Alex's Lemonade Stand Foundation holds an annual Childhood Cancer Symposium in Philadelphia. It is designed to be an educational resource, providing families with the opportunity to learn about issues and topics of treatment and beyond, while meeting other families in a group setting. Registration is free and is open to all those touched by childhood cancer, including patients and their siblings. Presentation by: Melissa Alderfer, PhD.

1. at The Children’s Hospital of Philadelphia
The Cancer Center
Coping with Cancer:
A family journey
Melissa A. Alderfer, PhD
The Children’s Hospital of Philadelphia &
The University of Pennsylvania School of Medicine

2. Overview
at The Children’s Hospital of Philadelphia
 Discuss a traumatic stress model that we
The Cancer Center
find helpful in understanding coping with
childhood cancer
 Summarize what we know about the
psychosocial impact of childhood cancer on
families
 Provide suggestions for maximizing
adjustment to cancer

3. Cancer
Traumatic
of Childhood
Stress Model
The Cancer Center
at The Children’s Hospital of Philadelphia

4. Traumatic Stress Model
 Traumatic Stress Models have been discussed
at The Children’s Hospital of Philadelphia
dating back to the nineteenth century
The Cancer Center
- Railway Spine: nightmares, avoidance, chronic pain
- Hysteria: agitation, dissociation
- Soldier’s Heart: cardiovascular activation, fatigue
- Shell Shock: memory loss, emotional outbursts, numbing
 Conceptualization of the phenomenon developed
through the years
 In 1980, Posttraumatic Stress Disorder was
defined by the American Psychiatric Association

5. Traumatic Stress Model
 A “normal” reaction to catastrophic event
at The Children’s Hospital of Philadelphia
The Cancer Center
 Traumatic event:
- involves actual or threatened death or serious injury or a
threat to the physical integrity of self or others
- produces intense fear, horror, or helplessness
 Symptoms include intrusive memories, avoidance,
and physiological arousal
 “Diagnosis of a life threatening illness” and
“learning that one’s child has a life-threatening illness”
specifically listed as potentially traumatic events

6. Traumatic Stress
 Re-experiencing of the event
at The Children’s Hospital of Philadelphia
The Cancer Center
- Recurrent, intrusive, distressing recollections
- Recurrent distressing dreams
- Acting or feeling as if the event is recurring
- Intense psychological distress at exposure to internal or
external cues that symbolize or resemble the event
- Physiological reactivity to such cues

7. Traumatic Stress
 Avoidance and numbing
at The Children’s Hospital of Philadelphia
The Cancer Center
- Efforts to avoid thoughts, feelings, conversations
- Efforts to avoid activities, places or people
- Inability to recall an important aspect
- Diminished interest or participation in significant activities
- Feelings of detachment or estrangement
- Restricted range of affect
- Sense of foreshortened future

8. Traumatic Stress
 Increased arousal
at The Children’s Hospital of Philadelphia
The Cancer Center
- Difficulty falling or staying asleep
- Irritability or outbursts of anger
- Difficulty concentrating
- Hypervigilance
- Exaggerated startle response
 To qualify for a diagnosis of PTSD
- 1 re-experiencing, 3 avoidance, 2 arousal symptoms
- Symptoms for at least 1 month
- Significant distress or impairment in functioning

9. Traumatic Stress Model
 Continues to evolve, draw on coping literature
at The Children’s Hospital of Philadelphia
The Cancer Center
 Trauma symptoms may be 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

10. Traumatic Stress Model
 Premise: Traumatic events challenge the patterns
at The Children’s Hospital of Philadelphia
of thoughts and behaviors that allow people to
The Cancer Center
function on a daily basis
 “Psychologically seismic events that can severely
shaken, threaten or reduce to rubble many of the
schematic structures that have guided understanding,
decision making, and meaning in the world”
 Can lead to distress or provide the opportunity for
generative experiences, positive growth, enhanced
adjustment

11. Families
Impact of
Cancer on
Psychosocial
The Cancer Center
at The Children’s Hospital of Philadelphia

12. Patterns of Response
 Different patterns of response are possible:
at The Children’s Hospital of Philadelphia
The Cancer Center
- Hardy (minimal, temporary distress)
- Chronically Distressed (consistent high levels of distress)
- Resilient (high levels of distress that improve)
- Delayed Distress (late increases in distress)
- Enhanced Functioning (better than baseline)
 Most children with cancer are Hardy; some
evidence of Delayed Distress in young adult survivors
 Most parents and siblings show Resilience
 Growing evidence of Enhanced Functioning

13. Diagnosis
 Range of expected strong emotions across
at The Children’s Hospital of Philadelphia
family members:
The Cancer Center
- Shock, disbelief, denial
- Confusion, frustration
- Anxiety, fear, helplessness
- Sadness, mourning, grief
- Guilt, anger

14. Diagnosis
 Within 2 weeks of diagnosis, 85% of parents report
at The Children’s Hospital of Philadelphia
significant distress
The Cancer Center
 Parents have more anxiety, poorer quality of life,
and more symptoms of depression
 Within 1 month of diagnosis, 51% of moms, 40% of
dads qualify for a diagnosis of Acute Stress Disorder
 Within 1 month of diagnosis
- 75-83% of parents reported re-experiencing
- 70-83% reported avoidance
- 83% reported arousal

15. Diagnosis
 The reactions of the child with cancer to diagnosis
at The Children’s Hospital of Philadelphia
vary depending upon his or her age
The Cancer Center
 Some symptoms of anxiety, fear, and sadness are
common
 May see some developmental regression
 Overall, research does NOT indicate increased
rates of depression or traumatic stress symptoms in
patients shortly after diagnosis

16. Diagnosis
 Siblings report loneliness, marginalization,
at The Children’s Hospital of Philadelphia
jealousy and worry
The Cancer Center
 Within 1 month of diagnosis, 57% of siblings report
impaired emotional quality of life
 Nearly 40% of siblings report significant difficulties
with memory concentration and learning within one
month after cancer diagnosis
 Rates of traumatic stress symptoms have been
unexplored

17. Diagnosis
 Marital distress is common: 40% of married
at The Children’s Hospital of Philadelphia
parents indicating problems
The Cancer Center
 Parenting stress is typical: 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
 Benefit finding and traumatic growth have been
unexplored

18. Treatment
 Two-thirds of parents report that dealing with
at The Children’s Hospital of Philadelphia
their own intense emotions and traumatization is
The Cancer Center
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 for parents

19. Treatment
 At 6 months post-diagnosis, 40-50% of parents
at The Children’s Hospital of Philadelphia
continue to report increased distress
The Cancer Center
 During the first few months of treatment about
44% of parents qualify for a diagnosis of PTSD
 About one year after diagnosis, 68% of moms
and 57% of dads report moderate to severe PTS
 By 24 months post-diagnosis most parents report
distress levels at normative levels; a small subgroup
remain distressed

20. Treatment
 During treatment children with cancer continue
at The Children’s Hospital of Philadelphia
to show little or no evidence of emotional or
The Cancer Center
behavioral problems
 Some reports suggest LOWER levels of
depression and anxiety than healthy children
 Traumatic stress symptoms are present, but
mean levels are no different from healthy children

21. Treatment
 Disruptions in family life take a toll on siblings;
at The Children’s Hospital of Philadelphia
absence of their brother or sister, separation from
The Cancer Center
parents and poor communication fuels confusion
and anxiety
 Three-fold increase in behavior problems, two-
fold increase in emotional problems, decrements in
quality of life, declines in school performance for
siblings
 Within 2 years of diagnosis, 25% qualify for a
diagnosis of PTSD, 60% in moderate to severe
range for PTS
 Report positive aspects of the experience

22. Treatment
 Significant marital distress continues to be
at The Children’s Hospital of Philadelphia
reported among 25 to 30% of parents throughout
The Cancer Center
the first year post-diagnosis
 Inconsistent discipline continues as parents often
feel guilty about putting their child through treatment
 Role overload is common as family members
must juggle their typical responsibilities with needs
of treatment
 Parenting Stress increases once the child
reaches remission

23. Survivorship
 Time of ambivalent feelings: relief and joy coupled
at The Children’s Hospital of Philadelphia
with fear and uncertainty
The Cancer Center
 Depression and anxiety scores no longer elevated
for most, a subset of parents continue to have
distress
 Traumatic Stress symptoms remain:
- Moms: 14 to 20% with current PTSD, 27 to 30% with
PTSD at some time since diagnosis of cancer; up to
44% in moderate to severe range
- Dads: 10% current PTSD, 12% PTSD since cancer; 33
to 35% in moderate to severe range

24. Survivorship
 97% of moms, 87% of dads indicate at least one
at The Children’s Hospital of Philadelphia
symptom of re-experiencing
The Cancer Center
 64% of moms, 44% of dads report at least 2
symptoms of physiological arousal
 34% of moms, 16% of dads report at least 3
symptoms of avoidance
 Parents also report positive outcomes of the
experience
- 86% of moms and 62% of dads indicate a positive
change in the way they think about their life
- 58% of moms and 48% of dads indicate a positive
change in how they treat others

25. Survivorship
 Adolescent survivors report some traumatic
at The Children’s Hospital of Philadelphia
stress:
The Cancer Center
- 5% current PTSD; 8% PTSD since cancer diagnosis
- 12-18% moderate to severe traumatic stress
- 73% report re-experiencing; 41% report arousal; 16%
report avoidance
 More positive view of life, good self-esteem,
broader perspective
 Enhanced maturity, greater compassion and
empathy, new values and priorities, new strengths
 53% indicate a positive change in how they think
about life; 42% indicate a positive change in their
plans for the future

26. Survivorship
 Young adult survivors of childhood cancer do not
at The Children’s Hospital of Philadelphia
show elevated rates of anxiety or depression
The Cancer Center
 Report more traumatic stress than adolescent
survivors or controls:
- 18-22% current PTSD; 21% PTSD since cancer
- 80% report re-experiencing; 42% report arousal;
44% report avoidance

27. Survivorship
 Family patterns forged during treatment may
at The Children’s Hospital of Philadelphia
continue and marginalize siblings
The Cancer Center
 Among siblings of survivors, about 32% report
moderate to severe PTS
 Siblings report many positive outcomes:
- enhanced maturity, responsibility, independence and
personal growth
- more empathy, thoughtfulness, compassion

28. Summary
 Distress is greatest at diagnosis and improves
at The Children’s Hospital of Philadelphia
over time reaching near normal levels by 2 years
The Cancer Center
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

29. your
Cope
Family
Helping
The Cancer Center
at The Children’s Hospital of Philadelphia

30. Be patient…
with yourself, your family, and treatment. It takes time:
at The Children’s Hospital of Philadelphia
 to learn about cancer, treatment and the medical system
The Cancer Center
 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

31. Help your children…
understand what is happening. Talk to them;
at The Children’s Hospital of Philadelphia
 be age-appropriate (young children don’t need detail; explain
The Cancer Center
physical changes, treatment course, changes in routine)
 be reassuring and supportive (this is not punishment; it is not
contagious; they will not be abandoned; their 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)
Talk with your children

32. Share your feelings…
with family and friends. It is important:
at The Children’s Hospital of Philadelphia
The Cancer Center
 to recognize how your thoughts and feelings impact your
behavior with others
 to talk about how you feel
 to share your feelings with and encourage children to
express their feelings
 to understand positive emotions are OK
 to accept the feelings of others
Emotional connections help

33. Rely on others…
to help you and your family. Ask or allow
at The Children’s Hospital of Philadelphia
The Cancer Center
 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

34. Establish routines…
and maintain rules. Consistency helps:
at The Children’s Hospital of Philadelphia
The Cancer Center
 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”

35. Take care…
of yourself. To be at your best:
at The Children’s Hospital of Philadelphia
The Cancer Center
 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
 look for realistically positive aspects of
your experience
 don’t pressure yourself to do too much
Replenish yourself

36. Ask for help…
from a psychosocial provider when:
at The Children’s Hospital of Philadelphia
The Cancer Center
 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

37. Conclusions
 Childhood cancer is a
at The Children’s Hospital of Philadelphia
stressful, potentially traumatic
The Cancer Center
event
 Research documents high
levels of distress for families
that improve with time
 A Traumatic Stress Model
seems to capture the nature of
cancer-related distress
- explains symptoms of distress
- explains possibility of growth

38. Conclusions
at The Children’s Hospital of Philadelphia
 To maximize adjustment:
The Cancer Center
- 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 you need it