Posttraumatic Growth as Experienced
by Childhood Cancer Survivors and
Their Families
Beyhan Duran, RN, MS, OCN
PhD Candidate, UConn SON,
Medical Oncology Nurse
Yale Cancer Center
Sept 3, 2013
Declaration of Conflicting Interest
I declared no potential conflicts of interest
or no financial support for this research.
Acknowledgement
Special thanks to the DeVita family for the
permission to use their family photos in
this presentation
Structure of My Presentation
• Present a brief background on childhood cancer
• Talk about theoretical perspectives on growth
• Explain the methodological steps of doing a
narrative synthesis
• Summarize the results of the positive effects of
cancer as perceived by childhood cancer
survivors and their families
Posttraumatic Growth as
Experienced by Childhood Cancer
Survivors and Their Families
Duran, B. (2013). Posttraumatic growth as experienced by childhood
cancer survivors and their families: a narrative synthesis of qualitative
and quantitative research. J Pediatr Oncol Nurs, 30(4), 179-197.
Background
• Before the 1980s, children w/ cancer were
almost certain to die of their illness.
• The median survival time for acute
lymphoblastic leukemia (ALL), the most
common cancer in children, was only 3 to 6
months after diagnosis.
• The bulk of the literature before the 1980s
covered topics on death and dying.
(Brad & Copeland, 1987; Grootenhuis & Last, 1997).
Advances in Pediatric Oncology
• In 2000, the four major childhood cancer
research groups merged to become the
largest randomized clinical trial group w/
a new unified name, the Children’s
Oncology Group (COG) in the US (Armstrong
& Reaman, 2005).
Advances in Pediatric Oncology
• As a result, there was a stunning progress in
both the treatment of childhood cancer, and
psychological studies
• Childhood cancer has been reclassified as a
chronic, life-threatening but curable illness.
• The five-year cancer free survival rate is now
80%.
• The 10-year survival rate is almost 75%.
(ACS, 2013: Cancer Treatment & Survivorship Facts & Figures
2012-2013; Armstrong & Reaman, 2005, J Ped Psychol, 30(1),
89-97; Oeffinger et al., N Engl J Med, 2006; 355(15), 1572–82)
Context of this presentation
• Illness-related crises challenge people’s
worldviews and values.
• Struggling with these challenges, some
people not only recover from their
illnesses, but also surpass their previous
psychological and social functionality.
• They reach their full potentials or
capacities.
Take Home Messages
Dealing with a life-threatening illness may
serve as an opportunity for:
• positive psychological changes,
• self-renewal,
• spiritual and personal growth,
• achieving higher level of functioning
(Calhoun & Tedeschi, 2006; Jaffe, 1985; James & Samuels,
1999; Jim & Jacobsen, 2008; Tu, 2006).
Posttraumatic Growth
• Posttraumatic growth is a positive
psychological change that comes after
struggling with highly challenging life crises
(Tedeschi & Calhoun, 2004)
Signs of Posttraumatic Growth
• greater appreciation of life and changed
sense of priorities
• warmer, more intimate relationships with
others
• a greater sense of strength
• recognition of new possibilities or paths
for one’s life
• spiritual development
(Tedeschi & Calhoun, 2004)
The Review
Systematic Narrative Synthesis
Duran, B. (2013). Posttraumatic growth as experienced by childhood
cancer survivors and their families: a narrative synthesis of qualitative
and quantitative research. J Pediatr Oncol Nurs, 30(4), 179-197.
Research Design
• Research design was narrative synthesis in
systematic reviews.
• The guidance for this narrative synthesis
was recently formulated and developed by
the British health research scholars
(Centre for Reviews and Dissemination, 2009; Popay et al. 2006,
Guidance on the Conduct of Narrative Synthesis in Systematic
Reviews)
Narrative Synthesis
• It is an approach to synthesize findings from
multiple studies,
• it relies primarily on the use of words and
text to summarize and explain the findings of
synthesis.
(Popay et al., 2006)
Aim
• It examines existing literature on the
positive effects of cancer and/or the
perception of benefit finding among
childhood cancer survivors and their
families.
Inclusion Criteria
Inclusion Criteria
• Written in English
• Has clearly described methods
• Focuses on childhood cancer survivors
• Focuses on the positive effects of cancer
• Reports at least one positive growth
outcome
• No date restrictions applied because of
the limited number of studies available
Sample
• N=35 primary studies (1975 – 2010)
– 30 published
– 5 doctoral dissertations
• Sample Design
– Quantitative, N=20
– Qualitative, N=12
– Mixed studies, N=3
Sample-Participants
•
•
•
•
•
•
Childhood cancer survivors, N= 2087
Parents, N= 1115
Mothers, N= 689
Fathers, N= 341
Listed only as “parents” = 85
Healthy siblings, N=159
Table 1 illustrates the country of
origin of these papers (N=35)
Country
Published Papers
Canada
3
Finland
2
Hawaii
1
Ireland
1
Italy
1
Sweden
1
The Netherlands
1
UK
2
USA
23
Data Analysis
• Preliminary Data Analysis
– Textual descriptions of studies
– Groupings and clusters
– Tabulation
– Transforming quantitative data into a
common themes/categories
– Translating data; thematic synthesis
Table 2. Example of Methodological Characteristics of the Qualitative
Individual Studies Included in This Review (N = 15).
Studies
Discipline
(Norberg &
Green, 2007)
Women & Child
Health
(Prouty et al.,
2006)
Nursing
(Parry &
Chesler, 2005)
Social Work &
Sociology
Country
Research
Design
Data
Collection/Data
Analysis
Qualitative
Audio-taped
interview;
Thematic
analysis
USA
Qualitative
Audio-taped
interview;
Phenomenologic
al study
USA
Qualitative
Constant
comparison and
analytic
induction
In-depth
Qualitative
interviews
Sweden
Table 3. Example of Demographic Characteristics of the
Qualitative Individual Studies Included in This Review (N = 15).
Author
(Year)
Participants
Ages of
Survivors
At diagnosis
Cancer
Survivors’
Diagnosis
Time Elapsed Major
Since
Results
Treatment
Ended
(Michel et al., 40 Mothers, 6
2010)
fathers,
41 adolescent
survivors (22 girls,
19 boys)
12-15 y/o
Mean age at dx
was 5 yrs
Leukemia, CNS
or solid tumor
6.6 years
Leukemia
survivors
reported more
benefit-finding
than solid
tumor
survivors did.
(Fritz, 2005)
Current age 18- Leukemia
27 yrs. Age at
Dx
7- 16 yrs.
Off treatment
for more than
5 years
Many mothers
reported
experiencing
personal
growth,
personal
strength, a new
attitude, and a
newfound
voice
12 mothers,
3 fathers,
17 Survivors (10
female, 7 male)
Figure illustrates the line-by-line coding
using screenshots of Atlas.ti.
Qualitative
Studies
Quantitative
Studies
Figure 1. Review Process (Adapted from Harden et al., 2004; Harden &
Thomas, 2005; Popay et al., 2006; Pope et al., 2007).
This is how I felt after data analysis!
Positive Effects of Childhood
Cancer
RESULTS
Five core themes were identified:
1. Making sense of cancer experience
2. Appreciation of life
3. Greater self-knowledge
4. Positive attitudes toward family
5. A desire to pay back society
Meaning-Making
It is not what happens to you, but the
way you take it
-Hans Selye
Meaning-making refers to
• “[the process of survivors] coming to see
the situation in a different way and
reviewing one’s beliefs and goals in order
to regain consistency among them” (Park
& Ai, 2006, p. 393).
• In other words, we try to understand our
appraised meaning of an event when our
believe system is disrupted or violated
(Park & Folkman, 1997).
Parental Reactions to the Bad
News
• Several mothers reported that they were
puzzled after hearing their child’s diagnosis.
• “How could this be possible? This isn’t
supposed to happen to us?”
• “[W]hy does God let anything like this
happen?”
(Cohen, 1994, p. 130; McCubbin, at al., 2002, p. 105).
Making sense of cancer
experience
Positive meaning-making outcomes:
 Religious meaning-making
 Meaning-making through being “Special”
 Meaning-making through benefit-finding
Randomness of events
There is no answer
Religious Meaning-Making
• This newfound meaning was expressed in
explicitly religious terms by some parents
and in philosophical terms by others
(Slavin, 1981).
• The families who found religious meaning
in their misfortune believed that God had
a plan as to why the cancer survivors
lived, whereas others died.
(
Britt, 1992; Chesler & Barbarin, 1987; Cohen, 1994; Gogan &
Slavin, 1981).
Religious Meaning-Making
One of the survivors reported:
“[My mother] always said, ‘There is a reason
why you lived. God has plans for you. You
are going to do great things. You are going
to do something’” (Cohen, 1994, p. 147).
Religious Meaning-Making
• When families exhaust all possible means
to make sense of their life-threatening
event, religious beliefs become a
psychological antidote to foster hope and
meaning of illness.
Religious Meaning-Making
• Religious beliefs may positively influence
the grieving process by providing
believers with ready-made
interpretations or frames of reference
with meaning and explanation for
otherwise meaningless phenomena.
(Gray, 1987; Pargament & Park, 1995; Spiro, 1966)
Meaning-Making through
Benefit-Finding
“I’m no longer angry at why she got it, at all.
And I don’t ask, ‘Why us?’ anymore,
because there have been too many positives
out of it; to a newly diagnosed family, you
could never say that, but there was good”
(Mother, Britt, 1992, p. 72).
Meaning-making through
being “Special”
• Some cancer survivors believed that they
survived because they were “special.”
• They felt that a “life force” controlled
their life and spared them from death.
(Fritz, 2005; O'Malley, 1981; Parry, 2003)
Unable to Find Meaning
• Some families reported that they were
unable to find any answers for their
child’s misfortune.
• They finally resolved this question to their
satisfaction by accepting that no answer
can be found.
(Chesler & Barbarin, 1987; Foster, O'Malley, & Koocher, 1981)
Randomness of the Event
• The belief that a child’s cancer was a
random event was held by 72% of cancer
survivors, 62% of mothers, and some
siblings.
(Fritz, 2005; Kazak, Stuber, Barakat, & Meeske, 1996)
Appreciation of life
You cannot understand “being” (life) until you
experience and fully comprehend “nonbeing” or “nothingness” (death).
(Sartre, 1943/1984, Being and Nothingness)
Appreciation of life
• Individuals faced with trauma tend to
experience an increased sense of
vulnerability.
• This existential reevaluation of one’s life
made the majority of young cancer
survivors realize that life is fragile and
hence very precious.
(Janoff-Bulman, 1992, 2004)
Life is Precious
“I have a whole new outlook on life. After
what I’ve been through, I realized how
precious life is, instead of taking it for
granted. It’s just too short”
(Karian, Jankowski, & Beal, 1998, p. 157)
Acquired New Philosophy of Life
Life philosophy refers to the sum of a person’s
attitudes, beliefs, and values about how the
world functions, including social cognitions
about oneself, as well as one’s social and
objective environment
(Inglehart, Reactions to critical life events, 1991, p. 171).
Acquired New Philosophy of Life
• Nine cancer survivors and three parents
in eight studies reported that they
developed a greater sense of appreciation
of the time they had, the here and now.
• They all believed that one should live life
consciously and to the fullest while being
here in the present moment
( Chesler, Weigers, & Lawther, 1992; Cohen, 1994; Gray, et al., 1992;
Kaffenberger, 1999; Karian, et al., 1998; Parry, 2003; Parry &
Chesler, 2005; Van Dongen-Melman, et al., 1998).
New values and life
priorities
“Having cancer has really shown me what is
important in life -- how all the petty things
I used to worry about really mean nothing”
(Adolescent Sarcoma Survivor, Novakovic, et al., 1996, p. 58)
Greater self-knowledge
The most commonly reported statements by
young survivors were:
• “My self-esteem has improved,” (Cohen, 1994, p. 76)
• “I’m a better person because of the cancer”
(Karian, et al., 1998, p. 158).
• “I do believe that we are the sum of our
experiences. I am now who I am because of
what happened to me” (Cohen, 1994, p. 87).
Grow Up Faster
• One of the most common comments
made by survivors was that they felt they
grew up faster and became more mature
than their peers as a result of dealing with
cancer.
(Chesler, et al., 1992; Cohen, 1994; Fritz & Williams, 1988; Holmes &
Holmes, 1975; Kaffenberger, 1999; Karian, et al., 1998; Parry &
Chesler, 2005; Wasserman, Thompson, Wilimas, & Fairclough,
1987).
Grow Up Faster
“You have to grow up so fast. One minute
you’re a little kid, playing with your
friends and Barbies, and the next minute
you’re in the hospital with people you
don’t know, and kids are dying around
you every day”
(Survivor, Parry & Chesler, 2005, p. 1062).
Family Closeness and
Togetherness
The majority of families and the
survivors reported that
• their experience with their/child’s illness
had a positive effect on family life,
• they place greater value on relationships,
• they have more satisfaction and
improvement in family relationships,
• less personal stress associated with
medical situations
(Britt, 1992; Chesler & Barbarin, 1987; Cohen, 1994; Fritz, 2005;
Kaffenberger, 1999; Karian, et al., 1998; McCubbin, et al., 2002;
Quin, 2004).
A desire to pay back society
The most fulfilling kind of life is one lived in
service to others
– Mahatma Gandhi
Many survivors reported that
• they served as peer counselors.
• talked to newly diagnosed children and
their families.
• supporting other families was very
meaningful to them
• they became sensitive toward others in
similar situations.
(Kaffenberger, 1999; Karian, et al., 1998).
Importance of the
Knowledge to be Gained
• This narrative synthesis aims to educate
nurses, social workers, oncologists, and
researchers about the positive outcomes of
childhood cancer.
• The information presented here can
facilitate interventions
– to enhance the quality of life,
– to aid rehabilitation efforts, and
– to guide the health promotion behavior of
parents who have children with cancer.
In Conclusion
• The challenges of cancer “holds up a
great mirror to [survivors] and let them
look at [themselves] in their infinitive
variety. This… is the meaning of [cancer’s]
work in [previously naïve, unchallenged
cancer victims].”
(Clyde Kluckhohn, 1949, p. 11, Mirror For Man: The relation of
Anthropology to modern Life).
Thank you
For your Time!
For any questions: beyhan.duran@yale.edu