer
continue to show little or no evidence of
emotional or behavioral problems
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Child with Cancer
 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
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 Two-thirds of parents report that dealing
with their own intense emotions is the greatest
challenge
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Parents
 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
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 Within a few months of diagnosis, 44% of
parents qualify for a diagnosis of PTSD
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Parents
 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
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 Separation from parents and poor
communication fuels confusion and anxiety
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Siblings
 Parenting stress increases once the child
reaches remission
 Overprotection and conflicts between
parents and children are typical
 Role overload is common
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 Significant marital distress is reported by
25 to 30% of parents in the year postdiagnosis
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Family
 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
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 May be months or years after diagnosis
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End of Treatment
 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
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 For most survivors, no evidence of
depression or anxiety
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Adolescent Survivors
 Young Adult survivors may report more PTS
symptoms than adolescent survivors or
controls
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 Transition to young adulthood may be more
difficult
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Young Adult Survivors
 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
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 Distress and anxiety spike at end of
treatment, then improve
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Parents
 About one-third report moderate to severe
PTS, significantly greater than controls
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 No evidence of increased anxiety and
depression long-term for siblings, but very
little research
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Siblings
 Family members may adjust at different
speeds and in different ways
 Disappointment may arise if there are
expectations that things will return to “normal”
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 Family patterns forged during treatment
may persist
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Family
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Evolution of
the Traumatic
Stress Model
 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
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 Little evidence of anxiety, depression and
PTS symptoms in children with cancer
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Summary of Research
 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
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 Rarely Anxiety, Depressive Disorders
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Qualitative Differences
 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
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Pediatric Medical Traumatic Stress:
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Evolution: Medical Trauma
 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
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Trauma symptoms as normative and adaptive
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Evolution: Trauma Model
 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)
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Potential positive outcomes: resilience, growth
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Evolution: Trauma Models
 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
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 More positive view of life; good self-esteem;
broader perspective
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Adolescent Survivors
 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
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 Parents:
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Family Members
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Helping
your
Family
Cope
 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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with yourself, your family, and treatment. It takes time:
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Be patient…
 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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understand what is happening. Talk to them;
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Help your children…
 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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with family and friends. It is important to:
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Share your feelings…
 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
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to help you and your family. Ask or allow
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Rely on others…
 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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and maintain rules. Consistency helps:
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Establish routines…
 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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of yourself. To be at your best:
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Take care…
 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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from a psychosocial provider when:
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Ask for help…
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Conclusions
 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
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 Distress is greatest at diagnosis and
improves over time reaching near normal
levels by 2 years post-diagnosis
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Summary
 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
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 Diagnostic criteria should not constrain our
conceptualization of the cancer experience
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Conclusions
- 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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To maximize adjustment:
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Conclusions
Melissa A. Alderfer, PhD
Nemours Children’s Health System &
Stanley Kimmel Medical College at Thomas Jefferson University
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Thank you for your
attention!