EMOTION REGULATION, EXECUTIVE FUNCTIONING, AND
UNDERSTANDING OF INTENTIONALITY IN CHILDREN
WITH A HISTORY OF PEDIATRIC CANCER
BY
ALEXANDRA MARIE DELONE
A Thesis Submitted to the Graduate Faculty of
WAKE FOREST UNIVERSITY GRADUATE SCHOOL OF ARTS AND SCIENCES
in Partial Fulfillment of the Requirements
for the Degree of
MASTER OF ARTS
Psychology
August 2014
Winston-Salem, North Carolina
Approved By:
Deborah L. Best, Ph.D., Advisor
Janine M. Jennings, Ph.D., Chair
Lisa Kiang, Ph.D.
Thomas W. McLean, MD
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ACKNOWLEDGMENTS
Thank you to my amazing family! Mom, Dad, Victoria, and Charles: I could
never have completed this program or project without your help and encouragement.
You are my favorite people in the whole world and I would be entirely lost and would
have much less fun without you!!
Preparing for this project was a “clan” effort! Victoria, thank you for being my
master artist and giving up hours and hours of your Christmas break to draw cartoons!
My wonderful colorers: Victoria, Charles, Ashton, Brett, Elaine, Gail, Claire, Natalie,
Brooke, Molly, Rachel, and Zoe, thank you for spending multiple snow days coloring
pictures to my specifications. Charles and Gaily, you two were cast perfectly as the robot
and narrator! I wish you could have seen the kids smile as they thought they were
playing with a “real” robot and talking to the storyteller.
To my ribbon makers: Lauren, Stephanie, Julia, Natalie, and Jamie, your efforts
helped to sell this project to the kids who were unsure about playing with a stranger. All
of the kids loved picking and giving away their little surprise!
Thank you to all of the girls in Best Lab! You were so helpful in getting materials
organized and sharing your ideas. Kelsey, there is no way in the world that I could have
logistically completed this project without you! Plus, it was always so much more fun
when you were around! Thank you for willingly making early morning runs to the
preschools and hospital in hopes of nabbing a few kids.
Dr. Simonian, thank you for teaching me to love psychology and supporting me
throughout college and graduate school. Without you as an advisor, my life may have
taken a very different path!
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Debbie, thank you for being a wonderful advisor throughout my time at Wake
Forest! I came to you with an inkling that I wanted to work with children with pediatric
cancer and you helped me explore this by supporting my summer away at St. Jude and
working overtime to design this project. I know it required so much extra work on your
part and I truly appreciate everything you did to make it happen.
Dr. McLean, a few months ago, I was a random student who sent you a request to
become involved in my research project. Not only did you respond positively, but you
have gone above and beyond the call of duty every time I have needed anything. Most of
all, thank you for sharing your kids with me. I have enjoyed every child and family I
have had the pleasure of meeting.
Janine and Lisa, thank you for all of the hours you gave up to make my project the
best it could be through your input and suggestions. Without you, I would not have
incorporated the ribbons. Although I can never get back the many hours of my life
devoted to crafting these prizes, they made all the difference by helping me win over
teachers, the clinic staff, and hesitant kids.
I wanted to pursue this project because of the phenomenal experience I had during
my summer as a Pediatric Oncology Education intern at St. Jude Children’s Research
Hospital. Dr. Gronemeyer and Dr. Phipps, you have devised a program that changes the
life of every young person who is lucky enough to participate.
Finally, I want to thank all of the children, families, doctors, nurses, and staff I
have had the privilege of meeting at St. Jude and at Brenner Children’s Hospital. Thank
you for your devotion to these kids and helping them fight. To the little ones, you are so
brave and an inspiration to others by showing what it means to never give up!!
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TABLE OF CONTENTS
LIST OF TABLES ...............................................................................................................v
LIST OF APPENDICES .................................................................................................... vi
ABSTRACT ...................................................................................................................... vii
INTRODUCTION ...............................................................................................................1
Cognition...................................................................................................................2
Family Emotionality .................................................................................................3
The Development of Emotion Regulation ................................................................5
The Development of Executive Functioning ............................................................7
The Development of Identifying Intentionality ......................................................10
The Impact of Pediatric Cancer on Developmental Processes ...............................13
METHOD ..........................................................................................................................17
Participants .............................................................................................................17
Parent Measures .....................................................................................................24
Child Tasks ............................................................................................................29
Procedure ...............................................................................................................33
RESULTS ..........................................................................................................................38
Differences on EF, Emot. Reg., and Identifying Intentionality .............................42
Differences in Parent Measures .............................................................................46
Hierarchical Regression Analyses .........................................................................52
DISCUSSION ....................................................................................................................58
REFERENCES ..................................................................................................................70
APPENDICES ...................................................................................................................77
CURRICULUM VITAE ..................................................................................................108
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LIST OF TABLES
1 Gender and Ethnicity of Hospital and School Samples ............................................18
2 Diagnoses for Children with a History of Pediatric Cancer .....................................19
3 Treatment Modalities & Intensity for Children with a History of
Pediatric Cancer ........................................................................................................20
4 Caregivers Enrolled on Study for Hospital and School Samples .............................22
5 Parent and Family Demographic Information for Hospital and School Samples .....23
6 Factor Analysis of Parent Protectiveness Subscale ................................................. 28
7 Summary Table of Hypotheses and Measures ..........................................................34
8 Means and Standard Deviations for Parent Measures: Hospital
and School Samples .................................................................................................40
9 Means and Standard Deviations for Child Tasks: Hospital and School Samples.....41
10 Summary Table of Hypotheses, Measures, and Results ...........................................51
11 Correlations between Variables Considered for the Family
Emotionality Variable ...............................................................................................53
12 Hierarchical Regression for Variables Predicting Zoo Secret Sharing Task ...........54
13 Hierarchical Regression for Variables Predicting Ribbon Secret Sharing Task .......56
14 Hierarchical Regression for Variables Predicting Zoo Secret Sharing Task ............57
15 Hierarchical Regression for Variables Predicting Ribbon Secret Sharing Task .......58
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LIST OF APPENDICES
A Demographic Information ....................................................................................... 77
B Hospital Consent Form .............................................................................................78
C School Parent Letter and Consent Form ...................................................................83
D Parent – Family Expressiveness Questionnaire ........................................................85
E Parent – Emotion Regulation Checklist ....................................................................86
F Parent – Parent Emotion Checklist ...........................................................................87
G Parent – Child Health and Family Functioning Questionnaire .................................88
H Parent – Intensity of Treatment Rating .....................................................................89
I Child – Silly Sounds Task........................................................................................ 90
J Child – Secret Sharing Task .....................................................................................91
K Child – Identifying Intentionality .............................................................................93
L Correlations across Samples ...................................................................................105
M Correlations for Children with a History of Cancer................................................106
N Correlations for Children without a History of Pediatric Cancer ...........................107
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ABSTRACT
This study aims to identify early developmental processes that may be affected by the
experience of pediatric cancer in young children, with particular focus on emotion
regulation, executive functioning, and identifying the intentions of others. Additionally,
it was hypothesized that parents of children with and without a history of pediatric cancer
would have differing perceptions of their children. Thirty-nine children with a history of
pediatric cancer and 40 children without a history of pediatric cancer, ages 4-7, were
recruited for the current study. The children completed 4 tasks: the Peabody Picture
Vocabulary Test, Silly Sounds, Secret Sharing, and Identifying Intentionality. Parents
were asked to complete brief questionnaires. Differences were found between various
parent measures as well as cognitive ability and identifying intentionality. However,
there were fewer differences than expected. Despite a potentially stressful and emotional
pediatric cancer experience, results from this study suggest that certain developmental
processes are unaffected by the child’s history of pediatric cancer.
1
INTRODUCTION
In the United States, childhood cancer is the second leading cause of death for
children from birth to age 14, after accidental deaths (Murphy, Xu, & Kochanek, 2012).
However, medical advances in the last 50 years have changed the focus of pediatric
cancer care from dealing with a fatal illness to managing a chronic disease coupled with
uncertainty in survival (Armenian, Landier, Hudson, Robinson, & Bhatia, 2013;
Eisenberg, 1981). The national average for five-year event-free survival for children
diagnosed with pediatric cancers now exceeds 80% (Armenian et al., 2013). As the
number of pediatric cancer survivors increases, it is important to understand how the
experience of pediatric cancer affects developmental outcomes throughout child
development. This may be particularly important during the preschool years, where three
of the most common pediatric cancers (acute lymphoblastic leukemia (ALL), central
nervous system tumors, and retinoblastoma) have their highest incidences ("United States
cancer," 2009). Preschool age children diagnosed with pediatric cancer experience a
significant event during one of the most fundamental developmental periods and they
have a very high chance of surviving their disease. It is crucial to understand how their
overall disease experience may alter the course of their development. This study aims to
identify early developmental processes that may be affected by the experience of
pediatric cancer in young children.
It would be simplistic to examine treatment procedures and medical outcomes as the
sole source of developmental differences between children with and without a history of
pediatric cancer. Typical developmental influences, such as parental beliefs, are still very
much present. The interconnectedness of family members as well as the cultural
2
variability in family beliefs and practices in multicultural societies, such as the United
States, have long been appreciated and assessed in health care settings (Harkness &
Keefer, 2000; Kazak, 1997). In families of children with a history of pediatric cancer,
parents no longer respond only to the child, but also to an impending health crisis.
Parents have to cognitively process the fact that their child has been diagnosed with a
serious illness. They then react to the emotions they experience when learning of
pediatric cancer, including fear (Ehiwe, McGee, Filby, & Thompson, 2012). The
family’s cultural beliefs about the illness and the medical context must then be integrated
with the medical procedures. Simultaneously, the typical parent-child relationship must
be maintained. Development during a health crisis is a very complicated process, with
multiple sources of influence, all of which could lead to different developmental
outcomes for the child. Gaining a better understanding of the way parents and the child
interact as they react to the abnormal stressor of their child’s pediatric cancer could
provide insight into potential developmental differences between children with and
without a history of pediatric cancer.
Cognition
The earliest survivors of pediatric cancer could celebrate the fact that they beat
their disease but were left with relatively extreme cognitive deficits, or a decrease of
around 30 IQ points (Cousens, Waters, Said, & Stevens, 1988). Early research quantified
these cognitive deficits by measuring school performance or IQ points, but did not
specify more subtle areas of cognitive functioning (Costa, 2010; Cousens et al., 1988).
Researchers and practitioners agreed that future treatment protocols should strive to
reduce cognitive deficits. Advances in medicine made this goal realistic as radiation
3
therapy became used more sparingly and could be more targeted. Certain protocols, such
as ALL, were able to remove radiation therapy from standard cases (Campbell et al.,
2009).
Medical researchers continue to strive to improve pediatric cancer treatments to
maximize effectiveness against the disease and minimize impact to the child’s cognitive
ability. Still, integral treatment modalities, specifically cranial radiation therapy as well
as intrathecal chemotherapy, have been shown to cause long term cognitive changes in
survivors of pediatric cancer (Campbell et al., 2009; Carey et al., 2008; Conklin et al.,
2007; Lesnik, Ciesielski, Hart, Benzel, & Sanders, 1998). Today, children with CNS
treatment (intrathecal chemotherapy and cranial radiation) can develop problems with
visual processing, where they are less able to make sense of information presented
visually (i.e., interpreting a map). They can also develop difficulties with hand eye
coordination and subsequent visual-motor functions. Children who have received these
types of treatments can also develop attention difficulties and a decreased ability to
organize, hold, and manipulate information in their mind (Costa, 2010).
Although cognitive differences are readily reported, the typical effects are not as
severe as early treatment. A previous study reported no differences in teacher-reported
school performance, or enrollment in special education classes for pediatric cancer
survivors, including those who had received radiation therapy (Radcliffe et al., 1996).
Family Emotionality
Previous research highlights the importance of the parent child relationship in
shaping the child’s emotional development (Piotrowski, Lapierre, & Linebarger, 2013).
Through modeling and reinforcement children learn appropriate expressions and actions.
4
Children’s developmental outcomes are impacted by differing parenting practices and
parents’ own emotional states (Piotrowski et al., 2013). Not only has this interrelation
between parent and child emotions been shown to occur in more typical interactions, it
has also been found specifically in emotional responses to pediatric cancer. The parents’
emotional response to the stressors of pediatric cancer has a direct effect on the child’s
response to their own disease and impacts the child’s functioning (Brown et al., 1993;
Patterson, Holm, & Gurney, 2004).
Coping with pediatric cancer is a highly emotional experience and it follows that
families dealing with chronic illness would have different daily emotional reactions than
families who are not dealing with such an event (Coffey, 2006). A meta-analysis aimed
to identify patterns of parents’ emotional experiences for families of children with a
variety of chronic illnesses. The analysis found that parents of children with a chronic
illness live in an almost constant state of worry. Additionally, they struggle with the
daily, complex caregiving responsibilities, leading to anger and sadness (Coffeey, 2006).
In addition to the emotions relating to the chronic nature of their child’s cancer, parents
of children with pediatric cancer who are currently on treatment have reported feeling
numb, overwhelmed, devastated, and helpless. Additionally, they feel a loss of control,
fear for the child’s death, grief for the loss of their child’s “normal” life, and some
parents even report feelings of guilt (Patterson et al., 2004). After the conclusion of
therapy, parents maintain fear of a relapse and general anxiety about their child’s future
(Patterson et al., 2004). The known bi-directionality of emotional experiences between
parents and children with pediatric cancer coupled with the documented negative
emotions felt by these families increase the importance of examining developmental
5
differences in parents and children with and without a history of pediatric cancer.
Specifically, it is important to investigate whether the child’s experience with pediatric
cancer, including family emotions and treatment procedures, alters the development of
emotion regulation, executive functioning, and understanding of intentionality.
The Development of Emotion Regulation
Developmental psychologists define emotion regulation as children’s ability to
regulate their emotional experiences by monitoring their own expressive behavior
(Carlson & Wang, 2007). These behaviors alter the experience and expression of the
child’s emotions and are carried out to “meet situational demands and achieve personal
goals” (Blandon, Calkins, Keane, & O’Brian, 2008, p. 1110). The critical time period for
development of emotion regulation is from ages 4-7, which parallels the child’s
decreased likelihood of displaying negative affect (Blandon et al., 2008). Emotion
regulation has been linked to children’s effective stress coping, language development,
cognitive ability, academic achievement, social competence, adjustment, introversion,
and sympathy (Blandon et al., 2008; Carlson & Wang, 2007; Fox, 1994; Southam-Gerow
& Kendall, 2002). Children with deficits in emotion regulation tend to have more
behavioral problems and problems interacting with peers (Blandon et al., 2008). Parents’
behavior has been identified as a “key predictor” of children’s emotion regulation
(Piotrowski et al., 2013).
Caregiver and parental influences, such as attachment and parenting style, are
important mechanisms by which children develop emotion regulation (Blandon et al.,
2008; Piotrowski et al., 2013; Southam-Gerow & Kendall, 2002). Gross and Thompson
(2007) conceptualized the development of emotion regulation into five modalities:
6
situation selection, situation modification, attentional deployment, cognitive change, and
response modulation. Parental implementation of three of these modalities is cited as the
first exposure children have to emotion regulation. Parents implement situational
selection with the enforcement of daily routines and appropriate emotional demands for
their young children. This progresses to situational modification as parents aid their
children with complex goals, such as completing a difficult puzzle. These modifications
reduce frustration and with proper parental encouragement, allow children to gain
increased self-sufficiency. Parents are also credited with laying the foundation for
cognitive change, which is defined as the emotional appraisal of the situation and one’s
ability to think differently about circumstances. Cognitive change occurs in three ways.
Parents provide information about the situation’s circumstances, verbalize causes of their
child’s emotion, and dictate behavioral rules, such as “big girls do not throw temper
tantrums” (Gross & Thompson, 2007). Knowing that parents of children with pediatric
cancer encounter different, and often more extreme, emotional experiences from parents
of children without pediatric cancer and because parental influence is the initial
mechanism of emotion development, it follows that the development of emotion
regulation may be altered for children with a history of pediatric cancer.
Studying the development of emotion regulation in children with childhood
cancer could be of particular importance because parents of children who have
experienced childhood cancer are often more protective of their children than parents of
children without childhood cancer (Van Dongen-Melman & Sanders-Woudstra, 1986).
This overprotection could lead to more parental control, which has been linked to lower
levels of emotion regulation (Piotrowski et al., 2013). Parents’ behavior, emotions, and
7
attitudes towards the child’s disease, as well as the child’s own emotional experience,
could lead to children with childhood cancer having an increased risk for developing poor
emotion regulation strategies.
The Development of Executive Functioning
Linked with emotion regulation is executive functioning, which incorporates
higher order, cognitive self-regulatory processes that facilitate the monitoring and control
of thought and action (Carlson, 2005). Specifically, executive function is “adaptive, goal
directed behavior that enables individuals to override more automatic or established
thoughts and responses” (Garon, Bryson, & Smith, 2008, p. 31). The development of
executive functioning allows children to solve novel problems (Garon et al., 2008; Zelazo
& Frye, 1998). Increased executive functioning abilities have been associated with
decreased internalizing and externalizing behavior, as reported by parents and teachers
over a 2 year period during early elementary school (Riggs, Blair, & Greenberg, 2003).
The basis for more complex executive functioning, including the earliest forms of
response inhibition, develops during the first year of life (Garon et al., 2008). The
preschool period (ages 3-5) is a significant developmental period for executive
functioning, as children gradually gain the more complex cognitive skills required to
successfully complete executive functioning tasks (Carlson, 2005; Garon et al., 2008).
Some executive functioning tasks are still too complex for 5 and 6 year olds (Carlson,
2005). This suggests that executive functioning is still developing into the early school
years (Garon et al., 2008). Executive functioning predicts problem solving abilities,
working memory capabilities, social competencies, inhibitory control, and overall self-
regulation (Carlson, 2005; Carlson & Wang, 2007). Deficits in the development of
8
executive functioning have been associated with problems in planning, organization, and
social skills. People with deficits in executive functioning have difficulty focusing on
what is important. Additionally, poor executive functioning increases the difficulty by
which an individual is able to monitor his/her own behavior. Potentially due to some of
these difficulties, an association between people with ADHD and executive functioning
deficits has been found (Clark, Prior, & Kinsella, 2002).
The development of executive functioning begins in infancy. By preschool, core
components of executive functioning are developing. These executive functioning
building blocks are the initial cognitive processes needed to develop higher order
cognitive processes throughout childhood and into adulthood (Garon et al., 2008).
Children prepare for more goal directed behavior through increases in their ability to
focus on relevant information and dismiss irrelevant information. Once infants are able
to control their attention instead of simply looking at a stimulus because of its novelty,
infants can begin to develop the flexibility needed to shift their attention in line with the
demands of a task and the infant’s internal goals. Between 4 and 6 months, infants
develop the ability to shift attention between two stimuli (Garon et al., 2008). The next
important step in executive functioning development is the ability for children to inhibit
automatic responses. Response inhibition allows children to apply a rule to their
behavior. Earliest response suppression, where a child stops an activity they find
enjoyable at the request of their caregiver, occurs during the latter half of the child’s first
year of life. The child’s ability to stop a behavior after hearing the caregiver’s command
of “no” or “don’t” increases with age (Garon et al., 2008). Response inhibition has been
shown to increase from 40% of the time for 8 month olds to 90% in 33 month olds
9
(Kochanska, 2002; Kochanska et al., 1998). As children move from infancy, through
toddlerhood, and into the preschool years, their ability to inhibit automatic responses
gradually increases. The last aspect of executive functioning to develop is the ability to
regulate their own behavior using mental representations (Garon et al., 2008). This
continues to be challenging as children move from preschool into early elementary school
(Carlson, 2005).
Because of the central role that executive functioning plays in cognitive
development, it would be important to examine how it relates to emotion regulation in
children coping with pediatric cancer. In healthy populations, correlations between the
development of executive functioning and emotional regulation have been found and
even go as far as to suggest that the development of emotion regulation is tied to the
child’s development of executive functioning (Rueda, Posner, & Rothbart, 2005).
Changes in executive functioning in children with a history of pediatric cancer
may stem from intrathecal chemotherapy and irradiation therapy, staples in treatment for
leukemia and brain tumors (Campbell et al., 2009; Carey et al., 2008; Lesnik et al., 1998).
A subset of children who receive this type of treatment experience reduced cortical white
matter volume, particularly in the right prefrontal cortex (Campbell et al., 2009; Carey et
al., 2008). Some facets of executive functioning, particularly working memory, have
been shown to differ in older children (10-20 years of age) with a history of pediatric
cancer (Campbell, Scaduto, Van Slyke, Niarhos, Whitlock, & Compas, 2009). Despite
significant differences between the children with a history of pediatric cancer and the
control group, both group means were within the average range of scores. This indicates
that even though children with a history of pediatric cancer may have lower executive
10
functioning as it relates to working memory, their working memory ability is still intact
(Campbell et al., 2009). These studies were conducted on older children, most of who
were well off therapy. No studies could be identified that compared younger children
with a history of pediatric cancer to a control group on earlier and more basic
developments of executive functioning.
The Development of Identifying Intentionality
Related to the development of executive functioning is the social cognitive ability
to understand others’ intentions, beliefs, and desires, known as theory of mind (Garfield,
Peterson, & Perry, 2001). Children evaluate others based on their own understanding of
criteria they see as relevant (Berndt & Berndt, 1975). A person’s motive becomes a
relevant criterion for children when evaluating others during their early school years as
they develop a sense of other people’s intentionality (Berndt & Berndt, 1975). Goal
directed behavior that satisfies an individual’s desire can be called intentional actions.
Identifying intentionality is one’s ability to discern whether an actor performed an action
purposefully or by accident. Individual’s with the ability to identify the intentions of
others can examine identical actions by two different people, and from each person’s
point of view, differentiate the acts differently as either intended or accidental (Wellman
& Phillips, 2001). As children’s cognitive abilities and social understanding increase,
they are better able to separate the consequences of another’s behavior from their
intentions (Piaget, 1932). The ability to identify other’s intentions allows children to
move beyond a system of right and wrong based solely on the consequences of another’s
actions. However, this process develops slowing, beginning at a very early age. By the
time children reach 3 years of age, they have a rudimentary understanding of the mind’s
11
causal power for individual’s actions (Moses, 2001). Still, 3-year-olds have very little
insight into the concept of intention due to their inability to construct a meta-
representational understanding that another’s belief differs from their own point of view
(Astington, 2001; Moses, 2001). At ages 5 and 6, children still tend to judge outcomes as
good or bad based on consequences, with little regard for other’s intention (Piaget, 1932).
Young children fully develop a sense of other people’s intentionality during their early
school years (Berndt & Berndt, 1975). Still there are some situations in which children
younger than early-school-age are able to account for the intentions of others in a given
situation. Successful development of the ability to identify the intentions of others aids in
the more complex development of social cognition (Malle, Moses, Baldwin, 2001). The
development of intentionality includes the development of smaller domains such as the
beliefs, desires, and awareness of other people. The development of the ability to
identify other’s intentions is not simply an analytical assessment of another’s mental state,
but includes affective and moral responses to both the person’s intentions and actions
produced as a result of their intentions (Malle et al., 2001). Without the fully developed
ability to identify the intentions of others, moral judgments of other’s actions could be
negatively impacted (Malle et al., 2001). This has the potential to create strain on
interpersonal relationships and have lasting consequences throughout the lifespan.
The key to the development of intentionality is the child’s ability to differentiate
between intentions and desires. Although children as young as one year of age may be
able to detect intentions, children younger than three are incapable of distinguishing
intentions from desires. To successfully develop the ability to understand other’s
intentions, infants must first develop a “like me” analogy that relates the infant’s actions
12
with the actions of others (Malle et al., 2001; Meltzoff & Brooks, 2001). As the infant
begins to control their own behavior in a goal directed manner, they infer others’ goals
from observed actions (Malle et al., 2001). This progresses during the preschool years,
where children develop more mature ideas about the motivational states behind intentions.
However, preschool children still struggle understanding that another person’s beliefs
constrain their actions (Malle et al., 2001; Moses, 2001). This ability successfully
develops with the child’s theory of mind, around age 4 (Mueller, Lieberman-Finestone,
Carpendale, Hammond, & Bibok, 2012). Even after gaining an understanding that a
person’s actions are driven by their beliefs, it is not until 5 or 6 years of age that children
reliably distinguish intention and desire, understanding that the outcome of an action may
not be what the actor would like (Astington, 2001; Malle et al., 2001). Fully developing
a complex understanding of identifying intentionality is a gradual process, which can be
deemed complete when a child understands that people’s beliefs and intentions are but a
mental representation that mediates their actions (Perner, 1991 cited in Malle et al., 2001).
For children with cancer, understanding the intentions of others, particularly those
helping them deal with cancer, would be vitally important. It may be that the experience
of childhood cancer accelerates the development of understanding others’ intentionality.
Some pediatric cancer treatments have significant side effects, making children feel
worse after treatment than before. In spite of feeling worse in the short term, it could be
the case that children come to understand that medical professionals’ and parents’ efforts
are intended to make them better. No prior research examining pediatric cancer patients’
ability to identify the intentions of their caregivers could be identified. However,
healthcare teams make a great effort to explain to each child the nature of the disease and
13
the treatment for it in an understandable way. Many major healthcare centers around the
United States employ Child Life Specialists. Facilitating communication between
healthcare professionals, parents, and the child is one of Child Life’s main goals
(www.childlife.org). It follows that having trained specialists facilitate conversations
about treatment could help children with pediatric cancer separate the doctor’s intentions
from treatment side effects. It would be important to see if children with pediatric cancer
are able to decipher the intentions of others at an earlier age than children without a
cancer diagnosis.
Impact of Pediatric Cancer on Developmental Processes
There has long been a call for investigations exploring the developmental impact
of pediatric cancer (Pai et al., 2007; Van Dongen-Melman & Saunders-Woudstra, 1986).
In reference to this topic, two opposing outcomes for children with a history of pediatric
cancer were theorized: either developmental processes would be unaffected by the
disease or the developmental process would in some way be altered, leading to atypical
development (Susman, Hollenbeck, Stope, Hersh, Levine, & Pizzo, 1980 cited in Van
Dongen-Melman & Sanders-Woudstra, 1896). Despite these suggestions, the
developmental consequences of pediatric cancer remain a relatively unexplored area of
psychological research.
This research question is even more important today, as survival, not death, is the
more prevalent outcome for a child diagnosed with pediatric cancer (Armenian et al.,
2013; www.stjude.org). It would be important to determine potential long term
developmental consequences of the experience of childhood cancer. Identifying potential
difficulties for this population could be a first step that may lead to interventions to
14
minimize residual developmental effects resulting from the child’s disease experience.
This, in turn, could help practitioners to better understand and psychologically assist the
children and families under their care. To begin working toward those goals, this study
specifically aimed to:
1. Identify potential developmental differences in terms of emotion
regulation, executive functioning, and understanding of intentionality
between children who have experienced childhood cancer and those who
have not experienced a life threatening illnesses.
2. Examine parenting differences in terms of emotional expressiveness,
parent protection, and perception of child vulnerability between those who
are rearing a chronically ill child and parents rearing a healthy child.
3. Identify possible parental influences on children’s executive functioning,
emotion regulation, and understanding of intentionality, regardless of
illness history.
4. Examine whether parental influences on children’s executive functioning,
emotion regulation, and understanding of intentionality differ between
families with and without pediatric cancer experience.
It is hypothesized that…
1. In regards to the child measures…
A. Children with a history of cancer will have significantly lower
cognitive ability than children without a history of pediatric cancer.
15
B. Children who have experienced pediatric cancer will have
significantly lower levels of emotion regulation and executive
functioning than children without a history of pediatric cancer.
C. Children with a history of pediatric cancer will have a significantly
higher level of understanding of other’s intentions than children
who have not experienced childhood cancer.
2. In regards to parent measures…
A. Families with a child with a history of pediatric cancer will express
significantly more emotions, both positive and negative, than
families with a healthy child.
B. Parents will encourage more emotion expression for children with
pediatric cancer but will be less willing to show emotion,
particularly negative emotion, to their child compared to parents of
children without a history of pediatric cancer.
C. Parents of children with a history of pediatric cancer will report
lower levels of emotion regulation in their children than parents of
children without a history of pediatric cancer.
D. Parents of a child with pediatric cancer will perceive significantly
higher levels of child vulnerability and display more parental
protectiveness than parents of a child without a history of pediatric
cancer.
16
3. Significant correlations will be found between the child’s emotion regulation
and executive functioning and between the child’s executive functioning and
ability to identify intentionality.
4. The child’s performance on the emotion regulation tasks will be predicted by
family emotion expressiveness, parents’ perception of child vulnerability,
parental protectiveness, and scores on the child emotion regulation task.
17
METHOD
Participants
Children with (N = 39) and without (N = 40) a history of pediatric cancer were
participants in this study. Forty children with a current diagnosis or a history of pediatric
cancer and their parents were recruited through the Brenner Children’s Hospital Pediatric
Hematology and Oncology Clinic in Winston Salem, NC. Although consent was
obtained for 40 children in the pediatric oncology clinic, one child and her mother were
unable to complete the measures because of their low English language proficiency.
Neither the mother nor the child was able to complete an entire section of the study.
Therefore, no information from this family was included. The final sample consisted of
39 children (18 girls and 21 boys) with a history of pediatric cancer. The ethnicities of
the children included in the study are listed in Table 1. Children from 4.00 years to 7.98
years of age were recruited. The average age of the pediatric cancer participants was
6.13 years (SD = 1.32). The average age of the children at the time of their diagnosis was
2.97 years (SD = 1.44), ranging from 0.04 years to 6.41 years. Information about the
child’s disease and treatment history was also collected. A complete list of the cancer
diagnoses can be found in Table 2. At the time the children enrolled in the study, 12
(30.8%) were currently on treatment and 27 (69.2%) children had completed their
treatment and were considered “off therapy.” The average time since diagnosis was 3.14
years (SD = 1.54), ranging from 0.15 to 5.97 years. A breakdown of the treatment
modalities experienced by the children with a history of pediatric cancer as well as an
intensity rating of the child’s treatment (ITR) can be found in Table 3. It should be noted
that ITR scores in this study were generated based on parent reports, not from a medical
18
professional with access to the child’s medical chart. Because almost all children
diagnosed with pediatric cancer undergo surgery to place a central venous catheter (port),
it is probable that some parents who reported their child received surgery were referring
to port placement or removal, not surgery as part of the treatment regimen.
________________________________________________________________________
Table 1
Gender and Ethnicity of Hospital and School Samples
________________________________________________________________________
Hospital School
Gender
Girls 18 20
Boys 21 20
Ethnicity
Black/African American 5 2
Hispanic 7 0
White/ Caucasian 25 32
Other 2 6
Asian 0 2
White and Indian 0 1
White and Black 1 1
White and Hispanic 1 2
19
________________________________________________________________________
Table 2
Diagnoses for Children with a History of Pediatric Cancer
________________________________________________________________________
Diagnoses Frequency
Leukemias 24
Acute Lymphoblastic Leukemia 23
Acute Myeloid Leukemia 1
Lymphomas 3
Anaplastic Large Cell Lymphoma 1
Burkitt’s Lymphoma 2
CNS, Intracranial, and Intraspinal Neoplasms 2
Medulloblastoma 1
Pilocytic Astrocytoma 1
Neuroblastoma and Peripheral Nervous Cell Tumors 1
Neuroblastoma 1
Renal Tumors 5
Wilms’ Tumor 5
Hepatic Tumors 2
Hepatoblastoma 2
Malignant Bone/Soft Tissue Tumors 2
Ewing Sarcoma 1
Infantile Fibrosarcoma 1
________________________________________________________________________
20
Table 3
Treatment Modalities and Intensity for Children with a History of Pediatric Cancer
________________________________________________________________________
Modality Frequency
Chemotherapy 39
Surgery 27
Radiation 5
Bone marrow/stem cell transplant 1
Intensity of Treatment Rating (ITR-2)
Level 1: Least Intensive 4
Level 2: Moderately Intensive 22
Level 3: Very Intensive 9
Level 4: Most Intensive 4
Children and parents without a history of pediatric cancer served as the
comparison group for families with a child diagnosed with pediatric cancer. Forty
children without a history of childhood cancer and their parents were recruited from local
preschools and after school programs. Children in the preschools, as well as kindergarten
and first grade children in the after school programs, ages 4 – 8, were invited to
participate in the study. Twenty girls and 20 boys completed the study. The ethnicities
of the children without a history of pediatric cancer are listed in Table 1. The average
21
age of the children without a history of pediatric cancer enrolled on study was 5.40 (SD =
0.969) and ranged from 4.04 to 7.58 years of age.
Only children who spoke proficient English were included in the study. Children
from both the hospital and school samples were excluded from enrollment if the child had
significant intellectual disabilities or if they lacked sufficient mobility and/ or the verbal
ability needed to complete the tasks. Additionally, children who did not give verbal
assent were excluded.
In both samples, one caregiver was recruited along with the child. Sixty-five
mothers, 12 fathers, and 2 grandmothers completed the parent measures. The breakdown
of caregivers enrolled on study for families with and without a history of pediatric cancer
can be found in Table 4. The grandmothers who participated in the study did not have
primary custody of their grandchildren but each accompanied their grandchild the day the
child was recruited. Both had the power to sign consent forms and because they were
integrally involved in substantial caretaking responsibilities, it was believed that a valid
report could be obtained. All information collected from the grandmothers was included
in all analyses, with the exception of the average age of parents. Because the children’s
legal guardian was a parent(s) who was substantially younger than the grandmothers, a
more accurate assessment of the average age of the sample’s legal guardians was
obtained by excluding the two grandmothers. The age of parents of a child with a history
of pediatric cancer ranged from 23.97 to 51.97 years of age (M = 36.09, SD = 6.87). The
age of parents of a child without a history of pediatric cancer ranged from 24.95 to 58.98
(M = 38.90, SD = 7.41). The average number of children for families with and without a
history of pediatric cancer is 2.26 and 2.18 respectively. Specific family demographic
22
information, including the highest level of education completed by the participating
parent or spouse, marital status, and number of children, for both samples can be found in
Table 5. The demographic information form completed by both hospital and school
families can be seen in Appendix A.
________________________________________________________________________
Table 4
Caregivers Enrolled on Study for Hospital and School Samples
________________________________________________________________________
Hospital School
Mother 29 36
Father 08 04
Grandmother 02 00
Group comparisons for basic demographic information, including child age,
parents’ level of education, parent’s age, and total number of children were calculated to
identify variables to be used as possible covariates in subsequent analyses. Parent’s age
and total number of children did not differ significantly between the hospital and school
samples. However, the two samples significantly differed on child age, t(77) = 2.78, p =
0.007, and parents level of education, t(75) = 1.71, p < .001. The children in the school
sample were significantly younger and had parents that were significantly more educated
than the children in the hospital sample. These differences were considered as possible
covariates in subsequent analyses.
23
________________________________________________________________________
Table 5
Parent and Family Demographic Information for Hospital and School Samples
________________________________________________________________________
Hospital School
Caregiver’s Highest Level of Education
Some High School, no diploma 2 0
High School Diploma or GED 11 1
Some College Credit, no degree 7 3
Associates Degree 7 0
Bachelor’s Degree 5 16
Master’s Degree 4 12
Doctorate Degree 1 8
Caregiver’s Marital Status
Married 31 35
Divorced 3 1
Single 5 4
Number of Children
One 10 10
Two 12 14
Three 15 15
Four 1 1
Five 1 0
24
This study was approved by the Wake Forest University Institutional Review
Board as well as the Wake Forest Baptist Medical Center Institutional Review Board and
Wake Forest Baptist Health’s Comprehensive Cancer Center Protocol Review Committee.
Additional permission was obtained from school directors before children and families
were approached and enrolled on study. IRB approved consent forms for recruitment at
Brenner Children’s Hospital’s Oncology Clinic and the local schools can be found in
Appendix B and Appendix C, respectively.
Measures
Parent Questionnaires
Family Expressiveness Questionnaire (Halberstadt, 1986): The revised 20 item
questionnaire asks parents to report how often immediate family members respond with
various emotions. The 20 items include 10 positive emotion items and 10 negative
emotion items. Examples: “Thanking family members for something they have done.”
“Showing dislike for someone.” See Appendix D for the full list of items. This
questionnaire is assessed using a 9 point Likert scale (1 = not at all frequently, 9 = very
frequently). Mean positive and mean negative expressiveness scores are calculated.
Higher scores indicate higher levels of emotional expressiveness. This measure has
shown sufficient reliability. Previous studies have found both subscales of this measure
to be reliable with Cronbach’s α between 0.75 and 0.90 (Halberstadt, 1986; Ramsden &
Hubbard, 2002). This measure also displayed sufficient reliability in this study. The
positive emotion subscale Cronbach’s α = 0.841 and the negative emotion subscale
Cronbach’s α = 0.837.
25
Emotion Regulation Checklist (Shields & Cicchetti, 1997): Thirteen items from
the Emotion Regulation subscale ask parents to report their child’s ability to regulate
emotions. This subscale can be divided further with items addressing the child’s
negativity, affect, and emotion regulation. Because this study is focused on the child’s
overall ability to regulate his or her emotions, the scale’s total score is used in all
analyses. Examples of the items include: “Can say when s/he is feeling sad, angry or
mad, fearful or afraid.” “Is empathetic towards others.” See Appendix E for the
complete measure. This questionnaire is assessed using a 4-point Likert scale (i.e., rarely,
sometimes, often, and always). After reverse coding, item scores are summed with
higher scores indicating more emotion regulation. This measure yielded sufficient
reliability in past studies. Previous studies have reported Chronbach’s α between 0.85
and 0.96 (Ramsden & Hubbard, 2002; Shields & Cicchetti, 1997). Although not quite as
high as previous reports, sufficient reliability was also found for the current study
(Cronbach’s α = 0.786).
Parent Emotion Checklist (Nelson et al., 2012): This measure asks parents to
report how important it is for their children to express when they are happy, sad, angry,
and afraid. This measure is scored using a 4-point Likert scale (i.e., not important to very
important). Higher scores indicate parents feel that having their child express that
particular emotion is of increased importance.
The second part of this questionnaire asks parents to report how often they show
their child when they are happy, sad, angry, and afraid. The full measure can be found in
Appendix F. This is scored on a 4-point Likert scale (i.e., rarely to always) and higher
scores indicate increased frequency of expression of parent emotions to the child. To
26
examine differences between positive and negative emotions, the average of sad, angry,
and scared are compared to the happy score. In past studies, the authors report high
internal consistency for both African American and European American samples
(Chronbach’s α = 0.96 for both ethic groups; Nelson et al., 2012). This measure was not
specifically tested on a Hispanic sample, therefore a previous measure of internal
consistency was not available for this ethnicity. Across all ethnicities, this measure
produced sufficient reliability in the current study as well. The Cronbach’s α = 0.922 for
the child negative emotion subscale and Cronbach’s α = 0.759 for the parent negative
emotion subscale. The scale’s overall internal reliability was also sufficient, Cronbach’s
α = 0.729.
Child Health and Family Functioning Questionnaire (Thomasgard & Metz, 1999):
Nineteen items from the parent protection and child vulnerability subscales are
implemented in this study. The full measure can be found in Appendix G.
The child vulnerability subscale assesses parental perceptions of their child’s
vulnerability to illness, both severe, chronic illnesses as well as common illnesses.
Additionally, there are items related to real or feared separation or loss (e.g., “I keep my
child from participating in activities because s/he might get or become ill”). This
subscale consists of 9 items total: one “yes” or “no” item (i.e., My child currently has a
chronic medical condition) and 8 items scored on a 4-point Likert scale (i.e., rarely to
always). The “yes/no” chronic illness item is scored separately. The other 8 items are
averaged to create a total score for child vulnerability. A higher average score for these
items indicates higher perceived vulnerability.
27
The parent protection subscale was designed as an 11 item subscale that measured
the parents’ perception of child safety and autonomy. However, upon examination of the
individual items, two distinct factors measuring parent protectiveness and child
independence could be imagined. A factor analysis of the 11 items in the parent
protectiveness subscale confirmed the presence of two factors. The factor loadings for
the individual items can be found in Table 6.
This factor analysis was conducted using a promax rotation method to examine if
the factors would correlate with one another. There was not a significant correlation
between the two factors, r = 0.102. This provides more evidence that these items are
measuring two distinct constructs.
Based on the results of the factor analysis and to increase internal reliability, this
study broke the previously published parent protectiveness subscale into two distinct
subscales: independence and protectiveness. The newly created independence subscale
consists of 8 items, averaged for a total score measuring the child’s level of independence
(e.g., “My child can be trusted to do things alone”). Higher scores indicate more child
autonomy. The protectiveness subscale consisted of 4 items, averaged for a total score
measuring parent protection.(e.g., “When I am not with my child, I am worried that s/he
may get hurt or be involved in an accident). Higher scores indicate more parental
protective behaviors. The parent protection subscale and the independence subscale
were measured using a 4 point Likert scale (i.e., rarely to always).
The final item in the Child Health and Family Functioning scale, “It is difficult to
set limits on behavior,” was not previously included in a specific subscale. Therefore, it
will be assessed independently of the subscales in the current study.
28
________________________________________________________________________
Table 6
Factor Analysis of Parent Protectiveness Subscale
________________________________________________________________________
Item Factor 1 Factor 2
I leave my child with anyone outside my family. .205 .594
My child deals with separation from me. -.006 .151
When I am not with my child, I am worried -.048 .824
that s/he may get hurt or be involved
in an accident.
I allow my child to choose his/her own clothing. .591 -.118
My child can choose the proper foods. .524 .087
My child can get along without me .562 -.211
My child can be trusted to do things alone. .775 .044
My child can bathe without help. .697 .040
My child is encouraged to express his/her own .645 .194
opinion, even when I disagree.
My child is allowed to refuse to eat certain foods. .353 -.205
I worry about my child’s safety when I am away -.067 .835
overnight.
My child can use the toilet without assistance. .393 .042
This questionnaire was originally given as an interview, which correctly predicted
parental perception of child vulnerability 77% of the time and parental protection 76% of
the time (Thomasgard & Metz, 1999). In the current study, this questionnaire did reveal
29
sufficient reliability for the child vulnerability and newly conceptualized independence
subscale, Cronbach’s α = 0.812 and 0.713, respectively. Reliability for the parent
protectiveness subscale was not sufficient, Cronbach’s α = 0.525. To increase reliability,
one item (i.e., “My child deals with separation from me”) was dropped from the subscale,
increasing reliability to α = 0.656. Not only did dropping this item increase reliability,
but the dropped item was the only item in the parent protectiveness subscale asking about
the child, instead of the parent, providing reason to examine this item separately.
Intensity of Treatment Rating (ITR-2; Werba et al., 2007): Parents of children
with a history of childhood cancer were asked questions related to their child’s diagnosis
and treatment so the ITR-2 could be completed. Questions asked included diagnosis and
stage, whether or not the child was on treatment, whether or not the child had
experienced a relapse, and which treatment modalities had been used to combat disease
(e.g., chemotherapy, surgery, radiation, and transplant). The complete ITR measure can
be found in Appendix H. The experimenter evaluated the diagnosis and treatment
modalities on the ITR-2, which were then assigned a score between 1 and 4 for each child.
Higher scores indicate more intense treatment.
The authors of the measure report high inter-rater reliability for this scale (r =
0.87). Content validity is established, as ratings from teams of pediatric oncologists and
nurse practitioners found a strong correlation (r = 0.95) between the scores assigned by
the ITR-2, the current treatment protocols, and outcomes for pediatric cancer.
Child Tasks
Peabody Picture Vocabulary Test (Dunn & Dunn, 1959): This task assesses
proficiency of receptive English vocabulary and is a general measure of cognitive
30
development. Children are shown pages with four drawings. The experimenter reads a
word and the child must point to the drawing that represents the word (e.g., empty, castle,
vehicle). There are 12 words in each set and the child can only move to the next set if he
or she misses fewer than 8 words in the set. Because of time constraints and to better
keep the child’s attention, the experimenter started one set above the recommended
starting point and skipped up to two sets if the child was performing well. These
alterations mean that the Peabody scores reported in this experiment may be slightly
inflated and should be interpreted as an approximation of the child’s cognitive ability.
Raw scores are calculated by subtracting the total number of errors from the
ceiling item in the last attempted set. Raw scores were then converted to a standard score,
using norms in the manual. Higher scores indicate higher cognitive ability. This is a
standard task used when measuring cognitive functioning and internal reliability is very
well established (Chronbach’s α = 0.91-0.95 for children age 4-7 for raw and
standardized scores; Dunn & Dunn, 1959).
Silly Sounds Task (Gerstadt et al., 1994): This task is similar to a Stroop task and
measures the children’s ability to suppress their prepotent response, which is an indicator
of executive function. First, five congruent trials are presented. The children are asked
to bark when they see a picture of a dog and to meow when they see a picture of a cat.
Next, 18 incongruent trials are presented. During the incongruent trials, the children are
asked to meow like a cat when shown a picture of a dog and to bark like a dog when
shown a picture of a cat. The identical pictures of a dog and a cat were used in both the
congruent and incongruent trials (Appendix I). In total, this task consisted of 23 trials
and children were given a 0 (incorrect response) or 1 (correct response) for each trial.
31
Separate total scores for the congruent and incongruent trials were calculated by adding
together the child’s correct responses for each trial type. Congruent trials display the
child’s ability to make the correct animal sounds for dogs and cats and their
understanding of the task. Higher scores on the incongruent trials indicate higher
executive functioning.
Secret Sharing Task (Bethel et al., 2011): In order to test the child’s emotion
regulation, the experimenter asked the child to keep two secrets. In both secret keeping
tasks, the experimenter first defines a secret as, “something somebody tells you that you
are not supposed to tell anyone else.” Following the definition, the experimenter reveals
one of two secrets to the child. This task is repeated twice during the experiment so that
each child is asked to keep both secrets. These secrets were counterbalanced in the two
task orders used in the experiment.
Zoo Secret: The experimenter told the child that she is afraid of lions or tigers
(depending on task order) and reminded the child not to reveal the secret.
Ribbon Secret: The experimenter told the children that there is a ribbon to give
their doctor/nurse or teacher but that they cannot tell anyone about the ribbon because it
is a surprise.
After each secret is explained to the child, a talking, computerized robot is
presented on the computer and he asks five questions. Each question more explicitly asks
the child to reveal the secret (e.g., “What kind of animals do you think she might be
afraid of?”, “What kind of prize could we give?”). The complete script for this task can
be found in Appendix J. The number of questions required for the child to reveal the
secret, or if the child kept the secret throughout the task, is recorded from 1 (i.e., revealed
32
secret after first question) to 6 (i.e., kept secret throughout the task). This task measures
the child’s ability to regulate emotions. Higher scores indicate better emotion regulation.
The creators of this task established validity for using a robot to prompt the child
instead of a second adult. Their research indicated that children responded to the robot
and to a second adult in a similar fashion by reporting a “moderate, positive correlation”
between the children’s responses to the robot and the second adult (r = 0.327, p = 0.042;
Bethel et al., 2011, p. 5). The authors also reported no difference between the level of
prompting required for children to reveal the secret to the robot or adult, F(1, 13) = 0.335,
p = 0.57); (Bethel et al., 2011).
Identifying Intentionality (Baird & Moses, 2001; Pellizzoni et al., 2009): The
child listens to five short stories about children who intentionally or unintentionally cause
their friends to feel happy, sad, angry, or scared. These stories are accompanied by
sequential cartoon images depicting the action of the story. Two sets of stories were
created: one with girl characters and one with boy characters. The girls heard stories
about the girls and the boys heard stories about the boys. The stories and all cartoon
images can be found in Appendix K.
During the task, children are asked to identify whether the antagonist meant to
make their friend feel happy, sad, angry, or scared and whether or not the friend believes
that the antagonist meant to make him or her feel happy, sad, angry, or scared. There was
one story for each of the negative emotions (sad, angry, and scared) and two stories for
happy. This task measures the child’s ability to identify other’s intentions. Each child
receives two scores on this task.
33
The first score is a total knowledge score. The knowledge questions include what
object the antagonist has with them, whether or not the antagonist and their friend likes or
dislikes the object, how the friend would feel upon seeing the object, and whether or not
the antagonist knows how the friend will react to the object. Each child is asked a total of
24 knowledge questions. However, very few children were able to correctly identify the
drawing of the hamster. Consequently, that question was not included in the total
knowledge score. Therefore, children were assigned a total knowledge score out of 23,
with higher scores indicating greater knowledge of the stories’ plotlines.
Children also receive a total score for the test questions. Children earned a 0, 1,
or 2 points for each pair of test questions (i.e., Did the antagonist act on purpose? Did the
antagonist act on accident?). They received a score of 0 if they answered both questions
in the pair incorrectly, a score of 1 if they answered one question in the pair correctly,
and a score of 2 if they answered both questions in the pair correctly. Additionally,
children who had a consistent response pattern (i.e., all yes or all no responses for the test
questions in a particular story) were given a score of 0. Because there are 2 pairs of test
questions for each story, the child can earn a total test score of 20 points (4 points per
story for five stories). Higher scores indicate better understanding of intentionality.
In summary, the hypotheses for the current study and the measures that will be
used to test the hypotheses are included in Table 7.
Procedure:
Children with a history of cancer and their parents were invited to participate in
the research study during scheduled medical appointments. If the parent and child agreed
34
________________________________________________________________________
Table 7
Summary Table of Hypotheses and Measures
________________________________________________________________________
Hypotheses Measure
Children with a history of pediatric cancer
will…
1. have lower cognitive ability
2. lower levels of emotion regulation
3. lower levels of executive functioning
4. better understanding of other’s
intentions
1. Peabody Picture Vocabulary Test
2. Zoo and Ribbon Secret Sharing Tasks
3. Silly Sounds Task
4. Identifying Intentionality Stories
Families with a child with a history of
pediatric cancer will…
1. express significantly more emotions,
both positive and negative
2. Encourage more emotion expression
for children
3. Be less willing to show emotion,
particularly negative emotion
4. report lower levels of emotion
regulation in their children
5. perceive significantly higher levels of
child vulnerability
6. display more parental protectiveness
without a history
1. Family Expressiveness Questionnaire
2. Parent Emotion Checklist
3. Parent Emotion Checklist
4. Emotion Regulation Checklist
5. Child Health & Family Functioning
Questionnaire
6. Child Health & Family Functioning
Questionnaire
35
to participate, the researcher thoroughly explained the experiment. Both parent and child
were given an opportunity to ask questions before obtaining written consent. If both
parents were present at the medical appointment, the researcher allowed the family to
decide which parent would participate. Once consent was obtained, parents were given
the packet of questionnaires and asked to complete the measures while the researcher
interviewed the child. The majority of parents completed the questionnaires quietly
while in the same room as the researcher and the child.
A separate consent letter and parent questionnaires were sent home with local
school children without a history of pediatric cancer. The parent questionnaire packet for
the parents of the school children was identical to the parent questionnaire packet
completed by parents of children with pediatric cancer with one exception. The parents
at the schools were not asked to complete an ITR-2, as it did not apply to their child.
Parents who were interested in participating in the study with their child were asked to
sign the consent form and complete the questionnaires before returning the form to the
child’s teacher. The researchers’ contact information was provided should any parents
have questions about the experiment. Children whose parents returned consent forms
were pulled from their classrooms during the school day or during their after school
program to complete the experiment.
All parents, both at the hospital and at the schools, were explicitly told that their
child may participate in the study even if they chose not to complete the parent
questionnaires. However, all but one parent at least partially completed the
questionnaires. Ninety five percent or 75 of the parents completed all measures. Of the
parents that did not complete all measures, 3 were from the hospital sample and 1 was
36
from the school sample. Two of the parents did not complete the measures because of
difficulty with the English language, 1 parent missed the last page, and 1 parent cited a
lack of time to complete the measures. Parents completed the questionnaires in
approximately 10-15 minutes.
Once parental consent was obtained, the experiment was briefly introduced to the
child and the researcher asked for verbal assent. If the child gave assent, the researcher
proceeded with the experiment. There were identical procedures for children with and
without a history of pediatric cancer, with one exception. In one of the Secret Sharing
tasks, the children were asked not to reveal that the researcher had a ribbon for either a
doctor or nurse (i.e., children with a history of cancer) or their teacher (i.e., children
without a history of pediatric cancer).
The children’s tasks were presented in two orders to reduce order effects and to
account for fatigue. An almost equivalent number of girls and boys took form A and
form B. In both forms of the experiment, the Peabody Picture Vocabulary task was
administered first. In form A, the Peabody was followed by the Silly Sounds task, Zoo
Secret Sharing task, Identifying Intentionality stories, and, finally, the Ribbon Secret
Sharing task. In form B, the Peabody was followed by the Identifying Intentionality
stories, the Ribbon Secret Sharing task, the Silly Sounds task, and the Zoo Secret Sharing
task. All tasks, excluding the Peabody, were presented via a laptop computer to make the
stimuli more appealing and attention catching. The child’s responses were recorded by
the experimenter. The total experiment took approximately 20-30 minutes to complete.
At the conclusion of the experiment, the researcher thanked the child for participating and
the child was asked to choose a small gift. Children with a history of pediatric cancer
37
were left in the care of their parents, and children without a history of pediatric cancer
were returned to their classrooms.
38
RESULTS
The total scores for each measure were calculated according to the procedures
described in the method section. As mentioned, with respect to the basic demographic
variables, the sample of children with a history of pediatric cancer and the sample of
healthy children significantly differed on child age, t(77) = 2.78, p = 0.007, and parent
level of education, t(75) = 1.71, p < .001, the measure of family SES. Subsequent
analyses controlled for these variables if the possible covariates were significantly
correlated with the dependent variable. This was done to remove variance related to
demographic variables from the target analysis. There were no differences for any of the
measures based on the child’s gender; therefore, all further analyses did not differentiate
between boys and girls. Child’s age did produce significant differences in executive
functioning and identifying intentionality, which is to be expected since these abilities
continue to develop during this age period.
The hospital sample was examined for any possible differences based on the
children’s differing disease history. There were no significant differences on any of the
child tasks based on ITR scores. Because very few of the children with a history of
pediatric cancer experienced radiation therapy or a transplant and all of the children were
given chemotherapy, no separate analyses examining potential effects of these treatment
modalities could be performed. Additionally, it was difficult to distinguish children who
received surgery as part of their treatment regimen and children who only underwent
surgery only for port placement. As a result, no additional analyses were conducted
examining potential effects of surgery as a treatment modality. Considerations were
given to conducting analyses of individual diagnoses. To conserve power, this was not
39
done because of the relatively small sample size. Therefore, all analyses examined the
effect of a history of pediatric cancer for the entire sample.
The means and standard deviations for the parent measures, calculated separately
for the hospital and school samples, can be found in Table 8. All data collected were
used in these calculations with the exception of parent age. The means and standard
deviations for child tasks, calculated separately for the hospital and school samples, can
be found in Table 9. All subsequent analyses in this study were run using two tailed tests
to provide more confidence in significant findings.
In addition to basic descriptive analyses, correlations were calculated between all
variables. Complete tables of correlations can be found in the appendix. Appendix H
displays all correlations across both conditions. Appendix I displays correlations for
children with a history of pediatric cancer and Appendix J displays correlations for
children without a history of pediatric cancer.
Although there were not significant correlations between child emotion regulation
and executive functioning or child executive functioning and identifying intentionality for
both groups, as hypothesized, interesting correlations did emerge. In the school sample,
there was a significant correlation between the parent report of emotion regulation and
the task measuring executive functioning (Silly Sounds incongruent trials) (r = .40, p
= .012). This correlation did not reach significance for the hospital sample. In the school
sample, there was a significant positive correlation between the child’s cognitive ability
(standardized Peabody score) and the parent’s report of their child’s emotion regulation (r
= .36, p = .025). A significant negative correlation was found between the child’s
cognitive ability and the parent’s perception of child vulnerability (r = -.35, p = .027) and
40
parent protectiveness (r = -.48, p=.002). This pattern was not found for the hospital
sample.
________________________________________________________________________
Table 8
Means and Standard Deviations for Parent Measures: Hospital and School Samples
________________________________________________________________________
Hospital School
M SD M SD
Family Expressiveness Questionnaire
Positive 7.83 0.87 7.47 0.85
Negative 3.84 1.10 4.26 1.29
Emotion Regulation Checklist 40.43 5.21 41.13 5.29
Parent Emotion Checklist
Importance of Child Emotion Expression
Positive 3.57 0.69 3.60 0.59
Negative 3.77 0.40 3.75 0.59
Parent Emotion Expression
Positive 3.78 0.42 3.73 0.45
Negative 2.33 0.66 2.75 0.59
Child Health and Family Functioning Questionnaire
Child Vulnerability 2.08 0.55 1.35 0.19
Child Independence 2.77 0.52 2.79 0.44
Parent Protectiveness 2.66 0.79 2.04 0.57
41
________________________________________________________________________
Table 9
Means and Standard Deviations for Child Tasks: Hospital and School Samples
________________________________________________________________________
Hospital School
M SD M SD
Peabody Picture Vocabulary Test 106.62 14.42 117.05 11.18
Secret Sharing Task
Zoo Secret 4.05 1.18 3.58 1.03
Ribbon Secret 3.67 1.38 4.15 1.29
Identifying Intentionality
Knowledge Questions 20.11 3.05 20.73 2.03
Test Questions 8.77 5.42 9.58 4.48
Silly Sounds Task
Congruent Trials 4.53 0.86 4.63 0.54
Incongruent Trials 14.26 4.20 14.40 3.60
In both the hospital and school samples, almost all of the child measures were
significantly correlated with one another. (r = .32 to .59, p < .05) The exception to this
pattern was the zoo secret sharing task, which was not significantly correlated with any of
the other child measures in either the hospital or school sample. Greater emotion
regulation, as measured by the ribbon secret sharing task, is associated with greater
executive functioning (r = .37, p = .021) and greater ability to identify other’s intentions
for children with a history of pediatric cancer (r = .39, p = .015).
42
For children with a history of pediatric cancer, higher cognitive ability was
associated with older age at diagnosis (r = .32, p < .047) while greater time since
diagnosis was associated with lower cognitive ability (r = -.33, p = .047). Child
independence was positively correlated with greater parent report of emotion regulation
(r = .39, p = .019), greater importance of emotion expression for both positive (r = .46, p
= .005) and negative emotions (r = .37, p = .026), and increased parental expression of
positive emotions (r = .35, p = .037) for children with a history of pediatric cancer.
Surprisingly, this pattern was not present for the school sample.
Not surprisingly, parents who report higher child vulnerability scores for their
children also report more parent protectiveness behaviors. This association holds true for
both healthy (r = .69, p < .001) and pediatric cancer (r = .65, p < .001) samples.
Although the correlations revealed various relationships between various variables,
computing t-tests, Hotellings T2, and regression models further tested the hypotheses and
clarified the results.
Differences for Children With and Without Pediatric Cancer on Executive Function,
Emotion Regulation, and Identifying Intentionality
Peabody Picture Vocabulary Task. It was hypothesized that there would be a
difference in cognitive ability between children with and without a history of pediatric
cancer. Children with a history of cancer were believed to have lower cognitive ability
than children without a history of cancer. This hypothesis was examined by conducting
an independent samples t-test between standardized Peabody Picture Vocabulary test
scores for each sample. Because parent’s level of education, the measure of family SES,
was significantly correlated with standardized Peabody scores, parent education was used
43
as a covariate in this analysis. In keeping with the hypothesized result, there was a
significant difference between children with and without a history of cancer when
controlling for parent’s level of education, t(75) = 2.44, p = .017. Children with a history
of pediatric cancer performed significantly lower on the Peabody Picture Vocabulary task.
It is important to note that although children with a history of cancer have significantly
lower cognitive scores than children without a history of pediatric cancer, the means for
both samples of children were well within the normative range, 106.6 and 117.1
respectively. Additionally, the ranges for both samples (71-130 for cancer children and
83-135 for school children) show that there were children who had relatively low
performances and children who performed very highly in both samples. Because the
Peabody scores for the pediatric cancer children differed from the healthy children, the
standardized Peabody scores were considered as potential a covariate in subsequent
analyses examining child tasks. Again, standardized Peabody scores were used as a
covariate if it was significantly correlated with the dependent variable.
Secret Keeping Tasks. The second hypothesis predicted that children who have
experienced pediatric cancer would have significantly lower levels of emotion regulation.
Differences in emotion regulation between children with and without a history of
pediatric cancer were examined by conducting two independent sample t-tests between
the total scores for the ribbon and zoo secret sharing tasks. There was a significant effect
of cancer history on child performance for the zoo secret sharing task, t(73) = 2.00, p
= .050. Although there was a significant difference between children with and without a
history of pediatric cancer, it was in the opposite direction than hypothesized. Children
with a history of pediatric cancer had significantly higher emotion regulation. Unlike the
44
zoo secret keeping results, there was not a significant effect of cancer history on child
performance for the ribbon secret sharing task, t(77) = -1.61, p = .112. These results did
not reach significance, but interestingly, the means for the ribbon secret sharing task are
in the opposite direction of the zoo secret sharing task. Although children with a history
of pediatric cancer performed better on the zoo secret sharing task, they performed worse
on the ribbon secret sharing task, albeit not significantly worse.
An analysis of variance was conducted to examine the possibility that the opposite
results for each task were the result of a significant interaction. A one-way between
subjects ANOVA was conducted to compare the effect of a history of pediatric cancer on
emotion regulation for performance on the zoo and ribbon secret sharing tasks. There is
no significant main effect for the zoo secret sharing task, F(1, 74) = 0.595, p = .443.
There is no significant main effect for the ribbon secret sharing task, F(1, 74) = .314, p
= .577. Additionally, there is not a significant interaction effect for the zoo and ribbon
secret sharing tasks, F(1, 74) = 0.003, p = .956. The opposite results for the zoo and
secret sharing tasks are not the result of a significant interaction between the two
measures of emotion regulation.
Silly Sounds Task. It was hypothesized that children with a history of pediatric
cancer would have significantly lower levels of executive functioning than children
without a history of cancer. Potential differences in executive functioning were
examined using the congruent and incongruent trials of the Silly Sounds task. First,
potential differences in task understanding were analyzed for children with and without a
history of pediatric cancer using the congruent trials of the Silly Sounds task. An
independent samples t-test revealed that when controlling for child’s age and
45
standardized Peabody scores, there was no significant difference between children with
and without a history of pediatric cancer, t(73) = 0.667, p = .507. Both samples of
children preformed equally well on the congruent trials of the Silly Sounds task,
indicating no difference in their understanding of the directions or in their ability to make
the correct animal sounds. The means for both samples (Table 9) indicate that all
children performed very well on the congruent trials of the Silly Sounds task, on average,
missing less than 1 trial.
To examine differences in executive functioning, a subsequent independent
samples t-test was conducted comparing total scores for the incongruent trials of the Silly
Sounds task for children with and without a history of cancer while controlling for child’s
age and standardized Peabody scores. Contrary to hypothesized results, there was not a
significant effect of cancer history on child performance for this measure of executive
functioning, t(73) = 0.657, p = .513. Children with and without a history of pediatric
cancer have equivalent executive functioning abilities as it relates to suppressing a
prepotent response. Means from both samples (Table 9) indicate that children in both
samples performed well on this task, on average, missing fewer than 4 trials.
Identifying Intentionality Stories. Children with a history of cancer were
hypothesized to have a significantly higher understanding of other’s intentions than
children without a history of pediatric cancer. This was analyzed by examining total
knowledge and test question scores for the Identifying Intentionality task. First,
potential differences in basic story comprehension were assessed for children with and
without a history of pediatric cancer using performance on the knowledge questions. An
independent samples t-test revealed that when controlling for child’s age, parent
46
education, and standardized Peabody scores, there was no significant difference between
children with and without a history of pediatric cancer on the total knowledge score, t(74)
= 0.078, p = .938. Both samples of children performed equally well on the knowledge
questions of the Identifying Intentionality task, indicating an equivalent understanding of
the plotlines. The mean knowledge scores for both samples was very high, indicating
that all of the children were able to comprehend and follow the action of the story, on
average, missing fewer than 3 knowledge questions throughout the entire task (Table 9).
To examine differences in the ability to identify other’s intentions, a subsequent
independent samples t-test was run using total test pair scores for children with and
without a history of pediatric cancer. There was a significant effect of cancer history on
the children’s understanding of other’s intentions when controlling for child’s age, t(74)
= 2.20, p = .031. Contrary to the hypothesized results, children with a history of cancer
had a significantly lower ability to identify other’s intentions. Although children without
a history of pediatric cancer performed significantly better than children with a history of
pediatric cancer, on average, children in both samples correctly identified the intentions
of others less than 50% of the time (Table 9).
Differences Between Family Expressiveness, Parent Protectiveness, Child Health
and Family Functioning, Report of Child Emotion Regulation, and Importance of
Emotional Expression
Child Health and Family Functioning Questionnaire. Parents of a child with
pediatric cancer were hypothesized to perceive significantly higher levels of child
vulnerability and parent protectiveness and less child independence than parents of a
child without a history of pediatric cancer. Differences in parents’ perception of child
47
vulnerability, child protectiveness, and child independence for children with and without
a history of pediatric cancer were also assessed using independent samples t-tests. When
controlling for the child’s age and parent’s level of education, there was an effect of a
history of cancer on the parent’s perception of their child’s vulnerability, t(72) = 5.51, p
< .001. Parents of children with a history of pediatric cancer perceived their children to
be more medically vulnerable than parents of children without a history of pediatric
cancer. It should be noted that even though there is a significant effect of the child’s
cancer history on parent report of child vulnerability, the means for samples are toward
the lower end of the scale. This indicates that, on average, parents feel their child is
“rarely” to “sometimes” vulnerable (Table 8).
In line with hypothesized results, scores from the parents of children with and
without a history of pediatric cancer revealed that there was an effect of cancer history on
the parent’s protectiveness of their child, t(72) = 2.27, p = .026. This analysis was
conducted while controlling for the parent’s level of education. Parents of children with
a history of pediatric cancer were more protective of their child than parents of children
without a history of pediatric cancer. Means from the samples indicate that, on average,
parents of children with a history of pediatric cancer “often” exhibit protective behaviors
while parents of children without a history of pediatric cancer, on average, exhibit
protective behaviors “sometimes” (Table 8).
Contrary to hypothesized results, there was no difference between the child’s
level of independence for children with and without a history of pediatric cancer while
controlling for the child’s age, t(72) = 0.451, p = .654. Both groups of parents allowed
their child to make age appropriate decisions, gave their child equivalent control over
48
small choices, and believed their child was competent enough to carry out basic functions
without parental help.
Finally, differences between children with and without a history of cancer for the
last three items on the child health and family functioning questionnaire were examined.
An independent samples t-test controlling for child’s age and parent’s level of education
revealed that parents of children with a history of cancer significantly more often state
their child has a chronic illness, t(71) = 2.99, p = .004. There was no difference in how
difficult it is for parents to set limits on behavior, t(73) = 0.94, p = .348. The average
rating for this indicates that parents only “rarely” to “sometimes” have difficulty setting
limits on behaviors for children with a history of pediatric cancer (M = 1.65, SD = 0.716)
and children without a history of pediatric cancer (M = 1.50, SD = 0.647). Additionally,
there was no significant difference for how well the child deals with separation from their
parent, t(72) = 1.71, p = .092, while controlling for parent’s level of education. However,
these results can be qualified as marginally significant. Children with a history of
pediatric cancer “rarely” deal with separation from their parent (M = 1.22, SD = 1.20)
while children without a history of pediatric cancer “sometimes” dealt with separation
from their parent (M = 1.92, SD = 1.04).
Emotion Regulation Checklist. Parents of children with a history of pediatric
cancer were hypothesized to report lower levels of emotion regulation in their children
than parents of children without a history of pediatric cancer. This was analyzed through
an independent samples t-test. Contrary to hypothesized results, there was not a
significant difference between parent reported levels of emotion regulation for children
with and without a history of pediatric cancer, t(71) = 0.578, p = .565. There is not a
49
significant effect of cancer history on the level of parent reported emotion regulation.
Means from both samples indicate that, overall, parents report their children are often
able to regulate their emotions (Table 8).
Family Emotion Expression. It was hypothesized that families with a child with a
history of pediatric cancer would express significantly more emotions, both positive and
negative, than families with a healthy child. This was analyzed using a Hotelling’s T2
test for the expressions of positive and negative emotions, measured using the Family
Expressiveness Questionnaire. Contrary to hypothesized results, there was not a
significant overall effect of the child’s cancer history on the family’s emotion
expressiveness, Wilks’ Lambda, F = 2.51, p = .088, for positive, F(1, 76) = 3.38, p =.070,
or negative emotions, F(1, 76) = 2.28, p =.135. However, results for the overall effect of
the child’s cancer history on family emotion expressiveness and positive emotion
expression within the family are trending toward significance. This difference is not
large enough to reach significance. Families of children with and without a history of
pediatric cancer express equivalent levels of positive and negative emotions. Overall,
families in both samples reported frequently expressing positive emotions and must less
frequently expressing negative emotions (Table 8).
Parent Emotion Checklist. Parent measures also looked at emotion expression
separately for the children and parents. It was hypothesized that parents would encourage
more emotion expression, both positive and negative, for children with a history of
pediatric cancer. To examine this hypothesis, we conducted a Hotelling’s T2 to examine
differences between parental importance of their child’s emotion expression for positive
(happy) and negative (sad, angry, and scared) emotions. There was not a significant
50
overall effect of the child’s cancer history on the importance parents place on their child’s
emotion expression, Wilks’ Lambda, F = .296, p = .745. Additionally, there was no
effect for positive, F(1, 76) = 0.023, p = .881 or negative emotion, F(1, 76) = 0.259, p
= .612 expression. Parents of children with and without a history of pediatric cancer
place equivalent importance on their child’s emotion expression. Parents in both
samples believed it was very important for their child to express whatever emotion they
were experiencing (Table 8).
It was also hypothesized that parents of children with pediatric cancer would be
less willing to express emotions in front of their children. This effect was hypothesized
to be stronger for negative emotions than positive emotions. To examine this hypothesis,
a Hotelling’s T2 was conducted. There was an overall effect of the child’s disease history
when controlling for parent level of education, Wilks’ Lambda, F = 4.99, p = .009.
Contrary to hypothesized results, there was no difference in the amount of positive
emotions parents expressed in front of their children, F(1, 76) = 0.430, p = .514. All
parents equivalently expressed positive emotions very frequently in front of their children.
However, this was not the case for negative emotions. In line with hypothesized results,
parents of children with a history of pediatric cancer were less likely to express negative
emotions in front of their children, F(1, 76) = 8.55, p = .005. Parents of a child with a
history of pediatric cancer were less likely to express sadness, anger, or fear in the
presence of their child. Taken together, there is evidence that there was a significant
effect of the child’s cancer history on the parent’s emotional expression in front of their
child. However, this only holds true for negative emotions.
51
________________________________________________________________________
Table 10
Summary Table of Hypotheses, Measures, and Results
________________________________________________________________________
Hypotheses Measure Results
Children with pediatric cancer
will…
1. have lower cognitive
ability
2. lower levels of emotion
regulation
3. lower levels of executive
functioning
4. better understanding of
other’s intentions
1. Peabody Picture
Vocabulary Test
2. Zoo and Ribbon Secret
Sharing Tasks
3. Silly Sounds Task
4. Identifying Intentionality
Stories
1. Hospital < School
2. Zoo: Hosp > School
Ribbon: No sig. dif.
3. No sig. difference
4. Hospital < School
Families with a history of
pediatric cancer will…
1. express significantly more
emotions, both positive
and negative
2. Encourage more emotion
expression for children
3. less willing to show
emotion, particularly
negative emotion
4. lower levels of emotion
regulation in their children
5. perceive higher levels of
child vulnerability
6. display more parental
protectiveness
1. Family Expressiveness
Questionnaire
2. Parent Emotion Checklist
3. Parent Emotion Checklist
4. Emotion Regulation
Checklist
5. Child Health & Family
Functioning Questionnaire
6. Child Health & Family
Functioning Questionnaire
1. No sig. difference
2. No sig. difference
3. Pos: No sig differ.
Neg: Hosp < School
4. No sig. difference
5. Hospital > School
6. Hospital > School
52
Performance on Child Tasks for Emotion Regulation Predicted from Family
Emotion Expressiveness, Parental Importance of Child Emotion Expression,
Parental Frequency of Emotion Expression, and Parental Protectiveness
A hierarchical regression analysis predicting both groups of children’s scores on
each of the emotion regulation tasks (ribbon and zoo) was calculated. Step one included
demographic variables (child’s age and parent’s education) and Peabody Picture
Vocabulary Test scores. Step two included parent measure predictors, including a
composite variable of family emotionality (comprised of family expressiveness, parental
importance of child emotion expression, and parental expression of emotions), and parent
protectiveness. To verify the creation of a composite family emotionality variable,
correlations between all considered variables were run and are reported in Table 11. Step
three included the child’s scores on the executive functioning task (Silly Sounds
Incongruent trials).
The following variables were considered for the composite family emotionality
variable: family expressiveness of positive emotions (FEx Positive); family
expressiveness of negative emotions (FEx Negative); how important it is for the child to
show positive emotions (PEC Child Emot. Positive); how important it is for the child to
show negative emotions (PEC Emot. Negative); how often parents express positive
emotions in front of their children (PEC Parent Emot. Positive); how often parents
express negative emotions in front of their children (PEC Parent Emot. Negative). This
was done to conserve the power of the hierarchical regression analyses.
53
________________________________________________________________________
Table 11
Correlations Between Variables Considered for the Family Emotionality Variable
________________________________________________________________________
1 2 3 4 5 6
1. FEx Positive -- -.148 .312** .302** .359** .088
2. FEx Negative -- -.014 .011 -.274** .196
3. PEC Child Emot. Positive -- .610** .196 .220
4. PEC Child Emot. Negative -- .167 .114
5. PEC Parent Emot. Positive -- .160
6. PEC Parent Emot. Negative --
Because parental expression of negative emotions did not correlate with any of
the other variables, it was removed from the composite variable and run in a separate
regression. The sum of the FEx positive, the reverse score of FEx negative, PEC positive
child emotions, PEC negative child emotions, and PEC positive parent emotions
variables were used as the composite family emotionality variable. Four hierarchical
regressions were conducted: predicting zoo secret performance from family emotionality
composite variable, predicting ribbon secret performance from family emotionality
composite variable, predicting zoo secret performance from PEC parent negative
emotions, predicting ribbon secret performance from PEC parent negative emotions. All
other predictors and steps were identical using the method described above.
54
The first hierarchical regression consisted of three steps: a) standardized Peabody
score, child’s age, and parent’s level of education, b) family emotionality composite,
parent protectiveness, c) silly sounds incongruent trials predicting the child’s
performance on the zoo secret sharing task. Table 12 provides a summary of the
regression. None of the models in this analysis were statistically significant, indicating
parent protectiveness, family emotionality, and executive functioning are not good
predictors of the child’s performance on the zoo secret keeping task, measuring the
child’s emotion regulation. This hierarchical regression accounted for 3% of the
variability in the child’s performance on the zoo secret keeping task.
________________________________________________________________________
Table 12
Hierarchical Regression for Variables Predicting Zoo Secret Sharing Task (N = 79)
Model 1 Model 2 Model 3
Variable B SE β B SE β B SE β
Age .019 .121 .020 .019 .123 .020 .093 .152 .098
Education .003 .084 .005 .025 .089 .038 .031 .089 .047
Peabody -.01 .011 -.058 -.003 .011 -.03 .002 .013 .028
Protective .130 .213 .085 .146 .215 .095
Fam Emo .048 .054 .109 .053 .054 .119
SS Inc -.04 .045 -.13
R2
.004
.099
.021
.576
.031
.696 F change
55
The second hierarchical regression consisted of the same three steps: a)
standardized Peabody score, child’s age, and parent’s level of education, b) family
emotionality composite, parent protectiveness, c) silly sounds incongruent trials. This
regression was predicting the child’s performance on the ribbon secret keeping task.
Table 13 provides a summary of the regression. None of the models in this analysis were
statistically significant, indicating parent protectiveness, family emotionality, and
executive functioning are not good predictors of the child’s performance on the ribbon
secret keeping task, measuring the child’s emotion regulation. This hierarchical
regression accounted for 10.3% of the variability in the child’s performance on the ribbon
secret keeping task.
The third hierarchical regression replaced family emotionality with parent
negative emotion expression in a three step regression: a) standardized Peabody score,
child’s age, and parent’s level of education, b) parent negative emotion expression, parent
protectiveness, c) silly sounds incongruent trials. This regression was predicting the
child’s performance on the zoo secret keeping task. Table 14 provides a summary of the
regression. None of the models in this analysis were statistically significant, indicating
parent protectiveness, parent negative emotion expression, and executive functioning are
not good predictors of the child’s performance on the zoo secret keeping task, measuring
the child’s emotion regulation. This hierarchical regression accounted for 5.3% of the
variability in the child’s performance on the zoo secret keeping task.
56
________________________________________________________________________
Table 13
Hierarchical Regression for Variables Predicting Ribbon Secret Sharing Task (N = 79)
Model 1 Model 2 Model 3
Variable B SE β B SE β B SE β
Age .239 .141 .208 .258 .143 .224 .098 .170 .085
Education .064 .100 .079 .037 .105 .046 .020 .104 .025
Peabody .012 .012 .122 .007 .013 .073 -.004 .014 -.038
Protective -.251 .249 -.138 -.306 .248 -.168
Fam Emo .022 .064 .040 .013 .063 .023
SS Inc .087 .052 .250
R2
.049
1.23
.065
.579
.103
2.90 F change
The final hierarchical regression consisted of the same three steps as the third regression:
a) standardized Peabody score, child’s age, and parent’s level of education, b) negative
parent emotion expression, parent protectiveness, c) silly sounds incongruent trials. This
regression was predicting the child’s performance on the ribbon secret keeping task.
Table 15 provides a summary of the regression. None of the models in this analysis were
statistically significant, indicating parent protectiveness, negative parent emotion
expression, and executive functioning are not good predictors of the child’s performance
on the ribbon secret keeping task, measuring the child’s emotion regulation. This
hierarchical regression accounted for 11.8% of the variability in the child’s performance
on the ribbon secret keeping task.
57
_______________________________________________________________________
Table 14
Hierarchical Regression for Variables Predicting Zoo Secret Sharing Task (N = 79)
Model 1 Model 2 Model 3
Variable B SE β B SE β B SE β
Age .025 .121 .027 .004 .122 .004 .064 .150 .067
Education -.01 .085 -.010 -.019 .090 -.03 -.014 .091 -.021
Peabody .004 .011 .052 .002 .011 .029 .002 .013 .022
Protective .148 .212 .097 .162 .214 .105
Par Neg .331 .208 .195 .325 .209 .192
SS Inc -.031 .044 -.11
R2
.005
.108
.047
1.47
.053
.481 F change
________________________________________________________________________
Table 15
Hierarchical Regression for Variables Predicting Ribbon Secret Sharing Task (N = 79)
Model 1 Model 2 Model 3
Variable B SE β B SE β B SE β
Age .232 .142 .201 .239 .142 .208 .073 .168 .063
Education .076 .102 .093 .024 .108 .030 .007 .106 .009
Peabody .011 .012 .116 .006 .013 .065 -.005 .014 -.052
Protective -.257 .249 -.141 -.313 .247 -.172
Par Neg .242 .248 .116 .257 .245 .124
SS Inc .091 .051 .262
R2
.048
1.180
.076
1.040
.118
3.170 F change
58
DISCUSSION
The current study aimed to examine potential developmental differences between
children with and without a history of pediatric cancer. In particular, this study examined
cognitive ability, executive functioning, emotion regulation, and the ability to identify the
intentions of others. This project was approached from a family systems perspective and
aimed to account for the interactions between parents and their children. Some
significant differences between children with and without a history of pediatric cancer
were found. However, not all study hypotheses were supported.
It was first hypothesized that children with a history of pediatric cancer would
have significantly lower cognitive ability than children without a history of pediatric
cancer. Results from this study confirm this hypothesis and are consistent with previous
literature. Pediatric cancer treatments, including intrathecal chemotherapy and radiation
therapy, are known to cause cognitive deficits (Campbell et al., 2009; Carey et al., 2008;
Lesnik et al., 1998; Radcliffe et al., 1996). In the current study, a large number of the
children with a history of pediatric cancer received radiation therapy and or treatment for
ALL, which typically includes intrathecal chemotherapy (Campbell et al., 2009).
Because of this, it would be surprising to find no overall cognitive differences between
the samples.
The significant, positive correlation between Peabody scores and older age at
diagnosis as well as the significant negative correlation between Peabody scores and time
since diagnosis provides further evidence of the developmental effects of cancer
treatment on cognitive ability. Children whose brains were more developed at the time of
diagnosis, indicated by their older age, may have experienced fewer cognitive deficits
59
because the treatment side effects prevent brain development, without necessarily
destroying established neural networks. The significant negative correlation between
cognitive ability and time since diagnosis may indicate that cognitive deficits are not
immediate. Potentially, the cognitive deficits may worsen throughout the course of
treatment and beyond as a result of increased exposure to radiation or chemotherapy or as
a delayed effect, at least in this very young age group. Further longitudinal studies would
need to be conducted to substantiate these possibilities. Additionally, children without a
history of pediatric cancer may have fewer opportunities to attend school readiness
programs, as their time and resources are used combating their disease.
Even though this study found a significant difference in cognitive ability between
the two samples, practitioners, and parents can take solace in the finding that cognitive
scores for children with a history of pediatric cancer were well within established norms
for typical cognitive functioning. These are not the cognitive deficits seen with early
treatment protocols, even accounting for the possibility that the cognitive scores in this
study were slightly inflated. There is reason to believe that these children could grow up
to have intellectually stimulating lives and achieve their highest education and career
goals.
The second hypothesis predicted that children who experienced pediatric cancer
would have significantly lower levels of emotion regulation. This hypothesis was not
substantiated, as children with a history of pediatric cancer performed significantly better
on the zoo secret sharing task than did healthy children. Despite parent’s hesitation in
implementing strict behavior expectations, children with a history of pediatric cancer are
still learning to regulate their emotions (Young et al., 2002). It may be that these children
60
are learning emotion regulation through treatment procedures. Even if the child is scared
or sad, they have to learn to cooperate with their doctors and nurses to complete treatment.
Because pediatric cancer is such an emotional experience, learning to lie still while their
port is accessed, no matter the number of tears that flow down their cheeks, may require
more emotion regulation than a healthy child who learns not to cry when they do not get
their way.
However, these results are complicated by the non-significant results of the ribbon
secret sharing task, where children with a history of pediatric cancer performed worse
than children without a history of pediatric cancer. Although these results were not
significant, it is important to try to understand why these two tasks, which were designed
to measure the same thing, produced group means for both samples in opposite directions.
There was an added element of restraint in the ribbon secret sharing task because
the children were holding an actual ribbon while speaking to the robot. Many of the
children in both samples revealed the secret by waving the ribbon in front of the robot,
which highlights that the children were restraining their mouths and their hands. It may
have been that the physical restraint of keeping the secret was more difficult for the
children with a history of pediatric cancer. There may have been times during treatment
that the children were too tired, did not feel well enough, or were still unable to verbally
communicate with caregivers. Under these circumstances, children may revert to
pointing or more non-verbal forms of communication. They may be more accustomed to
using these types of communication than children without a history of pediatric cancer.
In addition, children in the pediatric oncology clinic are frequently given presents, prizes,
toys, and beads. They are typically eager to show others what they have been given.
61
Therefore, it would be more difficult for children with a history of pediatric cancer to
keep the ribbon secret than the zoo secret.
The children without a history of cancer may have more school experience than
children with a history of pediatric cancer. One of the main lessons in preschool and
early elementary school is learning what to do with your hands. Children are instructed
to have “quiet hands” that rest in the child’s lap and learn to keep their hands to
themselves. These lessons are less important in a family setting with less formal
instructions and with fewer children in the room. Therefore, if children with a history of
pediatric cancer did have less school experience than the children without a history of
pediatric cancer, they might not have learned these lessons as thoroughly. If these
lessons were learned by children in the school sample, it could help explain why children
without a history of pediatric cancer performed better on the ribbon secret sharing task
than the zoo secret sharing task.
It was hypothesized that children with a history of pediatric cancer would have
significantly lower levels of executive functioning than children without a history of
cancer. This hypothesis was not correct. There was no difference between children with
and without a history of pediatric cancer in terms of executive functioning as it relates to
the suppression of a prepotent response. This study provides preliminary evidence that
the child’s experience with pediatric cancer did not impact the development of their
executive functioning. This is extremely important as executive functioning was the
most basic process examined in this study and is the building block for more complicated
developmental processes including the ability to solve novel problems and decreased
internalizing and externalizing behavior (Garon et al., 2008; Riggs et al., 2003; Zelazo &
62
Frye, 1998). Evidence from this study cannot address potential developmental
differences in the processes that build on the child’s executive function. For children
with a history of pediatric cancer, the executive functioning foundation for the more
advanced processes is intact and provides hope that these further abilities could develop
normally as well.
Children with a history of pediatric cancer were hypothesized to have a
significantly better understanding of other people’s intentions. This hypothesis was
incorrect. In fact, children with a history of pediatric cancer performed significantly
worse than children without a history of pediatric cancer on the identifying intentionality
task. Previous research has shown that children with a history of pediatric cancer
perceive that they have less control than children with diabetes, cystic fibrosis, or healthy
peers (Kellerman et al., 1980). It could be that this differing perception of locus of
control impacts their ability to identify the intentions of others. Children think very
referentially, basing much of their perception of others on their own thought processes
(Malle et al., 2001; Piotrowski et al., 2013). It could be that children who have a history
of pediatric cancer feel less in control of their own actions and less often feel as though
they act intentionally. This in turn would lead them to have greater difficulty identifying
the intentions of others.
Additionally, the clinic staff makes a point to explain the purpose of each
procedure to the child and family. This could limit the development of intentionality, as
the children never need to infer the intentions of others. They simply wait to be explicitly
told why people around them do what they do.
63
Parents of a child with pediatric cancer were hypothesized to perceive
significantly higher levels of child vulnerability and parent protectiveness and less child
independence than parents of a child without a history of pediatric cancer. This
hypothesis was partially confirmed. Parents of children with a history of pediatric cancer
did perceive their children to be more medically vulnerable and displayed more
protective parenting behaviors than parents of children without a history of pediatric
cancer. This is in line with previous research. The degree to which parents of children
with a pediatric cancer diagnosis believe their children’s disease is life threatening
correlates with the behaviors the parents exhibit (Mereuta & Craciun, 2009). In fact,
parental perception of prognosis appears to be more predictive of parental behavior and
child outcomes than medical prognosis alone (Hauenstein, 1990; Mereuta & Craciun,
2009; Silver et al., 1998). Interestingly, the differences in parental behavior did not
carry over to child independence as there was no difference in the level of child
independence between the two samples. This could have been a function of the content
of the items. Most of the child independence items were related to basic self-care (Can
they use the toilet?) and rudimentary decision making (Can they choose their own
clothes?). These are appropriate independent behaviors for children in this age group.
The non-significant difference between samples might highlight that all children in this
age range, regardless of their cancer history, are not independent but very reliant on their
parents, as they should be. It may be that differences would emerge later in childhood
and it would be particularly interesting to look for potential differences in child
independence in the pre-teen age group.
64
Additionally, parents of children with a history of pediatric cancer more often
stated that their children were currently experiencing a chronic illness. This seems very
intuitive. However, not all families of a child with a history of pediatric cancer listed
their child as chronically ill. As stated above, this is important because it provides
another measure of the parent’s perception of their child’s disease and can impact
parenting (Hauenstein, 1990; Mereuta & Craciun, 2009; Silver et al., 1998).
There were no significant differences in the two samples in terms of how difficult
it was to set limits on behavior or how well the child dealt with separation from their
parent. This was not in line with previous research. Establishing expectations for
behavior has been listed as a particularly difficult task for mothers of children with
pediatric cancer. Mothers interviewed in the Young et al. study (2002) reported feeling
like they were walking a thin line between being too harsh by applying normal rules of
conduct and being too lenient, which could lead to “spoiling.” However, this study did
not directly compare a sample of mothers of a child with pediatric cancer to mothers of a
healthy child, limiting direct comparisons to the current study.
Usually medical professionals advise parents to treat their sick child as normally
as possible, but parents often overprotect and over-indulge their ill child (Van Dongen-
Melman & Sanders-Woudstra, 1986). Because this study was conducted in the medical
clinic, parents may have been more likely to answer the questions in line with the doctors’
advice, not necessarily based on their own behavior.
The fact that many of the children in the current sample were off treatment may
also have influenced these results. Uncertainty for the future could be a driving force for
difficulty enforcing expectations. When speaking about the expectations for their child,
65
mothers expressed concern about their child’s future, including significant physical,
psychological, or developmental impairments that could arise from their child’s cancer
experience (Young et al., 2002). Many of these fears have been dealt with by the end of
the child’s cancer treatment. Although many families are well aware of the possibility of
relapse, completing treatment alleviates initial uncertainty and would make it easier to
return to “normal” life, which could include more strict expectations and may account for
the non-significant results found in this study.
Parents of children with a history of pediatric cancer were hypothesized to report
lower levels of emotion regulation in their children than parents of children without a
history of pediatric cancer. This hypothesis was not supported by the results of this study.
There was not a significant overall effect of the parent’s report of their child’s emotion
regulation. These results contradict the results of the Zoo Secret Sharing task, which also
measures the child’s emotion regulation. Although there is no way to determine which
measure more correctly captures the child’s emotion regulation, this highlights a potential
methodological issue for future studies. More often, parents are asked to provide a report
of their child’s emotion regulation by completing a questionnaire. If parent reported
emotion regulation and emotion regulation tasks do not provide similar accounts, it must
be determined which method more accurately assesses child emotion regulation.
It was hypothesized that families with a child with a history of pediatric cancer
would express significantly more emotions, both positive and negative, than families with
a healthy child. This was not the case. There was also no difference in family
expressiveness for negative emotions. Although families of a child with a history of
pediatric cancer were trending toward expressing more positive emotions, the difference
66
between the hospital and school samples was not significant. Increased positive emotion
expression in families of a child with a history of pediatric cancer, although not
significantly different from families with healthy children, is in keeping with an
expanding body of literature finding positive outcomes for children with a history of
pediatric cancer (Phipps et al., 2014). This includes findings of psychological growth,
better adjustment, and an increased endorsement of a positive outlook, fewer depressive
symptoms, and lower trait anxiety following the cancer experience (Phipps et al., 2014;
Phipps & Shivastava, 1997).
It was hypothesized that parents would encourage more emotion expression, both
positive and negative, for children with a history of pediatric cancer. Contrary to
hypothesized results, there was no difference between parental encouragement of
emotion expression for either positive or negative emotions between children with and
without a history of pediatric cancer. All parents greatly encouraged their children to
express whatever emotion they were experiencing. This may partially be a function of the
young age of all children in this study. The youngest children enrolled on study are just
starting to verbally express their emotions. It would be detrimental to the child for the
parents to discourage early emotion expression. Additionally, parents of children this age
are continuing to build trust with their child so that their child will feel comfortable
expressing themselves when more serious situations arise in the future. There may have
been differences in parental encouragement of child emotion expression if an older
sample had been used in this study. Parents of healthy children would be less worried
about developing their child’s ability to express themselves and probably a bit less
67
interested in every emotion the child experiences. This could still be a major concern for
parents of a child with pediatric cancer.
Parents of a child with a history of pediatric cancer were expected to be less
willing to express their own emotions in front of their children. This effect was
hypothesized to be stronger for negative emotions. This hypothesis was partially
confirmed. While, there was no difference in the amount of positive emotions parents
expressed in front of their children, parents of children with a history of pediatric cancer
were less willing to express negative emotions in front of their children. Parents of
children with a history of cancer are most likely experiencing negative emotions as a
result of their child’s disease in addition to negative emotions surrounding more typical
parent stressors, such as interpersonal problems, employment concerns, or financial
issues. Although it is probably not beneficial for any child 4-7 years old to know the
intimate details of these topics, there might be a stronger desire on the part of the parents
of a child with pediatric cancer to keep a positive environment for their child in which
they can focus on fighting their disease. Parents of a healthy child might be more willing
to share struggles and stressors with their child because the other aspects of the child’s
life are secure.
Because there were a number of Hispanic children in the hospital sample and
none in the school sample, descriptive statistics for emotionality variables and cognitive
scores were examined. There was no reason to believe that the children’s ethnicity
greatly impacted scores on these variables. The presence of Hispanic children in the
hospital sample should not have impacted significant findings between the two groups.
68
Finally, it was hypothesized that the child’s performance on the emotion
regulation tasks would be predicted by family emotion expressiveness, parents’
perception of child vulnerability, parental protectiveness, and scores on the child emotion
regulation task. This hypothesis was not supported by the results. None of the potential
predictors or overall conceptualized models significantly predicted the child’s
performance on either emotion regulation task. This model was designed using mainly
parent measures predicting child performance to better understand the interactions
between both parties.
Conceptually, these results are surprising. It has been well-documented that
family members psychologically influence one another (Hoekstra-Weebers, Wijnberg-
Williams, Jaspers, Kamps, & van der Wiel, 2012; Kazak, 1997; Kroneberger et al., 1996;
Pai et a., 2007; Phipps et al., 2006; Van Dongen-Melman & Sanders-Woudstra, 1986).
To understand the nature of psychological influences, it has been suggested that the
family should be treated as a single entity composed of individual but interrelated
components where more proximal components have greater influence on the child
(Kazak, 1997; Pai et al., 2007). There is no more proximal influence on the child than
parent psychological processes (Pai et al., 2007). Yet, in this study, the child’s
performance could not be predicted from parent psychological processes. These results
may not be consistent with previous literature because parents do their best to shelter
young children from the potential severity of any scary situation, which could include the
child’s disease. This is substantiated by results in this study that found parents of
children with pediatric cancer express fewer negative emotions in front of their child than
parents of healthy children. Many of the previous studies enrolled a much larger age
69
range, often from elementary through high school or beyond. Parents may be sheltering
their children less as they grow up, causing the predictive power of the parent’s
psychological processing to increase over time, as information is shared more openly.
Additionally, the lack of an effect could result from the limited age range of participants
in this study. Because these processes are still developing in this age range, it might be
too early to see the full effects of the parental influence on the children’s behavior.
There were a number of limitations in this study. There was a relatively small
sample size and both samples contained some missing data. This is hard to avoid when
working with small children, as they get tired, may be in a bad mood, or decide they do
not want to complete a task. Increasing sample size would provide greater power and
more confidence in the results of the study. Another limitation is the conflicting reports
of child emotion regulation. It is hard to draw conclusions when two measures designed
to assess the same construct conflict with one another. Although the procedure for every
child was kept as consistent as possible, there was wide variability in the distractors,
settings, and interruptions. These distractions occurred in both samples and could have
differentially impacted the results.
Although a number of differences were found, there were fewer differences than
expected. Despite a potentially stressful and emotional pediatric cancer experience,
results from this study are in line with previous research, concluding that families of a
child with pediatric cancer are “normal families” dealing with extraordinary
circumstances (Kazak, 1997; Pai et al., 2007; Robinson et al., 2007).
70
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Appendix A
Demographic Information Collected
Please Answer the Following Questions:
Child’s Ethnicity: _____Black/African American _____ Hispanic _____ White/Caucasian
_____Other(please specify) ___________
What is the highest degree or level of school you or your spouse have completed?
____ Some High School, no diploma _____ High School Diploma or GED _____ Some
College Credit, no degree
____ Associates Degree ____ Bachelor’s Degree ____ Master’s Degree
____Doctorate Degree
What is your current marital status?
____ Married ____ Divorced ____ Single
Your date of birth: ___/___/______
Please list the gender and ages of your child’s brothers and sisters.
1. M F Age: ________ 3. M F Age: _________
2. M F Age: ________ 4. M F Age: _________
78
Appendix B
Hospital Consent Form
79
80
81
82
83
Appendix C
School Parent Letter and Consent Form
84
85
Appendix D
Family Expressiveness Questionnaire (Halberstadt, 1986)
Instructions
Please rate how often these responses occur in your family.
Please rate how often these
responses occur in your family.
Not at all
Frequently
Very
Frequently
1 2 3 4 5 6 7 8 9
1 Showing forgiveness 1 2 3 4 5 6 7 8 9
2 Thanking family members 1 2 3 4 5 6 7 8 9
3 Praising someone for good work. 1 2 3 4 5 6 7 8 9
4 Expressing anger at someone else's
carelessness.
1 2 3 4 5 6 7 8 9
5 Pouting over unfair treatment by a
family member.
1 2 3 4 5 6 7 8 9
6 Blaming one another for family
troubles.
1 2 3 4 5 6 7 8 9
7 Crying after a disagreement. 1 2 3 4 5 6 7 8 9
8 Showing dislike for someone. 1 2 3 4 5 6 7 8 9
9 Expressing embarrassment over a
stupid mistake.
1 2 3 4 5 6 7 8 9
10 Expressing excitement over future
plans.
1 2 3 4 5 6 7 8 9
11 Expressing disappointment over
something that didn't work out.
1 2 3 4 5 6 7 8 9
12 Telling someone how nice they look. 1 2 3 4 5 6 7 8 9
13 Expressing sympathy for someone's
troubles.
1 2 3 4 5 6 7 8 9
14 Expressing deep affection or love for
someone.
1 2 3 4 5 6 7 8 9
15 Quarreling with a family member. 1 2 3 4 5 6 7 8 9
16 Trying to cheer up someone who is
sad.
1 2 3 4 5 6 7 8 9
17 Telling a family member how hurt
you are.
1 2 3 4 5 6 7 8 9
18 Telling family members how happy
you are.
1 2 3 4 5 6 7 8 9
19 Threatening someone. 1 2 3 4 5 6 7 8 9
20 Saying "I'm sorry" when they were
wrong.
1 2 3 4 5 6 7 8 9
Positive Emotions: 1, 2, 3, 10, 12, 13, 14, 16, 18, 20
Negative Emotions: 4, 5, 6, 7, 8, 9, 11, 15, 17, 19
High scores indicate more emotion expression.
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Appendix E
Emotion Regulation Checklist (Shields & Cicchetti, 1997)
Instructions
Please rate how often your child performs the following actions.
Rarely Sometimes Often Always
1 Is a cheerful child R S O A
2 Responds positively to neutral or friendly comments
from adults.
R S O A
3 Transitions well from one activity to another; does not
become anxious, angry, distressed, or overly excited.
R S O A
4 Can recover quickly from episodes of upset or
distress.
R S O A
5 Is easily frustrated. R S O A
6 Responds with positive emotions to neutral or friendly
comments by peers.
R S O A
7 Is able to delay gratification. R S O A
8 Can say when s/he is feeling sad, angry or mad,
fearful or afraid.
R S O A
9 Is overly excited when attempting to engage others in
play.
R S O A
10 Displays little emotion. R S O A
11 Responds with negative emotions to neutral or
friendly comments from peers.
R S O A
12 Is empathetic towards others. R S O A
13 Displays negative emotions when attempting to
engage others in play.
R S O A
Reverse Score: 5, 9, 10, 11, 13
High scores indicate better emotion regulation.
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Appendix F
Parent Emotion Checklist (Nelson et al., 2012)
Instructions
Please tell us what you think about when your child shows these emotions. Please mark
one of the choices.
Not
Important
Somewhat
Important
Important Very
Important
1 My child should show or tell me
when he or she is happy.
NI SI I VI
2 My child should show or tell me
when he or she is sad.
NI SI I VI
3 My child should show or tell me
when he or she is angry.
NI SI I VI
4 My child should show or tell me
when he or she is scared.
NI SI I VI
High scores indicate greater importance placed on child’s emotion expression.
Instructions
Please tell us how often you show these emotions in front of your child. Please mark one
of the choices.
Never Rarely Sometime
s
Always
1 How often do you show your child that
you are happy?
N R S A
2 How often do you show your child that
you are sad?
N R S A
3 How often do you show your child that
you are angry?
N R S A
4 How often do you show your child that
you are scared?
N R S A
High scores indicate parents express more emotion in the presence of their children.
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Appendix G
Child Health and Family Functioning Questionnaire (Thomasgard & Metz, 1999)
Instructions
Please rate your agreement with the statements in regard to your child.
1 My child currently has a chronic medical condition. Yes No
2 My child has been seriously ill. Rarely Sometimes Often Always
3 I have been afraid that my child might die from an
illness.
R S O A
4 It is difficult to set limits on behavior. R S O A
5 I leave my child with anyone outside of my family. R S O A
6 My child deals with separation from me. R S O A
7 When I am not with my child, I am worried that s/he
may get hurt or be involved in an accident.
R S O A
8 I worry that my child
A Is pale R S O A
B Has a sickly appearance R S O A
C Is blue around the mouth when crying R S O A
D Breathes too fast R S O A
E Gets sick very quickly R S O A
9 I keep my child from participation in an activity because
I am afraid s/he might get or become ill.
R S O A
10 I still sometimes worry that my child may die. R S O A
11 I allow my child to choose his/ her own clothing. R S O A
12 My child can choose the proper foods. R S O A
13 My child can get along without me. R S O A
14 My child can be trusted to do things alone. R S O A
15 My child can bathe without help. R S O A
16 My child is encouraged to express his/ her opinion, even
when I disagree.
R S O A
17 My child is allowed to refuse to eat certain foods. R S O A
18 I worry about my child’s safety when I am away
overnight.
R S O A
19 My child can use the toilet without assistance. R S O A
Child Vulnerability: 2, 3, R5, R6, 7, 8a-e, 9
High scores indicate greater parental feelings of child vulnerability.
Parent Protection: R5, 7, 17
High scores indicate greater protective behaviors exhibited by parents.
Child Independence: 10, 11, 12, 13, 14, 15, 16, 18
Higher scores indicate more child independence.
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Appendix H
Intensity of Treatment Rating (Werba et al., 2007)
Instructions
Please answer the following questions about your child’s cancer as accurately as possible.
Child’s Diagnosis: ____________________ Date of Diagnosis: ___/___/_____
Stage: 1 2 3 4 Relapse: YES NO
Is your child currently on treatment: YES NO
Please check all treatment procedures that your child has experienced.
_____ Chemotherapy _____ Surgery
_____ Radiation Therapy _____ Transplant
ITR-2 Scoring Levels 1-4
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Appendix I
Silly Sounds Task (Gerstadt et al., 1994)
Dog Picture
Cat Picture
91
Appendix J
Secret Sharing Task (Bethel et al., 2011)
Zoo Task
Experimenter: Do you know what a secret is? A secret is something that somebody tells you that you
are not supposed to tell anyone else. I have a secret to tell you. I am afraid of (tigers or
lions) and I do not want anyone to know that I am afraid of (tigers or lions). This will be
our secret. Now you are going to play with my robot friend while I finish my work.
Robot:
1. I want to go somewhere special with her. Where do you think we should go?
2. I want to go with her to the zoo. What kind of animals do you think she would
like to see?
3. What animals do you think she might be afraid of?
4. I really like (secret animal: tigers or lions). I want to show her the (secret animal)
cage. Do you think that would be a good idea?
5. Do you think she might be afraid of (secret animal).
Ribbon Task
Experimenter: Do you know what a secret is? A secret is something that somebody tells you that you
are not supposed to tell anyone else. I have another secret for you. Look what I have.
(Let the child pick a ribbon.) I have a prize for you to give to your (doctor or
nurse/teacher) and I do not want anyone to know that we have these ribbons. It is a
surprise! This will be our secret. Now you are going to play with the robot again while I
finish my work.
Robot:
1. I want to do something special. What do you think we should do?
2. I want to do something special for someone. Do you think we could give
someone 2a prize?
3. What kind of prize should we give?
4. I really like giving prizes. We could say thank you to your doctors and nurses/
teacher by giving them something special. Do you think that would be a good
idea?
5. Is there a prize for your doctor or nurse/teacher for being the world’s best
caretaker/teacher?
Higher scores indicate greater emotion regulation.
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Picture of Animated Robot
93
Appendix K
Identifying Intentionality (Pellizzoni et al., 2009; Baird & Moses, 2001)
(Correct responses are shown in parentheses)
Instructions
We are going to hear some stories about friends. During the stories, I am going to ask
you some questions about the children’s thoughts and feelings.
Stories
A girl named Emma (Jacob) is at her house.
A girl named Sophie (Alex) is at her house.
Look what Sophie has with her—she has a (frog).
Sophie loves frogs, but Emma hates frogs.
Can you remember— does Sophie love frogs? (yes) Does Emma love frogs? (no)
Sophie wants to bring the frog to Emma’s house. If Sophie brings the frog over, Emma
will be upset. She will be angry. Why will Emma be angry? (because she hates frogs).
Now listen carefully. Sophie knows that Emma hates frogs and that the frog will make
Emma angry.
Does Sophie know that Emma will be angry to see the frog? (yes)
Sophie brings the frog to Emma’s house, and she gets angry. Now I have a question for
you:
Test Questions: Did Sophie make Emma angry on purpose… did she mean to? (yes)
Did Sophie make Emma angry by accident… she didn’t mean to? (no)
Does Emma think that Sophie made her angry on purpose… did she mean to? (yes)
Does Emma think that Sophie made her angry by accident… she didn’t mean to? (no)
A girl named Abby (Anthony) is at her house.
A girl named Bella (Michael) is at her house.
Look at what Bella has with her- she has a (stuffed dog).
Bella loves this stuffed dog, and Abby loves this stuffed dog.
Can you remember—Does Bella love the dog? (yes) Does Abby love the dog? (yes)
Bella wants to bring the dog to Abby’s house. If Bella brings the dog over, Abby will be
very happy. Why will Abby be happy? (because she loves the dog).
Now listen very carefully. Bella knows that Abby loves the dog and that she will be
really happy when she sees the dog.
Does Bella know that Abby will be very happy to see the dog? (yes)
Bella brings the dog over to Abby’s house, and she is very happy. Now I have a question
for you:
Test Question: Did Bella make Abby happy on purpose… did she mean to? (yes)
Did Bella make Abby happy by accident…she didn’t mean to? (no)
Does Abby think that Bella made her happy on purpose… did she mean to? (yes)
Does Abby think that Bella made her happy by accident… she didn’t mean to?
A girl named Elizabeth (Josh) is at her house.
A girl named Ava (Billy) is at her house.
Look what Ava has with her—she has a (jump rope).
94
Ava loves to jump rope, and Elizabeth loves to jump rope.
Can you remember— does Ava love to jump rope? (yes)
Does Elizabeth love to jump rope? (yes)
Ava brings the jump rope to Elizabeth’s house. While they were playing, Elizabeth broke
the jump rope. This made Ava sad.
Why was Ava sad? (Because Elizabeth broke the jump rope). I have a question for you:
Test question. Did Elizabeth make Ava sad on purpose… did she mean to? (no)
Did Elizabeth make Ava sad by accident…she didn’t mean to? (yes)
Does Ava think that Elizabeth made her sad on purpose… did she mean to? (no)
Does Ava think that Elizabeth made her sad by accident… she didn’t mean to? (yes)
A girl named Olivia (Ethan) is at her house.
A girl named Chloe (Chris) is at her house.
Look what Chloe has with her—she has a (hamster).
Now Chloe loves hamsters, and Olivia is afraid of hamsters.
Can you remember— does Chloe love hamsters? (yes) Does Olivia love hamsters? (no)
Chloe wants to bring the hamster to Olivia’s house. If Chloe brings the hamster over,
Olivia will be very scared.
Why will Olivia be very scared? (because she is afraid of hamsters).
Now listen very carefully. Chloe does not know that Olivia is afraid of hamsters and that
she will be scared when she sees the hamster.
Does Chloe know that Olivia will be very scared to see the hamster? (no)
So Chloe brings the hamster over to Olivia’s house, and she gets very scared.
Now I have a question for you:
Test question. Did Chloe make Olivia scared on purpose… did she mean to? (no)
Did Chloe make Olivia scared by accident…she didn’t mean to? (yes)
Does Olivia think that Chloe made her scared on purpose… did she mean to? (no)
Does Olivia think that Chloe made her scared by accident… she didn’t mean to? (yes)
A girl named Maddie (Matt) is at her house.
A girl named Natalie (Danny) is at her house.
Look what Natalie has with her—she has (ice cream).
Natalie loves ice cream, and Maddie loves ice cream.
Can you remember— does Natalie love ice cream? (yes)
Does Maddie love ice cream? (yes)
Natalie wants to bring the ice cream to Maddie’s house. If Natalie brings the ice cream,
Maddie will be happy. Why will Maddie be happy? (because she loves ice cream).
Now listen carefully. Natalie doesn’t know that Maddie loves ice cream and that the ice
cream will make Maddie happy.
Does Natalie know that Maddie will be happy to eat ice cream? (no)
Natalie brings the ice cream to Maddie’s house, and she is happy. Now I have a question
for you:
Test question. Did Natalie make Maddie happy on purpose… did she mean to? (no)
Did Natalie make Maddie happy by accident…she didn’t mean to? (yes)
Does Maddie think that Natalie made her happy on purpose… did she mean to? (no)
Does Maddie think that Natalie made her happy by accident… she didn’t mean to? (yes)
95
Pictures Accompanying Stories
Girls Frog Story
96
Boys Frog Story
97
Girl Dog Story
98
Boys Dog Story
99
Girls Jump Rope Story
100
Boys Jump Rope Story
101
Girls Hamster Story
102
Boys Hamster Story
103
Girls Ice Cream Story
104
Boys Ice Cream Story
105
106
bbb
107
108
ALEXANDRA (LEXIE) DELONE [email protected]
Graduate Education:
Masters in Psychology at Wake Forest University
GPA: 3.52
Undergraduate Education:
Honors College, College of Charleston, Charleston, SC
Bachelor of Science in Psychology, December 2011
GPA: 3.88
Psychology GPA: 3.79
Study Abroad: Semester at Sea through the University of Virginia, Fall 2010
Research:
“Emotion Regulation Executive Functioning, and Understanding of Intentionality in Children with a
History of Pediatric Cancer” Graduate Thesis Research with Dr. Deborah Best and Dr. Thomas
McLean, 2013-2014
o Examined potential differences between children with pediatric cancer and healthy children in terms
of self-regulatory behaviors, with particular emphasis on emotional regulation.
o Orchestrated all aspects of design and implementation of the study including obtaining IRB
approval, preparing materials, recruiting participants, analyzing data, and writing a thesis
“Parental Distress, Child Post Traumatic Stress Symptoms, and the Impact of Childhood Cancer”
Research with Dr. Sean Phipps, 2013
o Examined to what extent the experience of childhood cancer impacts the relationship between
parental distress and child PTSS using both child and parent reports.
o Research project conducted at St. Jude Children’s Research Hospital in Memphis, TN as part of a
summer internship.
“Healthy Preschoolers’ Perceptions of Illness” Graduate Research with Dr. Deborah Best, 2013
o Investigated the interaction between preschoolers’ knowledge, empathy, and prosocial behavior
regarding peers with various medical conditions
o Orchestrated all aspects of design and implementation of the experiment including obtaining IRB
approval, preparing materials, recruiting participants, analyzing data and completing a poster
presentation at Wake Forest University
“Music Preference and Focus of Listening Behavior” Research with Dr. Susan Simonian, 2011
o Investigated whether participants’ music preference affects their listening behavior in terms of
different genres
o Orchestrated all aspects of design and implementation of the experiment including obtaining IRB
approval, developing questionnaires, recruiting participants, analyzing data and writing a final
manuscript for submission to a peer reviewed scientific journal
“Effects of Music on Children and Adolescents” Independent Study with Dr. Susan Simonian, 2011
o Wrote a literature review paper on the importance of music in the lives of children and adolescents
focusing on the social psychological effects of music as well as the effectiveness of music therapy
for certain populations
109
“Peer Pressure in a Local Coffee Shop” Research with Dr. Lisa Thomson Ross, 2009
o Conducted an experiment on the influence of company on the size and healthiness of coffee orders
o Prepared a poster that was presented at the College of Charleston School of Math and Science
Research Day 2009
Work Experience:
Pediatric Oncology Education Internship at St. Jude Children’s Research Hospital, Summer 2013
o Selected to participate in a summer research experience at St. Jude Children’s Research Hospital in
Memphis, TN.
o Worked 40+ hour weeks on clinical research protocols in the hospital’s psychology clinic
o Attended daily seminars on various topics related to pediatric cancer and the ongoing research at St.
Jude
Teaching Assistant at Wake Forest University, Fall 2012, Spring 2013, Fall 2013, Spring 2014
o Conducted lab sessions for an undergraduate research methods and statistics class
Intern, Carolina Autism in Charleston, SC, Fall 2011
o Conducted ABA therapy sessions with children with autism spectrum disorder as a line therapist
o Learned about and constructed appropriate learning aids for children of different ability levels
o Completed 120 hours on site
Pre-Teacher, REACH Program at the College of Charleston, Spring 2012
o Taught and mentored special-needs college students enrolled in College of Charleston’s REACH
program
o Responsible for lesson plans, leading classroom sessions, holding office hours, and offering overall
support for the students
Intern, the Pennsylvania Attorney General’s Office, Summer 2011
o Processed Home Improvement Contractor Program applications for the Department of Consumer
Welfare
Program Assistant for Volunteer and Community Service Coordinator on Semester at Sea, Fall 2010
o Assisted and organized any efforts relating to volunteer and community service
o Oversaw two organizations, Students of Service and Vicarious Voyage by arranging reflections
groups, seminars, and independent service opportunities as well as organizing correspondence
between SAS students and 55 classrooms in the US
Development and Communications Intern, Heads Up!, Summer 2009
o Planned the Project Fair for a non-profit committed to the children of the DC public schools
o Completed around 240 hours on site
The Fund for American Studies: The Institute on Philanthropy and Voluntary Service, Summer 2009
o Balanced 6 credit hours at Georgetown University, a 30 hour a week internship, and orchestrated a
philanthropy project, in Washington, DC
Sound Engineer at Studio H, Hershey Park, Hershey, PA, 2007-2011
o Use karaoke tracks and professional equipment to mix amateur CD and DVD recordings
Voice Coach at the Music for Life Studio, 2006-2008
o Taught voice classes to K-7th graders and prepared them for live performances
Volunteer Experience:
Activity Coordinator: Memphis Grizzlies House at St. Jude, Summer 2013
o Responsible for the planning and coordination of weekly activity nights at one of St. Jude’s Housing
Facilities, serving families battling childhood cancer
o Organized age appropriate crafts and games for the patients, siblings, and parents
110
President: College of Charleston Volunteer Corps, Spring 2010 and 2011 and Fall 2011
o Arrange volunteer opportunities & activities to better the Charleston area and bring unity to the
students in Volunteer Corps
Relay for Life, 2009-2012
o Raise money for the American Cancer Society and participate in a 12 hour relay-walk
Habitat for Humanity 2006-2012
o Built more than 10 houses for Habitat chapters in Charleston, SC, Central PA, Ghana, and South
Africa
Elementary Children’s Tutor, Fall 2010
o Tutored children between the ages of 4 and 9, 1-2 hours a day while on Semester at Sea
o Facilitated both one on one and group activities relating to music, math, reading, cultural activities,
journaling, and scrap-booking
Volunteer/Service Opportunities on Semester at Sea, Fall 2010
o Volunteered with international and local charities while studying abroad with Semester at Sea
o SOS Children’s Village, Opportunity International, local schools, and orphanages
o Located in Morocco, Ghana, South Africa, and India
Vicarious Voyage Coordinator, Fall 2010
o Corresponded with 4 fourth grade classrooms while on Semester at Sea sending weekly emails and
pictures
o Prepared pictures & documents to be sent from SAS students to 55 different k-12 classes in the US
Leadership Activities and Organizations:
Honors Ambassador, 2010- 2012
o Meet with potential honors students, take them to lunch, show them around campus while answering
any questions they might have about CofC and the Honors College
Psychology Club, 2009-2011
o Learn about psychology related opportunities on and off campus as well as career options
Chorus President, 2007-2008
o Responsible for attendance, money allocation, students’ choral needs, & acting as a liaison between
students & director
Girl Scouts of America, 1996-2008
o Involved 1-12 grades, moving from Brownies through Senior girl scouts, earning my bronze and
silver awards
Honors and Awards:
PSI CHI Psychology Honors Society, inducted Spring 2011
Scholar at Sea Scholarship from the National Society of Collegiate Scholars, August 2010
Golden Key Honor Society, inducted in 2009
National Society for Collegiate Scholars, inducted in 2010
Phi Eta Sigma Honors Society, inducted in 2009
College of Charleston’s Dean’s List for the Fall 2008 and Spring 2009 Academic Year
Faculty Honors every semester at the College of Charleston
Presentations
“Parental Distress, Child Post Traumatic Stress Symptoms, and the Impact of Childhood Cancer”
August 14, 2013 at St. Jude Children’s Research Hospital