Cancer

1
Cancers Effect on Families
Melissa A. Alderfer, PhD Nemours Childrens
Health System
Stanley Kimmel Medical College at Thomas
Jefferson University
2
Goals and Overview

• 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

3
Families and Childhood Illness
4
Families Illness

• The family provides the context in which
  childhood illness is managed
• 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

5
Individual Reactions

• 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

6
Depression

• Depression symptoms
• 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
• fatigue, loss of energy
• feelings of worthlessness, excessive guilt
• diminished ability to think or concentrate
• recurrent thoughts of death or suicide

7
Anxiety

• Anxiety symptoms
• 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

8
Individual Reactions

• 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

9
Posttraumatic Stress

• Intrusion, re-experiencing symptoms
• 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

10
Posttraumatic Stress

• Negative alterations in cognitions and mood
• 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

11
Posttraumatic Stress

• Increased arousal and reactivity
• difficulty falling or staying asleep
• irritability or outbursts of anger
• reckless or self-destructive behavior
• difficulty concentrating
• hypervigilance
• exaggerated startle response

12
Family Reactions

• Structural changes
• 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

13
The Experience of Childhood Cancer
14
Diagnosis

• 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 childrens
  hospital
• The child may need extensive, invasive
  diagnostic tests

15
Treatment Initiation

• 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

16
Diagnosis Treatment Initiation

• Range of expected strong emotions across family
  members
• Shock, disbelief, denial
• Confusion, frustration
• Fear, worry, helplessness
• Sadness, mourning, grief
• Guilt, anger

17
Child with Cancer

• 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

18
Parents

• 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

19
Siblings

• 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

20
Family

• 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

21
Illness Stabilization

• 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

22
Child with Cancer

• 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

23
Parents

• 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

24
Parents

• 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

25
Siblings

• 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

26
Family

• 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

27
End of Treatment

• 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

28
Adolescent Survivors

• 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

29
Young Adult Survivors

• Transition to young adulthood may be more
  difficult
• Young Adult survivors may report more PTS
  symptoms than adolescent survivors or controls

30
Parents

• 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

31
Siblings

• 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

32
Family

• 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

33
Evolution of the Traumatic Stress Model
34
Summary of Research

• 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

35
Qualitative Differences

• 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

36
Evolution Medical Trauma

• 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

37
Evolution Trauma Model

• 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

38
Evolution Trauma Models

• 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)

39
Adolescent Survivors

• 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

40
Family Members

• 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

41
Helping your Family Cope
42
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

43
Help your children

• understand what is happening. Talk to them
• be age-appropriate (young children dont 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 dont have to
  have all the
  answers)

44
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

45
Rely on others

• 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
• Dont try to go it alone

46
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

47
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 cant control
  focus
  on what you can control
• look for realistically positive aspects of
  your experience
  
• Replenish yourself

48
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 arent improving with time
• differences in coping style are causing
  relationship problems
• you have concerns and need advice
• Get help when needed
  

49
Conclusions
50
Summary

• 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

51
Conclusions

• 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

52
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

53
Thank you for your attention!
Melissa A. Alderfer, PhD Nemours Childrens
Health System
Stanley Kimmel Medical College at Thomas
Jefferson University