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Childhood cancer survivorship: parental factors associated with survivor's follow-up care behavior and mental health
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Childhood cancer survivorship: parental factors associated with survivor's follow-up care behavior and mental health
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CHILDHOOD CANCER SURVIVORSHIP: PARENTAL FACTORS ASSOCIATED
WITH SURVIVOR’S FOLLOW-UP CARE BEHAVIOR AND MENTAL HEALTH
BY
Rhona Indira Slaughter, MA
____________________________________________________________
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
PREVENTIVE MEDICINE:
HEALTH BEHAVIOR RESEARCH
May 2018
Rhona I. Slaughter
ii
DEDICATION
To Ryan, age 15 & Rylie, age 13,
“The path from dreams to success does exist.
May you have the vision to find it,
the courage to get onto it,
and the perseverance to follow it.”
- Kalpana Chawla
iii
ACKNOWLEDGMENTS
First and foremost, I must thank my advisor and mentor, Dr. Joel Milam, for his
incredible patience, support and encouragement. You put up with a lot from me over the past
nine years and remained positive and encouraging the entire time. Thank you for your guidance
both professionally and personally. I also offer sincere thanks to my committee members, Drs.
Lourdes Baezconde-Garbanati, Julie Cederbaum, Ann Hamilton, and Jennifer Unger, who were a
constant source of support throughout the entire dissertation process.
I would like to thank the USC Department of Preventive Medicine, and the division of
Health Behavior Research for allowing me the opportunity to find myself and spread my wings.
To Marny Barovich, your assistance throughout my time at USC was beyond measure. To the
Project Forward I & II team members, thank you for providing me with much needed feedback
and a critical eye in a gentle manner. I would also like to thank the various professors I have
assisted over the years. Your guidance and your faith in my ability to lead in the classroom
provided me with valuable experience for my future career.
On a personal note, I could not have finished this dissertation without the unconditional
love and support from my sister, Nadine Lichtenberger, my dear friend, Randa Calmelat, and my
cousin, Sonya Felton-White, who always projected a positive attitude and lent a shoulder to lean
on whenever I needed it. Special thanks go to my parents, John and Barbara Kumar, for giving
me the gift of perseverance, for believing in me and for always being available to babysit, shop,
or do whatever was needed. I would also like to recognize Linda and Jamie for all that they do
behind the scenes; and acknowledge JCS for peripheral contributions throughout the years.
Finally, I extend my sincerest gratitude to my children, Ryan and Rylie, who provided me
with the motivation to follow my dreams and who stood by my side every step of the way during
iv
the good times and during the darkest hours. Always remember that it is never too late to change
your path and change your life. I love you very much.
v
TABLE OF CONTENTS
Dedication ....................................................................................................................................... ii
Acknowledgments.......................................................................................................................... iii
List of Tables ............................................................................................................................... viii
List of Figures ..................................................................................................................................x
Abbreviations ................................................................................................................................. xi
Abstract ......................................................................................................................................... xii
Chapter 1: Introduction ....................................................................................................................1
Specific Aims .......................................................................................................................1
Background and Significance ..............................................................................................3
Childhood cancer survivorship and follow-up care .................................................4
Child and parent healthcare self-efficacy ................................................................6
CCS mental health ...................................................................................................7
Parent mental health .................................................................................................8
Hispanic ethnic disparities .......................................................................................9
Hispanic acculturation discrepancy .......................................................................10
Introduction to Dissertation Studies...................................................................................11
Study 1 Theoretical framework .............................................................................11
Study 1 Research hypotheses .................................................................................12
Study 2 Theoretical framework .............................................................................15
Study 2 Research hypotheses .................................................................................16
Study 3 Theoretical framework .............................................................................20
Study 3 Research hypotheses .................................................................................20
Chapter 2: Methods ........................................................................................................................24
The Project Forward Cancer Survivorship Study ..........................................................................24
Participants .........................................................................................................................24
Data Collection Procedure .................................................................................................25
Measures ............................................................................................................................26
Previous follow-up care .........................................................................................26
Intent to seek follow-up care ..................................................................................27
Healthcare Self-efficacy Scale ...............................................................................27
Posttraumatic Growth Inventory - SF ....................................................................27
Pediatric Quality of Life Scales .............................................................................28
Center for Epidemiological Studies Depression Scale ..........................................29
Perceived Stress Scale............................................................................................29
Impact of Events Scale...........................................................................................30
Acculturation Rating Scale for Mexican Americans – II ......................................30
Acculturation discrepancy measure .......................................................................31
vi
Covariates ..............................................................................................................31
Statistical Analysis .............................................................................................................32
Descriptive characteristics .....................................................................................32
Missing data ...........................................................................................................32
Chapter 3: Study 1
Childhood Cancer Survivorship: The associations between parent healthcare self-efficacy, child
healthcare self-efficacy and follow-up care behavior ....................................................................34
Abstract ..............................................................................................................................35
Introduction ........................................................................................................................36
Methods..............................................................................................................................41
Participants and procedure .....................................................................................41
Measures ................................................................................................................42
Statistical analysis plan ..........................................................................................43
Results ................................................................................................................................44
Descriptive statistics ..............................................................................................44
Bivariate correlations .............................................................................................44
Multivariable regression model outcomes .............................................................45
Discussion ..........................................................................................................................48
Present findings ......................................................................................................48
Strengths and limitations........................................................................................48
Conclusion .............................................................................................................49
Chapter 4: Study 2
Relationships between parent and child mental health among Hispanic and non-Hispanic
Childhood Cancer Survivors ..........................................................................................................57
Abstract ..............................................................................................................................58
Introduction ........................................................................................................................59
Methods..............................................................................................................................64
Participants and procedure .....................................................................................64
Measures ................................................................................................................65
Statistical analysis plan ..........................................................................................69
Results ................................................................................................................................70
Descriptive statistics ..............................................................................................70
Bivariate correlations .............................................................................................71
Zero order correlations ...........................................................................................72
Multivariable regression model outcomes .............................................................72
Discussion ..........................................................................................................................75
Present findings ......................................................................................................75
Strengths and limitations........................................................................................77
Conclusion .............................................................................................................79
Chapter 5: Study 3
The role of acculturation discrepancy and mental health associations among Hispanic childhood
cancer survivors and their parents. .................................................................................................96
Abstract ..................................................................................................................97
vii
Introduction ........................................................................................................................98
Methods............................................................................................................................104
Participants and procedure ...................................................................................104
Measures ..............................................................................................................104
Statistical analysis plan ........................................................................................110
Results ..............................................................................................................................111
Descriptive statistics ............................................................................................111
Bivariate correlations ...........................................................................................111
Zero order correlations .........................................................................................112
Multivariable regression model outcomes ...........................................................112
Discussion ........................................................................................................................113
Present findings ....................................................................................................115
Strengths and limitations......................................................................................117
Conclusion ...........................................................................................................118
Chapter 6: General Discussion.....................................................................................................139
Summary of Findings .......................................................................................................139
Dissertation Limitations and Strength .............................................................................143
Final conclusion ...............................................................................................................145
References ....................................................................................................................................146
Appendix ......................................................................................................................................165
viii
LIST OF TABLES
Table 1-1. General demographic data on all Project Forward Childhood Cancer Survivor Study
participants. ........................................................................................................................................26
Table 3-1. General demographic data comparing the original Project Forward Childhood Cancer
Survivor Study participants excluded from the current study versus participants included in the
current study.......................................................................................................................................51
Table 3-2. Descriptive statistics of demographic characteristics and study variables of interest
including their associations with CCS intent to seek follow-up care ................................................52
Table 3-3. Correlation matrix between demographic variables and the study variables of
interest ................................................................................................................................................55
Table 3-4. Final multivariable regression models of intent to seek follow-up among CCS
stratified by age under 21 years old vs. 21 years and older ...............................................................56
Table 4-1. Demographic comparisons of CCS and their parents between the Hispanic and non-
Hispanic parent/child dyads. ..............................................................................................................80
Table 4-2. Univariate comparisons between Hispanic and non-Hispanic CCS outcome variables
of interest and parent indicator study variables. ................................................................................81
Table 4-3. Bivariate associations between main-effect study variables and potential demographic
covariates ...........................................................................................................................................83
Table 4-4. Zero order correlations among main study variables, and ethnic and acculturation
variables .............................................................................................................................................85
Table 4-5. Adjusted standardized parameter estimates for parent mental health indicators
associated with CCS Perceived Stress, CCS Depressive Symptoms, and corresponding
subscales. ...........................................................................................................................................86
Table 4-6. Adjusted standardized parameter estimates for parent mental health indicators
associated with CCS Posttraumatic Growth, CCS Quality of Life, and all corresponding
subscales. ...........................................................................................................................................90
Table 5-1. Descriptive statistics of key demographic and clinical variables for HCCS and their
parents.. ..............................................................................................................................................119
Table 5-2. Descriptive statistics of outcome variables of interest for HCSS and indicator
variables of interest for the parent indicator variables of interest.. ....................................................120
ix
Table 5-3. Bivariate associations between main-effect study variables and potential
demographic covariates. ...................................................................................................................122
Table 5-4. Zero order correlations among main study variables, and ethnic and acculturation
variables for HCCS and parents .........................................................................................................124
Table 5-5. Adjusted standardized parameter estimates for the relationship between HCCS
outcomes Hispanic/Anglo acculturation discrepancy, and between HCCS and parent mental
health factors as moderated by Hispanic/Anglo-American acculturation discrepancy. ....................125
x
LIST OF FIGURES
Figure 1-1. Conceptual diagram for Study 1 depicting the mediating function of CHSE
and PREV on the relationship between PHSE and INTENT, as moderated by child’s
age ..................................................................................................................................................14
Figure 1-2. Conceptual model for influences of parental mental health on the mental
health of Hispanic and non-Hispanic childhood cancer survivors, as moderated by
Hispanic ethnicity ..........................................................................................................................19
Figure 1-3. Conceptual model for associations of parental mental health on the mental
health of Hispanic childhood cancer survivors, as moderated by acculturation
discrepancy ....................................................................................................................................23
Figure 5-1. Itemized comparisons of parent versus child responses on Hispanic and
Anglo-American acculturation measures .....................................................................................131
Figure 5-2. Graph of the relationship between parent depressive symptoms and
predicted HCCS pediatric quality of life at different levels of Anglo-American
orientation ...................................................................................................................................132
Figure 5-3. Graph of the relationship between parent depressive symptoms and
predicted HCCS social functioning at different levels of Anglo-American orientation ..............133
Figure 5-4. Graph of the relationship between parent negative affect and predicted
HCCS social functioning at different levels of Anglo-American orientation..............................134
Figure 5-5. Graph of the relationship between parent somatic symptoms and predicted
HCCS social functioning at different levels of Anglo-American orientation .............................135
Figure 5-6. Graph of the relationship between parent depressive symptoms and
predicted HCCS physical health at different levels of Anglo-American orientation ..................136
Figure 5-7. Graph of the relationship between parent negative affect and predicted
HCCS physical health at different levels of Anglo-American Acculturation ..............................137
Figure 5-8. Graph of the relationship between parent somatic symptoms and predicted
HCCS physical health at different levels of Anglo-American .....................................................138
xi
ABBREVIATIONS
ACS: American Cancer Society
ALL: Acute Lymphoblastic Leukemia
ARSMA-2: Acculturation Rating Scale for Mexican Americans – II
AYA: Adolescent and Young Adult
CCS: Childhood Cancer Survivor
CCSS: Childhood Cancer Survivorship Study
CESD: Center for Epidemiological Studies Depressive Symptoms Scale
CHSE: Child Healthcare Self-Efficacy
COG: Children’s Oncology Group
HCCS: Hispanic Childhood Cancer Survivor
IES: Impact of Event Scale
INTENT: Intent to seek follow-up care
IMBP: Integrated Model of Behavior Prediction
ITR-2: Intensity Treatment Rating Scale
PEDSQ: Pediatric Quality of Life
PREV: Previous Follow-up care visit
PHSE: Parent Healthcare Self-Efficacy
PSS: Perceived Stress Scale
PTG: Posttraumatic Growth
PTSD: Posttraumatic Stress Disorder
SEER: Surveillance, Epidemiology and End Results; Los Angeles Cancer Surveillance Program
xii
ABSTRACT
According to the National Cancer Institute, just over 15,000 children and adolescents in
the United States are diagnosed with cancer annually. Fortunately, more than 80% are expected
to survive their cancer experience and move into survivorship care. Oftentimes in adulthood, a
phenomenon known as late effects may occur when a secondary medical issue appears as a result
of the childhood cancer treatment. Consequently, the Children’s Oncology Group recommends
that all Childhood Cancer Survivors (CCS) attend lifetime annual follow-up visits to diagnose
and mitigate the severity of potential late effects. In addition to a physical assessment, a
psychological evaluation is also included in this annual visit as some CCS are known to
experience anxiety, depression, and cognitive impairments as a result of their cancer experience.
Furthermore, research on the mental health of Hispanic CCS (HCCS) currently comprises very
little of the existing literature. It is possible that unique factors, such as cultural influence, may
serve to protect or exacerbate mental health conditions among these HCCS.
The primary purpose of this dissertation was to examine parent-level factors associated
with CCS health promoting behaviors and mental health outcomes, as parents are primary
sources of support for their children during cancer treatment. Study 1 examined the relationship
between parent cancer-related healthcare self-efficacy (PHSE), CCS cancer-related healthcare
self-efficacy (CHSE), previous follow-up care visits (PREV) and the intent of the CCS to seek
follow-up care (INTENT). Study 2 investigated parent stress and depressive symptoms with CCS
stress and depressive symptoms, as well as CCS posttraumatic growth and quality of life.
Comparisons were studied between Hispanic and non-Hispanic dyads. Study 3 further examined
the parent/CCS mental health relationships in a sample of Hispanic-only dyads by investigating
xiii
the moderating effect of acculturation discrepancy (when the child acculturates to Anglo-
American culture at a faster rate than the parent).
The results of the adjusted models in Study 1 revealed that PHSE was directly associated
with INTENT, and moderated by age. As a result, PHSE was found to be associated with
INTENT in CCS under 21 years old (vs over 21 years old), whereas CHSC was more important
to the CCS 21 years and older. Study 2 found that parent perceived stress and depressive
symptoms were positively associated with CCS depressive symptoms, and negatively related to
CCS posttraumatic growth and quality of life. Moreover, the relationship between parent
perceived stress and CCS positive mental health outcomes was significant among Hispanic-only
(vs non-Hispanic) dyads. In Study 3 the discrepancy between parent and HCCS levels of
Hispanic acculturation was positively associated with HCCS perceived stress. The discrepancy
between CCS and parent-level Anglo-American acculturation was positively associated with
HCCS posttraumatic growth and quality of life. Finally, the negative relationship between parent
depressive symptoms and HCCS quality of life was stronger among the dyads with greater discrepancies
in Anglo-American acculturation.
The results of these studies identify some of the parental and child factors associated with
follow-up care while highlighting how ethnicity and culture may influence mental health
outcomes in HCCS. Clinical implications of this study suggest possible additions to current
survivorship program protocols to include individually tailored support of cancer-related
healthcare self-efficacy in CCS during the transition from child-centered into adult-centered
survivorship care, and to address acculturation barriers among HCCS and parents. Despite some
of the limitations in this cross-sectional study, this dissertation empirically informs current gaps
in the sparse Hispanic childhood cancer survivorship literature. More research is needed to study
xiv
the longitudinal causal effects of parent indicators on CCS health promoting behaviors and
mental health outcomes.
1
CHAPTER 1: INTRODUCTION
Specific Aims
Annual follow-up care is vital to maintaining the health of the Childhood Cancer
Survivors (CCS) as it can provide early detection of a secondary cancer or late effect. Parents
provide the majority of support for children during cancer treatment, and as such, their traits,
behavior and mental health may influence a lifetime of CCS health promoting behaviors and
mental health outcomes. For example, obtaining treatment and establishing early follow-up care
routines is largely dependent on the parents of CCS. Although a plethora of research exists on
long-term behavioral and mental health outcomes experienced by CCS, little research explores
the parental influences associated with these outcomes.
An important turning point in long-term follow-up care occurs when CCS transition from
child-centered survivorship care to adult-centered survivorship care. Therefore, it is important to
understand parental characteristics and behavior that may contribute to the likelihood of CCS
obtaining future follow-up care after the transition. Study 1 examined the relationships between
parent cancer-related healthcare self-efficacy, cancer-related CCS healthcare self-efficacy, CCS
previous follow-up care behavior and their intent to obtain future follow-up care. Study 1 also
investigated the moderating associations between CCS age and these relationships.
It is not uncommon for CCS to experience mental health late effects long after their
completion of treatment. Stress and depressive symptoms are often seen among CCS and their
parents. These psychosocial issues can lead to engaging in risky health behaviors, as well as
deter CCS from seeking cancer-related follow-up care. Alternatively, many CCS report the
positive phenomenon of posttraumatic growth, i.e., the positive changes that occur as a result of
the cancer experience. According to Family Systems Theory, emotions and feelings between
2
family members are interconnected. Study 2 investigates the associations between parent mental
health indicators and child mental health outcomes. Furthermore, the literature suggests that an
ethnic disparity exists among mental health outcomes. For example, Hispanic parents report
higher posttraumatic stress and depressive symptoms as a result of their child’s cancer
experience than non-Hispanic parents. Study 2 also examined the moderating role of Hispanic
ethnicity in the relationship between parent and CCS mental health. Study 3 continues the line of
research presented in Study 2 to further address unique factors associated with parent and child
mental health associations among Hispanic-only families by addressing the role of acculturation
on these relationships.
The overall objective of this dissertation project was to identify some of the parent-level
factor that contribute to the health and well-being of childhood cancer survivors, and further
explore how Hispanic ethnicity and culture may influence these relationships.
3
Background and Significance
To date, childhood cancer is the second leading cause of death in young children and
adolescents (Curesearch for Children’s Cancer, n.d.) with over 15,000 new cancer cases in the
United States are attributed to children under the age of 19 years old (National Cancer Institute,
2017). Indeed, over the past 40 years, childhood cancer rates increased by 25% (American
Cancer Society [ACS], 2015). Fortunately, as technology and medical treatments advance each
year, so do the survival rates of CCS. Approximately 88%, over 13,000, of these newly
diagnosed cancer cases are expected to complete treatment and enter remission (ACS, 2015).
Among these survivors, up to 8,000 of these patients may experience cancer relapse, be
diagnosed with a secondary cancer, or undergo another medical issue related to their initial
cancer treatment (Curesearch, n.d.). This phenomenon is known as “late effects”. Late effects
include issues such as pain, fatigue, numbness, cognitive deficits, mental health issues and/or
reproductive issues impacting the survivor’s adult life in many ways (Stein, Syrjala, &
Andrykowski, 2008). CCS & young adult survivors (i.e. those diagnosed between 15-39 years of
age) report less access to information on infertility, diet and nutrition, than their adult cancer
survivor counterparts (Zebrack et al., 2013). Late effects also affect the body physically in terms
of growth and development, organ and tissue dysfunctions, and secondary tumors (ACS, 2017).
When compared to non-cancer survivor controls, older adult cancer survivors exhibit higher rates
of heart and lung disease, experience more pain, and are less active than the general population,
contributing to higher CCS obesity rates and general activity limitations (Keating, Nørredam,
Landrum, Huskamp, & Meara, 2005). Studies show that CCS are also at higher risk for mental
health disorders and report higher levels of anxiety, depression and posttraumatic stress in
adulthood when compared to the general population (Bruce, 2006; Hudson, et al., 2003; Stein, et
4
al., 2008). Undiagnosed mental health issues are known to increase the likelihood of substance
use in the general population, and contributes to the 8.9 million adults in the United States that
concurrently have a mental health illness and substance use disorder (Substance Abuse and
Mental Health Services Administration, 2009). Yet, a comprehensive review of CCS
psychosocial health reveals potential positive psychosocial outcomes in a response to the cancer
experience (Wakefield et al., 2010). These physical and emotional issues may also affect the
CCS quality of life they report deficits in other areas, such as lower levels of education and less
annual income when compared to their siblings (Hudson et al., 2003).
Childhood cancer survivorship and follow-up care. The five most common types of
cancer in children are Acute Lymphoblastic Leukemia (ALL), Brain & Central Nervous System
tumors, Neuroblastoma, Pediatric Kidney tumors and Lymphoma (Aquilino, 2012). Typical
treatments for these types of cancer involve surgery, radiation, chemotherapy or a combination
of two or more of these therapies (Buizer, de Sonneville, van den Heuvel-Eibrink, & Veerman,
2006). These treatments can affect the body physically in terms of growth and development,
organ and tissue dysfunctions, and secondary tumors. Additionally, late effects as a result of
these treatments can be severe depending on the severity and length of treatments. For example,
ALL accounts for one-third of all childhood cancer diagnoses (Aquilino, 2012). Children with
ALL lack the inability of the body to fight infections. Typical treatment for leukemia includes
chemotherapy which is linked to neurological dysfunctions (van der Plas et al., 2015). As a result
roughly 40 -60% of ALL survivors will suffer neurocognitive late effects during remission,
which may lead to subsequent academic, social and attention related issues among ALL
survivors (Buizer, et al., 2006; van der Plas, et al., 2015). More aggressive cancers are treated
with more aggressive therapies such as the treatment for Central Nervous System tumors which
5
may include a combination of surgery, radiation, and chemotherapy. In addition to long-term
complications from the treatment regimen, these patients report adversity in daily functioning,
reduced executive function skills and poor overall general health (Hudson, et al., 2003; Winter et
al., 2014).
In a large scale study of adults survivors of childhood cancers, Hudson and colleagues
(2013) found that 95.5% of CCS suffers some sort of chronic health condition by the time they
reach age 45 (Hudson et al., 2013). Most common were pulmonary problems (65.2%), hearing
loss (62.1%) endocrine or reproductive issues (62.0%) cardiac disorders (56.4%) and
neurocognitive impairment (48%) (Hudson, et al., 2013). For CCS who undergo chemotherapy
treatment, yearly oral exams and semi-annual dental screenings are recommended as
chemotherapy drugs may affect the cell lining in the mouth leading to painful sores and possible
oral infections (Children’s Oncology Group [COG], 2013; Yavuz & Bal Yılmaz, 2015).
Dermatological exams are also recommended for up to 10 years after chemotherapy treatments.
Survivors of radiation treatments are at high risk of a secondary cancer (e.g. skin cancer)
developing at the radiation site. Future bone related issues are also associated with radiation
patients (COG, 2013).
As a result of these late effects,(Armstrong et al., 2014) it is essential for CCS to engage
in lifetime follow-up care (COG, 2013). Yet, in adulthood less than one-third of CCS continue to
seek regular annual follow-up care (Nathan et al., 2008; Reulen et al., 2010). Follow-up care
studies indicate that living far away from a clinic, having public insurance and being non-White
are significant barriers to getting cancer-related follow-up care (Barakat, Schwartz, Szabo,
Hussey, & Bunin, 2012) Furthermore, older Hispanic CCS are found to be less likely to seek
cancer related follow-up care in the future (Milam et al., 2015). Given the likelihood that a CCS
6
will experience at least one physical or psychological late effect during their lifetime having
facilitators to promote annual follow-up care regimens is important.
Child and parent healthcare self-efficacy. Self-efficacy is defined as a person’s
perceived confidence in the ability to manage his or her needs. Healthcare self-efficacy is
primarily concerned with how much self-confidence a patient has to manage their own health
care needs (Bandura, 1994; Miller et al., 2017). Having greater self-confidence is an important
component to future care in other chronic populations. In the literature on chronic childhood
diseases, such as cystic fibrosis, diabetes, and asthma, patients with [specific illness]-related
healthcare self-efficacy report greater self-care, successful adherence, improved after-care, and
better quality of life (Bohanny et al., 2013; Hanna et al., 2012; Johnston-Brooks, Lewis, & Garg,
2002; Mancuso, Sayles, & Allegrante, 2009).
In general populations, parental self-efficacy plays an important role in shaping
children’s behavior both directly and indirectly (Steca, Bassi, Caprara, & Fave, 2011). In a
comprehensive literature review of parent self-efficacy and child behavior, Jones and Prinz
found that adolescents whose caregivers had high parental self-efficacy were less likely to
exhibit problem behaviors, such as delinquency, and less likely to engage in risky health
behaviors (T. L. Jones & Prinz, 2005). Yet, there is little empirical research on how parental
healthcare self-efficacy is associated with health-related behaviors of CCS.
Emerging adulthood is an important period for CCS. The transition from adolescence to
adult-centered healthcare usually happens around the age of 21. During this period, care switches
from pediatric specialists to adult specialty care. Studies show that these older CCS are less
likely to receive follow-up care than younger CCS (Milam, et al., 2015). A noted barrier to
transition care among patients with special health needs is the lack of readiness to transition
7
(Cooley & Sagerman, 2011). In order for successful transitions in cancer survivorship to occur,
individual readiness is more important than an arbitrary age parameter (Rosen, 1993). Yet, many
CCS find themselves transitioning to adult-centered care without the proper self-management
skills needed to manage their own care, resulting in a lower probability that they will engage in
future follow-up care practices (Cooley & Sagerman, 2011).
CCS mental health. Childhood cancer survivorship follow-up care guidelines
established by the Children’s Oncology Group (a consortium of cancer researchers, practitioners
and experts) recommend an annual psychological assessment for all CCS (COG, 2013). They
have noted that typical mental health issues for CCS after treatment include depressive
symptoms, stress, posttraumatic stress disorder, anxiety and suicide ideation (COG, 2013). This
could be due to the cognitive impairments as a result of surgery, tumor removal, and subsequent
cancer treatment affecting the CCS’s daily functioning abilities, which in turn, leads to greater
mental health issues (COG, 2013).
Among these mental health issues are depressive symptoms, which in CCS, are
associated with high anxiety, low self-esteem and poor quality of life (Ho Cheung William Li,
Chung, Ho, Chiu, & Lopez, 2012; H. C. William Li, Lopez, Chung, Ho, & Chiu, 2013).
Moreover, female CCS are found to be at a higher risk for depressive symptoms than the general
population (Cantrell & Posner, 2014). Perceived stress, another common mental health condition
in CCS, can often manifest in CCS who exhibit sexual dysfunctions and reproductive issues as a
result of their cancer, and can interfere with marital satisfaction, intimacy and sexual relations,
and quality of life (Arès, Lebel, & Bielajew, 2014; Joseph, Thibault, & Ruttle-King, 2006;
Sanders, 2009). Having poor perceived quality of life may lead to CCS making unhealthy
8
choices (e.g., poor dietary, decreased physical activity and substance abuse), all of which may
increase the likelihood of a experiencing a negative mental health late effect (Badr et al., 2013).
However, not all mental health outcomes in CCS are negative. A phenomenon called
posttraumatic growth (PTG) is commonly reported by childhood cancer survivors. PTG includes
the positive changes and personal growth that occur as a result of a traumatic or highly stressful
event (Arpawong, Oland, Milam, Ruccione, & Meeske, 2013). Barakat and colleagues (2006)
reported cancer survivors describing at least one positive outcome from their cancer experience
including positive changes within themselves, with their relationships and an optimistic future
outlook (Barakat, Alderfer, & Kazak, 2006). Some of the themes that underlie PTG include
meaning making, appreciation of life, greater self-awareness, closer relationships with family,
greater spirituality, and a desire to give back to the community (Duran, 2013). Gender and ethnic
differences in PTG find that female CCS report greater PTG (vs. males), and non-white persons
(e.g., Hispanic and African American survivors) report greater PTG than Caucasian CCS
(Arpawong, et al., 2013; Bellizzi et al., 2010; Yi, Zebrack, Kim, & Cousino, 2015). Furthermore,
PTG in CCS is related to higher psychosocial functioning (Arpawong, et al., 2013) including
emotional functioning (e.g., being afraid or worrying about the future) as well as the ability to
function well in a social and school environment (Davis et al., 2006; Varni, Seid, & Kurtin,
2001).
Parent mental health. The CCS cancer experience can also have a pronounced impact
on the mental health of parents. Caring for a child with cancer often increases parental stress, and
results in poor quality of life for parents (Witt et al., 2010). Parents of CCS report feeling more
depressive symptoms and anxiety then parents of matched non-CCS controls (Speechley & Noh,
1992). Parent stress is further increased when the CCS experiences neurocognitive late effects,
9
such as diminished executive functioning as a result of their child’s cancer experience. As in
their children, parents may also experience a positive benefit from their experience. In Barakat
and colleagues study (2006) of PTG among 150 families, a majority of fathers and mothers (80%
and 90%, respectively) experienced at least one positive outcome as a result of their child’s
cancer experience (Barakat, et al., 2006). In these same families, 85% of the adolescent CCS also
reported at least one positive consequence, suggesting that PTG co-occurs within the family unit.
Furthermore, in a qualitative review, parents of self-reported “close-knit” families felt more
cohesion and less stress during their child’s cancer treatment. In turn, these CCS reported greater
PTG and stronger attachments to parents and siblings after the cancer treatment (Duran, 2013).
Hispanic ethnic disparities. Roughly 24.4% of American children and adolescents
identify as Hispanic (Federal Interagency Forum on Child and Family Statistics, 2017), which
coincides with the estimated 25% of new childhood cases being attributed to Hispanic children
(Meeske et al., 2013). Unfortunately, the overall literature and research is disproportionate when
it comes to Hispanic CCS which neglects potential ethnic disparities in actual cancer
survivorship. Studies on follow-up care comparing Hispanic and Non-Hispanic CCS reveal that
Hispanic CCS are less likely to have attended a recent (within the previous two years) follow-up
care visit than White/Caucasian CCS (Milam, et al., 2015). Moreover, Hispanic CCS and their
families experience more negative mental health outcomes as a result of the cancer, than their
non-Hispanic counterparts. Recent reports reveal that Hispanic breast cancer survivors are more
likely to report stress and depression than non-Hispanics survivors (Apollo et al., 2007).
Furthermore, Hispanic parents of CCS report significantly higher rates of depression and
posttraumatic stress as a result of their child’s cancer experience than non-Hispanic parents of
CCS (Meeske, et al., 2013).
10
Hispanic acculturation discrepancy. Hispanic cancer survivorship is complex and often
dependent on a variety factors. Pinheiro et al (2011) found that in Texas, foreign-born cancer
patients of Mexican descent had a higher death risk than Whites if the cancer type was
considered to be moderately fatal, but a lower risk of death if the cancer type was considered a
highly fatal when compared to Whites (Pinheiro et al., 2011). Alternatively, US-born cancer
patients of Mexican descent had the same death risk as whites for cancers that were typically
highly fatal, and a higher risk of death for cancers with moderate fatal prognoses (Pinheiro, et al.,
2011). This may be due, in part, to cultural issues faced by non-native Hispanic families,
particularly those with US-born children. Studies show that foreign-born Hispanic parents, who
have a preference for their native language and are less acculturated to the US, report higher
levels of stress than US-born Hispanic parents (Meeske, et al., 2013; Sahler et al., 2013). As
perceived social support is a known protective factor against parental psychological distress in
both HCCS, and non-HCCS families alike (Speechley & Noh, 1992), the feelings of isolation
may heighted the distress experienced by non-native parents as they attempt to navigate their
child’s cancer treatment without the support of extended family and resources (Schaefer &
Pozzaglia, 1994).
As Unger et al. (2007) noted acculturation is more than simply measuring language-based
preferences. It is multidimensional and involves different aspects of retaining one’s ethnic
cultural practices while simultaneously accounting for how much the individual has adapted to
the lifestyle, manners and customs of the new (host) culture (Unger, Ritt-Olson, Wagner, Soto, &
Baezconde-Garbanati, 2007). Moreover, the two are not mutually exclusive as immigrants have
the ability to be high on both scales (e.g., bi-cultural) or low on both scales (e.g., lacking a
national identity) (Cuéllar, Arnold, & Maldonado, 1995).
11
A cultural discrepancy may occur when non-native parents of Hispanic children have not
yet adapted to their host country’s culture in the same manner and timeline as their child. For
these families, parents may be primarily rooted in their native cultural practices inviting conflict
with the child as he/she becomes more Anglo-American-oriented (Unger, Ritt-Olson, Wagner,
Soto, & Baezconde-Garbanati, 2009). Previous research suggests that adolescent Hispanic
identity is protective against engaging in risky health behaviors and depressive symptoms
(Lorenzo-Blanco, Unger, Ritt-Olson, Soto, & Baezconde-Garbanati, 2011; Unger, Ritt-Olson,
Wagner, et al., 2009). This could be attributed to shared family ethnic identity and cultural
values. As the discrepancy gap widens between Hispanic adolescents’ rate of acculturation and
their parents’ cultural preference, the risks of negative behaviors and mental health issues
increase (Lorenzo-Blanco, et al., 2011; Unger, Ritt-Olson, Wagner, et al., 2009).
Introduction to Dissertation Studies
Study 1 theoretical framework. According to Ajzen and Fishbein’s Theories of
Reasoned Action and Planned Behavior, behavioral intentions are the primary antecedents to
performance of a specific behavior (Ajzen, 1991; M. Fishbein, 1980). Intentions, in turn, are
influenced by behavioral, control and normative beliefs. Fishbein later expanded this theory to
include environmental and external influences, skills and abilities which influence behavioral,
control and normative beliefs (Martin Fishbein, 2008). The latest iteration of this framework is
known as the Integrative Model of Behavioral Prediction (IMBP). Under the IMBP framework,
external factors influence our belief systems, which are important antecedents of behavioral
intention. Intention, in turn, is a primary antecedent to actual behavior performance.
Similarly, Bandura (a pioneer in behavioral research) believes, “Most of the behaviors
that people display are learned, either deliberately or inadvertently, though the influence of
12
example” (Bandura, 1977). This is a key concept of his hallmark Social Learning Theory (SLT).
SLT posits that children learn from observing the actions of others, coding it into memory, and
retrieving the behavior pattern at a later time (Bandura, 1977). Parent modeling is included as a
potential external factor that contributes to a child’s level of self-efficacy (Whitbeck et al., 1997).
In turn, CCS healthcare-related self-efficacy is a construct found to be correlated to CCS
survivorship care (Miller, et al., 2017) Together, these theories underscore the importance of
external factors (such as parent role-modeling) on behavioral intention, which subsequently leads
to action.
Given the importance of life-time follow-up care behavior in childhood cancer survivors,
the goal of this research is to study a parent-level predictor on CCS outcomes. Specifically, this
study examines the relationships between parent cancer-related healthcare self-efficacy (PHSE),
CCS cancer-related healthcare self-efficacy (CHSE), CCS previous follow-up care behavior
(PREV) and intent to obtain future follow-up care (INTENT).
Study 1 research hypotheses. In Study 1 it was predicted that a relationship exists
between PHSE and INTENT, and that this relationship was fully mediated by CHSE and PREV.
Additionally, it was predicted that this relationship would be moderated by CCS age. A
conceptual model is presented in Figure 1-1.
H
1
: INTENT is positively associated with PHSE after controlling for covariates.
Model 1: Y =
10
+
11
X
1
+ COV+
1
H
1a:
This relationship will be strongest among younger (< 21) vs. older (21+) CCS.
Model 1
a
: Y =
10a
+
11a
X
1
+
12a
W
1
+
13a
(X
1
*W
1
)+ COV+
1a
H
2
: CHSE is positively associated with PHSE after controlling for covariates.
Model 2: Me
1
=
20
+
21
X
1
+ COV+
2
13
H
2a:
This relationship will be strongest among younger (< 21) vs. older (21+) CCS.
Model 2a: Me
1
=
20a
+
21a
X
1
+
22a
W
1
+
23a
(X
1
* W
1
)+ COV+
2a
H
3
: Previous Follow-up care (PREV) attendance is positively associated with PHSE after
controlling for covariates.
Model 3: Me
2
=
30
+
31
X
1
+ COV+
3
H
3a:
This relationship will be strongest among younger (< 21) vs. older (21+) CCS.
Model 3a: Me
2a
=
30a
+
31a
X
1
+
32a
W
1
+
33a
(X
1
* W
1
)+ COV+
3a
H
4
: CHSE is positively associated with INTENT after controlling for covariates.
Model 4: Y =
40
+
41
Me
1
+ COV+
4
H
4a:
This relationship will be strongest among older (21+) CCS vs. younger (< 21).
Model 4a: Y =
40a
+
41a
Me
1
+
32a
W
1
+
33a
(Me
1
* W
1
)+ COV+
4a
H
5
: PREV is positively associated with INTENT after controlling for covariates.
Model 5: Y =
50
+
51
Me
2
+ COV+
5
H
5a:
This relationship will be strongest among older (21+) CCS vs. younger (< 21) .
Model 5a: Y =
50a
+
51a
Me
2
+
52a
W
1
+
53a
(Me
2
* W
1
) + COV+
5a
H
6
: The relationship between PHSE and INTENT is fully mediated by CHSE and PREV after
controlling for covariates.
Model 6: Y =
60
+
61
X
1
+
62
Me
1
+
63
ME
2
+COV+
6
H
6a:
These relationships will be strongest among younger (< 21) vs. older (21+) CCS.
Model 6a: Y =
60a
+
61a
X
1
+
62
Me
1
+
63
ME
2
+
64a
W
1
+
65a
(X
1
* W
1
) +
COV+
6a
14
Figure 1-1.
Conceptual diagram for Study 1 depicting the mediating function of child healthcare self-
efficacy and previous follow-up care on the relationship between parent healthcare self-
efficacy and intent to seek follow-up care, as moderated by child’s age
PHSE
(X
1
)
AGE 21
(W
1
)
PHSE x
AGE21
(X 1*W 1)
PREV x
AGE21
(Me 2*W 1)
CHSE x
AGE21
(Me 2*W 1)
PREV
(Me
2
)
CHSE
(Me
1
)
INTENT
(Y)
15
Study 2 theoretical framework. First introduced by Murray Bowen, the Family Systems
Theory posits that individuals are highly connected to their family members emotionally
(Bowen, 1974). Feelings of one member can significantly impact the emotions and feelings of
other members within the family unit. For example, one member’s anxiety may place extra
perceived stress on the other household members (Kerr, 2000). Through a review of the
literature, Yi (2009) found Family Systems Theory to be a useful guide when examining the
impact of negative and positive cohesion among CCS and their families (Yi, 2009). Indeed,
families of cancer patients will experience cancer treatment and recovery together, and are often
known as “second order survivors”, a term coined to describe the importance that family
members have in helping each other adapt to the cancer experience (Institute of Medicine, 2008).
In addition to the influence of family cohesion is family culture. Ethnic differences in
family culture may explain current disparities in mental health outcomes. Hispanic parents of
CCS report significantly higher rates of depressive symptoms and posttraumatic stress as a result
of their child’s cancer experience than non-Hispanic parents of CCS (Meeske, et al., 2013;
Myers et al., 2014). Yet, Hispanics also report greater posttraumatic growth in response to their
cancer experience (Arpawong, et al., 2013; Smith, Dalen, Bernard, & Baumgartner, 2008).
Historically, Caucasian families tend to value an individualistic culture in which self-direction
and personal autonomy are considered important attributes (Santos, Varnum, & Grossmann,
2017). Conversely, the culture of Hispanic families is associated with a familial approach, which
values the interdependence of the family unit. This cultural approach views the members of
one’s family (both immediate and extended) as the primary social and emotional support system
(Sabogal, Marín, Otero-Sabogal, Marín, & Perez-Stable, 1987). Through the lens of Family
System’s Theory, the structure of familism may lend itself to greater sensitivity (vs. self-
16
direction/personal autonomy) in the changes of mental health outcomes (both positive and
negative) among its members. To date, little research has been conducted to examine the mental
health associations (and differences) between Hispanic CCS and their parents and non-Hispanic
CCS and their parents.
Study 2 research hypotheses. The purpose of this study was to examine the associations
between parent mental health and child mental health among families with a CCS. In addition,
this study examined the specific role of Hispanic ethnicity on these relationships. It was
hypothesize that indicators of negative parent mental health (e.g., perceived stress, depressive
symptoms, and posttraumatic stress) would be positively associated with indicators of negative
CCS mental health (e.g., perceived stress and depressive symptoms), and negatively associated
with indicators of positive CCS mental health indicators (e.g., posttraumatic growth and quality
of life). In addition, it was predicted that Hispanic ethnicity would moderate these relationships,
such that Hispanic families have stronger associations between parent and child mental health,
than non-Hispanic families. A conceptual model is presented in Figure 1-2.
H
1
: It was hypothesized that negative parent mental health would be positively associated
with negative CCS mental health indicators.
H
1
a: Parent stress, parent posttraumatic stress and parent depressive symptoms
would be positively associated with CCS stress.
Models: Y
1
=
10
+
11
X
1
+ COV+
1
Y
1
=
20
+
21
X
2
+ COV+
2
Y
1
=
30
+
31
X
3
+ COV+
3
H
1
b: Parent stress, parent posttraumatic stress and parent depressive symptoms
would be positively associated with CCS depressive symptoms.
17
Models: Y
2
=
40
+
41
X
1
+ COV+
4
Y
2
=
50
+
51
X
2
+ COV+
5
Y
2
=
60
+
61
X
3
+ COV+
6
H
2
: It was hypothesized that negative parent mental health will be negatively associated with
positive CCS mental health indicators.
H
2
a: Parent stress, parent posttraumatic stress and parent depressive symptoms
would be negatively associated with CCS posttraumatic growth.
Models: Y
3
=
70
+
71
X
1
+ COV+
7
Y
3
=
70
+
81
X
2
+ COV+
8
Y
3
=
70
+
91
X
3
+ COV+
9
H
2
b: Parent stress, parent posttraumatic stress and parent depressive symptoms
would be negatively associated with CCS quality of life.
Models: Y
4
=
100
+
101
X
1
+ COV+
10
Y
4
=
110
+
111
X
2
+ COV+
11
Y
4
=
120
+
121
X
3
+ COV+
12
H
3
: It was hypothesized that the relationships between negative parent mental health,
negative CCS mental health indicators and positive CCS mental health indicators will be
stronger among Hispanics than non-Hispanics.
H
3
a: Hispanic ethnicity would modify the relationship between parent stress,
parent posttraumatic stress and parent depressive symptoms and CCS
perceived stress.
Models: Y
1
=
130
+
131
X
1
+
132
Mo
1
+
133
(X
1
*Mo
1
)+ COV+
13
Y
1
=
140
+
141
X
2
+
142
Mo
1
+
144
(X
2
*Mo
1
)+ COV+
14
18
Y
1
=
130
+
131
X
3
+
132
Mo
1
+
133
(X
3
*Mo
1
)+ COV+
13
H
3
b: Hispanic ethnicity would modify the relationship between parent stress,
parent posttraumatic stress and parent depressive symptoms and CCS
depressive symptoms.
Models: Y
2
=
130
+
131
X
1
+
132
Mo
1
+
133
(X
1
*Mo
1
)+ COV+
13
Y
2
=
140
+
141
X
2
+
142
Mo
1
+
143
(X
2
*Mo
1
)+ COV+
14
Y
2
=
150
+
151
X
5
+
152
Mo
1
+
153
(X
5
*Mo
1
)+ COV+
15
H
3
c: Hispanic ethnicity would modify the relationship between parent stress,
parent posttraumatic stress and parent depressive symptoms and CCS
posttraumatic growth.
Models: Y
3
=
160
+
161
X
1
+
162
Mo
1
+
163
(X
1
*Mo
1
)+ COV+
16
Y
3
=
170
+
171
X
2
+
172
Mo
1
+
173
(X
2
*Mo
1
)+ COV+
17
Y
3
=
180
+
181
X
8
+
182
Mo
1
+
183
(X
8
*Mo
1
)+ COV+
18
H
3
d: Hispanic ethnicity would modify the relationship between parent stress,
parent posttraumatic stress and parent depressive symptoms and CCS
quality of life.
Models: Y
4
=
190
+
191
X
1
+
192
Mo
1
+
193
(X
1
*Mo
1
)+ COV+
19
Y
4
=
200
+
201
X
2
+
202
Mo
1
+
203
(X
2
*Mo
1
)+ COV+
20
Y
4
=
210
+
211
X
3
+
212
Mo
1
+
213
(X
3
*Mo
1
)+ COV+
21
19
Figure 1-2.
Conceptual model for influences of parental mental health on the mental health of
Hispanic and non-Hispanic childhood cancer survivors, as moderated by Hispanic
ethnicity
HISPANIC
ETHNICITY
(Mo
1
)
Depressive
Symptoms (Y
2
)
Perceived Stress
(Y
1
)
Pediatric Quality
of Life (Y
4
)
Posttraumatic
Growth (Y
3
)
Depressive Symptoms (X
3
) Posttraumatic Stress (X
2
) Perceived Stress (X
1
)
CCS
Positive
Mental
Health
CCS
Negative
Mental
Health
PARENT
Negative
Mental
Health
+
-
20
Study 3 theoretical framework. Family Systems Theory is a useful framework when
examining how thoughts, feelings and emotions affect family cohesion among Hispanic CCS
(HCCS) and their families as family cohesion is essential to the Hispanic culture and associated
with the value placed on the interdependence of the family unit (Sabogal, et al., 1987; Yi, 2009).
Szapocznik and Kurtine’s Theory of Bicultural Family Functioning further accounts for cultural
factors distinctive to the health and daily functioning of the Hispanic family (Cano et al., 2016;
Szapocznik & Kurtines, 1993). The authors recognized the importance of understanding the
complex relationship between the culture of origin, and the emerging American culture on
immigrant families and extended traditional cultural contexts into a multicultural platform
(Szapocznik & Kurtines, 1993). As adolescents acculturate to more Anglo-American
orientations, the family must redefine traditional roles (e.g., parents try to maintain family
cohesiveness and may feel their influence or leadership is not being heeded, while youth who
striving for more freedoms and autonomy may feel less support from their parents) (Szapocznik
& Kurtines, 1993). The difference between the rate of acculturation between parent and child is
referred to as acculturation discrepancy. This type of stress may impact the general functioning
of the family unit, and exacerbate mental health symptoms in HCCS (Cano, et al., 2016;
Szapocznik & Kurtines, 1993).
Study 3 research hypotheses. The purpose of the present study was to examine Hispanic
parent and survivor mental health associations, and the association of acculturation discrepancy
on these mental health relationships. It was hypothesized that parent-child acculturation
discrepancy (where the parent is more Hispanic oriented than the HCCS, and/or the HCCS is
more Anglo-American oriented than their parent) would be associated with higher levels of
negative mental health (among both HCCS and their parents) after controlling for demographic
21
and clinical covariates. Additionally, acculturation discrepancy would be inversely related to
positive mental health outcomes in HCCS after controlling for demographic and clinical
covariates. Finally, acculturation discrepancy would moderate the relationships between parent
and child mental associations after controlling for demographic and clinical covariates. See
Figure 1-3 for a conceptual presentation.
H
1
: Parent-child acculturation discrepancy scores would be negatively related to
HCCS posttraumatic growth and HCCS quality of life; and positively
related to parent depressive symptoms, parent perceived stress, parent
posttraumatic stress, HCCS depressive symptoms and HCCS perceived
stress.
Models: Y
1
=
10
+
11
Mo
1
+ COV+
1
Y
2
=
20
+
21
Mo
1
+ COV+
2
Y
3
=
30
+
31
Mo
1
+ COV+
3
Y
4
=
40
+
41
Mo
1
+ COV+
4
X
1
=
50
+
51
Mo
1
+ COV+
5
X
2
=
60
+
61
Mo
1
+ COV+
6
X
3
=
70
+
71
Mo
1
+ COV+
7
H
3
: Parent-child acculturation discrepancy scores significantly moderate the
associations between parent depressive symptoms; parent perceived stress,
parent posttraumatic stress, and HCCS posttraumatic growth, and HCCS
quality of life, HCCS depressive symptoms, HCCS perceived stress in that
higher discrepancy scores would result in stronger mental health
relationships (vs. when discrepancy scores are low).
22
Models: Y
11
=
80
+
82
X
1
+
83
Mo
1
+
84
(X
1
*Mo
1
)+ COV+
8
Y
12
=
90
+
91
X
2
+
102
Mo
1
+
93
(X
2
*Mo
1
)+ COV+
9
Y
13
=
100
+
101
X
3
+
102
Mo
1
+
103
(X
3
*Mo
1
)+ COV+
10
Y
21
=
110
+
111
X
1
+
112
Mo
1
+
113
(X
1
*Mo
1
)+ COV+
11
Y
22
=
120
+
121
X
2
+
122
Mo
1
+
123
(X
2
*Mo
1
)+ COV+
12
Y
23
=
130
+
131
X
3
+
132
Mo
1
+
133
(X
3
*Mo
1
)+ COV+
13
Y
31
=
140
+
141
X
1
+
142
Mo
1
+
143
(X
1
*Mo
1
)+ COV+
14
Y
32
=
150
+
151
X
2
+
152
Mo
1
+
153
(X
2
*Mo
1
)+ COV+
15
Y
33
=
160
+
161
X
3
+
162
Mo
1
+
163
(X
3
*Mo
1
)+ COV+
16
23
Figure 1-3.
Conceptual model for associations of parental mental health on the mental health of
Hispanic childhood cancer survivors, as moderated by acculturation discrepancy
ACCULTURATION
DISCREPANCY
(Mo
1
)
Pediatric Quality of
Life (Y
2
)
Posttraumatic
Growth (Y
1
)
Depressive
Symptoms (Y
4
)
Perceived Stress
(Y
3
)
Depressive Symptoms (X
3
) Posttraumatic Stress (X
2
) Perceived Stress (X
1
)
CCS
Negative
Mental
Health
CCS
Positive
Mental
Health
PARENT
Negative
Mental
Health
+
-
24
CHAPTER 2: METHODS
Data for all three proposed studies came from the Project Forward Cancer Survivorship
Study. The primary objective of the Project Forward study was to identify risk factors and
barriers to long-term cancer-related follow-up care in a cohort of Hispanic and Non-Hispanic
Childhood Cancer Survivors.
The Project Forward Cancer Survivorship Study
Participants
Initially, 515 cases were selected from the Los Angeles Cancer Surveillance Program, the
Surveillance, Epidemiology and End Results (SEER) cancer registry for Los Angeles County.
This program, under the guidance of the National Cancer Institute, gathers epidemiological data
on cancer incidence and survival rates, including patient demographics, diagnoses, and treatment
information (SEER, n.d.).
These patients were treated at either Children’s Hospital Los Angeles or at Miller Children’s
Hospital in Long Beach and included patients who were diagnosed with any type of cancer
(except children with Hodgkin’s Disease, as these cases were already included in another registry
study at the time). Inclusion criteria also included CCS who were 18 years old or younger at
diagnosis between the years of 2000-2007, and whose age in 2009 was between 14-25 years.
Of the original 515 cases, 45 were determined ineligible due to death, being out of the country,
cognitive or developmental impairment, or denial of cancer diagnosis. Of the 470 who were
eligible, 50% were recruited to participate in the study. The other half of those eligible either
refused participation, their parents refused their child’s participation, they were not able to be
contacted or they never responded.
The final sample yielded 235 CCS participants, ranging in age from 15 to 25 years old at
time of survey, of which 31% were diagnosed with leukemia, 19% brain or central nervous
25
system, 16% bone cancer, 5% lymphoma and 29% other types of cancer. This sample is
representative of the most common types of childhood cancers reported in 2015 (ACS, 2016).
Slightly over half of the CCS sample in the Project Forward study were females (50.6%) and
identified as Hispanic ethnicity (56.5%).
Parents of CCS were also recruited to participate in the study. A total of 173 parents
completed the parent portion of the Project Forward study. The sample ranged in age from 34 to
69 years old, and was predominately female (87.7%). Almost all of the participants in the parent
survey were biological parents, aside from two grandmothers and one stepmother completing the
parent survey as primary care providers. Please see Table 1-1 for a complete breakdown of CCS
and parent demographic data from the Project Forward Childhood Cancer Survivor Study.
Data Collection Procedure
A courtesy letter was mailed to the treating physician informing them of the study and asking
if they preferred their patient not to be contacted. None requested patient exclusion. Two weeks
following the physician letter, postcards were sent to CCS introducing them to the study. Two
weeks following the postcard, study materials were mailed. After 3 weeks of no response, CCS
were contacted by phone and subsequent mailings.
Informed consent was given by the CCS if they were over 18 years old, or parental consent
(if under 18) with child assent. Parents of participants were also invited to participate in the
study. If the CCS was under the age of 18, study materials for both the patient survey and the
parent survey were mailed directly to the parent. If the CCS was over the age of 18, they
received the study materials and were then asked permission to contact a parent for inclusion in
the study. If the CCS gave permission, a parent survey was sent to the parent. In total, 173
parents participated in the project.
26
The survey took approximately 30-45 minutes to complete and was designed not to exceed
an 8
th
grade reading level. The participants primarily responded by mail, with 12 CCS
responding online, and 4 CCS responding via phone. All participants were given a $20 gift card
in appreciation of their time and were entered into a lottery to win a $300 prize. All procedures
for this study were approved by Institutional Review Boards for the California Committee for the
Protection of Human Subjects, California Cancer Registry, the University of Southern California,
Children’s Hospital of Los Angeles, and Miller Children’s Hospital Long Beach.
Table 1-1.
General demographic data on all Project Forward Childhood Cancer Survivor Study
participants
Characteristic
CCS
(n = 235)
Parent
(n = 173)
M (SD) / Percentage M (SD) / Percentage
Age (years) M = 19.8(2.78 ) M = 48.8(6.63)
Sex
Males 49.4 12.3
Females 50.6 87.7
Ethnicity
Asian 8.9 4.6
Black 5.5 6.4
Hispanic 56.5 57.2
Other 3.0 1.2
White 26.4 30.6
Note. M = Mean; SD = standard deviation.
Measures
Survey measures the dissertation variables of interest are described briefly below. Copies
of complete survey measures are located in Appendix.
Previous follow-up care. CCS reported their previous follow-up care behavior by
answering the question, “When did you last see a doctor for cancer related follow-up care?”
27
Responses were coded dichotomously to reflect the CCS having received follow-up care within
the past 2 years (1) or follow-up care longer than 2 years ago (0).
Intent to seek follow-up care. CCS intent to seek follow-up care in the next 2 years was
also evaluated by a single item asking the participants, “During the next 2 years, what are the
chances that you will go for a cancer follow-up visit?” CCS responded using a 4-pt scale ranging
from none/not sure to likely/very likely. The INTENT variable was coded dichotomously either
high intent (likely/very likely) or low intent (not sure/not likely) (Milam, et al., 2015).
Healthcare Self-efficacy Scale. Both parent healthcare self-efficacy and CCS healthcare
self-efficacy were adapted from the Stanford Patient Education Research Center Chronic Disease
Self-Efficacy scales (Lorig, Stewart, Ritter, González, & et al., 1996). This scale addressed three
different aspects of confidence including how confident the parent (or CCS) was in asking doctor
questions, how confident they were in making appointments, and how confident they were that
they could get cancer related care in the next two years, if needed. Responses ranged on a 3-point
Likert-type from not confident/not sure, somewhat confident, or very confident. Values ranged
from 0 – 6. For the parent scale, responses ranged on a 5pt Likert-type scale Not Very, A Little
Bit, Moderately, Quite a bit, and Extremely. Values ranged from 0 – 4. Scores were summed to
create a composite self-efficacy score for both parent and child.
Posttraumatic Growth Inventory – SF. The posttraumatic growth inventory was
measured by the PTGI short form (Cann, et al., 2010). This is a 10-item measure is a shortened
form of the original PTG questionnaire by Tedeschi and Calhoun (1996). This measure reflects
different areas of positive personal growth as a result of a traumatic experience and includes five
subscales: Relating to Others (for example “I have a greater sense of closeness with others”),
New Possibilities “I established a new path for my life”, Personal Strength “I am able to do
28
better things” , Spiritual Change “I have a better understanding of spiritual matters”, and
Appreciation of Life “I have a greater appreciation for life”, as well as an overall composite
score. Participants rated to what degree their cancer experience had influenced their lives on a 6-
point Likert-type rating scale ranging from 0 (“I did not experience this change as a result of my
crisis.”) to 5 (“I experienced this change to a very great degree as a result of my crisis.”). A PTG
total mean score was calculated from all 10 items, where higher scores indicate more growth
from the traumatic experience. Mean scores for each of the five subscales were also created,
consisting of two items each.
Pediatric Quality of Life Scale. The measure for pediatric quality of life was developed
by Varni, Seid and Kurtin (2001) for the purpose of measuring several aspects of psychosocial
and health functioning experienced by adolescents and young adults (Varni, et al., 2001). The
PedsQL is a 23-item measure that includes several aspects of psychosocial and health
functioning experienced in the past month. Physical Health (“It is hard for me to do sports
activity or exercise”), Emotional Functioning (“I have trouble sleeping”), Social Functioning (“it
is hard for me to keep up with my peers”), and School functioning (“Other teens tease me”).
Responses were made on a 5-point Likert-type rating scale ranging from never to almost always.
A total mean composite score of all the items was calculated to create an overall Psychosocial
Health Summary Score. Mean scores for each of the four subscales, Physical Health (8 items),
Emotional Functioning (5 items), Social Functioning (5 Items), and School Functioning (5
items), were also created.
Center for Epidemiological Studies Depressive Scale. This measure of depressive
symptoms, known as CESD, is a 20-item measure comprised items taken from a variety of
depressive symptoms scales (Radloff, 1977). In order to capture current depressive symptoms,
29
participants are asked if they have felt a particular way in the past 7 days. Items include 16
negatively worded questions, for example “In the past week…I had trouble shaking off sad
feelings” and four positively worded items, “In the past week…I felt that I was just as good as
other people” which are reverse coded for analyses. Responses range from 0 meaning they rarely
feel this way (0 – 1 days in the past week) to 3 meaning almost the entire week (5 -7 days in the
past week). A total composite score was calculated by summing all 20 items of the scale for a
possible score between 0 to 80 points. This measure comprised of four subscales. Negative
Affect (7 items) measures the amount to depressive symptoms one is feeling, such as loneliness,
or having the blues. Positive Affect (4 items) refers to happiness and hope. Interpersonal
Problems (2 items) accounts for negativity among relationships, and Somatic Symptoms (7
items) captures activity related aspects of depressive symptoms, such as eating and sleeping
issues (Radloff, 1977). Each subscale received a summed score.
Perceived Stress Scale. Parent and CCS perceived stress was created by Cohen,
Kamarck & Mermelstein (1983) measures the degree to which an individual perceives the
current stressfulness in their lives (Cohen, Kamarck, & Mermelstein, 1983). The PSS-4 contains
four items designed to measure the amount of perceived stress experienced within the past
month. The scale has two negatively worded items (such as, felt that you were unable to control
the important things in your life), and two positively worded items (such as felt confident about
the ability to handle your problems) that are reverse coded for analysis. Answer responses on a
5-point Likert-type scale ranged from 0 = Never, indicating the participant has not felt this way
at all in the past 30 days, to 4 = Very Often, which indicates that participant has felt this way for
at least half of the month (15+ days). Scores were summed to create a total perceived stress score
for each participant with a possible range from 0 to 16 points.
30
Impact of Event Scale. Posttraumatic Stress Disorder in parents was measured using the
Impact of Event Scale-Revised (IES) measure by Weiss and Marmar (1997). The scale used in
this study was designed to capture current distressing feelings (e.g., I had waves of strong feeling
about it), somatic issues (e.g., I had trouble falling asleep), physical symptoms (e.g., sweating or
a pounding heart), and other stressors that had been experienced in the past week as a direct
result of their child’s cancer situation (Weiss & Marmar, 1997). Parents indicated to what degree
these difficulties bothered them on a scale from 0 (not at all) to 4 (extremely). Items were
summed to create scores in the possible range from 0 to 88 points, than averaged to create
individual mean scores. The IES-R also includes three subscales: Avoidance (8 items), Intrusions
(8 items) and Hyperarousal (6 items). These scores for these subscales were also created as mean
scores as recommended by the authors to allow for cross comparisons on a scale from 0 – 4
(Weiss & Marmar, 1997).
Acculturation Rating Scale for Mexican Americans –II. This acculturation scale
(ARSMA-2) measures how much an individual identifies or is oriented towards to Hispanic
and/or Anglo-American culture (Cuéllar, et al., 1995). It is important to note that this scale was
only given to Project Forward participants who had identified as being Hispanic or Latino.
Participants answered a variety of question regarding their language preferences in print
material, television viewing, etc. as well as their friendship preferences. Items include “I enjoy
speaking Spanish” and “My friends are of Anglo-American or White origin”. The scale is
divided into two distinct orientations: Hispanic Orientation (6 items) and Anglo-American
Orientation (7 items). Answer possibilities ranged from 1 for Not at all, to 5 for almost
always/extremely often. Items were summed and then averaged to yield a mean Hispanic
31
Acculturation and a mean Anglo-American Acculturation (possible scores from 0 – 4) for each
HCCS.
Acculturation discrepancy measure. The acculturation discrepancy measure was
calculated using the procedure outlined in Unger, Ritt-Olsen, Soto and Baezconde-Garbanati
(2009) for both scales of the ARSMA-2 for parent and child (Unger, Ritt-Olson, Soto, &
Baezconde-Garbanati, 2009). These acculturation scores were standardized (M = 0, SD = 1) and
two separate discrepancy scores were calculated. First, an Anglo-American orientation
discrepancy scale was calculated by subtracting the parent’s Anglo-American score from the
HCCS’s Anglo-American score. The higher the Anglo-American discrepancy score, the more
Anglo-American-oriented the HCCS is than their parent. A second Hispanic orientation
discrepancy score was subtracting the HCCS’s Hispanic score from the parent’s Hispanic score.
The higher the Hispanic discrepancy score, the more Hispanic-oriented the parent is than the
HCCS (Unger, Ritt-Olson, Soto, et al., 2009).
Covariates. Demographic, parent and family, clinical and system level factors addressed
in this study included age, sex, ethnicity (Hispanic/non-Hispanic), socio-economic status,
parent’s age, parent’s sex, living at home status, cancer diagnoses, cancer treatment intensity,
number of years since diagnoses, cancer treatment hospital site, and insurance status.
Information regarding the participant’s age, sex, cancer diagnosis, years since diagnosis, and
socio-economic status was obtained through data provided through the SEER database. Socio-
economic status provided by SEER was based on quintiles created from neighborhood-specific
census block data at the residence when diagnosed with 1 being in the lowest 20% SES quintile
and 5 being the among the top 20% in SES. CCS self-reported insurance status (none/don’t
know, public or private). CCS insurance status was dichotomized into any insurance versus
32
no/unknown insurance to reflect the unstable nature of healthcare in this current political climate.
CCS also self-reported their living arrangements (at home vs. elsewhere) at the time they
completed the survey. Treatment intensity was calculated using the Intensity of Treatment Rating
Scale 2.0 (ITR-2), which uses cancer registry data and medical chart reviews to categorized
treatments into four levels of intensity: 1 = least intensive (e.g., surgery only), 2 = moderately
intensive (e.g., chemotherapy or radiation), 3 = very intensive (e.g., two or more treatment
modalities), 4 = most intensive (e.g., relapse protocols) (Werba et al., 2007). Finally, age was
dichotomized at 21 years old to reflect the period of transitioned from pediatric to adult
survivorship care (Milam, et al., 2015).
Statistical Analysis
All descriptive and regression analyses for Studies 1, 2, and 3 were conducted using SAS
statistical software (version 9.2) (SAS Institute; Cary, NC).
Descriptive characteristics. Descriptive statistics were calculated for all variables of
interest and covariates. Point-biserial correlations and chi square frequencies among the
dependent variable, and independent variables were tested against sociodemographic variables
for CCS (age, gender, SES, ethnicity, treatment intensity, time since diagnoses, insurance status,
and living arrangement status), as well as sociodemographic variables for parents (age, gender
and ethnicity) to identify potential covariates. Certain covariates, such as age, gender, SES and
insurance have theoretical importance to the research and were forced into the regression models
regardless of having a significance level of p < .10. All other variables with a significant
association at the .10 probability threshold were included in the multivariable models.
Missing data. One CCS did not answer the intent to seek follow-up care, and one CCS
did not answer the previous follow-up care question. As a result those cases were dropped from
33
models using those variables in the final analysis using list-wise deletion for Study 1 only. All
CCS completed the healthcare self-efficacy measure; however, five of the parents only answered
two of the three PHSE questions. Since this missing data amounted to less than 5% of the entire
sample, mean imputation was used to obtain scores for these parent participants for the
regression analyses (Dong & Peng, 2013).
34
CHAPTER 3: STUDY 1
Childhood Cancer Survivorship: The associations between parent healthcare self-efficacy,
child healthcare self-efficacy and follow-up care behavior
Rhona I. Slaughter, Ann S. Hamilton, Julie A. Cederbaum, Jennifer B. Unger,
Lourdes Baezconde-Garbanati, & Joel E. Milam
Department of Preventive Medicine
Keck School of Medicine
University of Southern California
Contact:
Rhona I. Slaughter
Department of Preventive Medicine, Keck School of Medicine
2001 N. Soto St., 3
rd
Floor
Los Angeles, CA 90032
Phone (714) 732-9864
Email: rslaught@usc.edu
35
Abstract
Childhood cancer survivors (CCS) commonly experience secondary medical events in response
to their initial cancer treatment(s). Known as late effects, these issues often occur many years
after the patient enters remission. As a result, lifetime cancer-related follow-up care is
recommended for all CCS. Yet, as a CCS ages the likelihood of attending future follow-up care
decreases. A critical time period for survivorship care occurs during the transition from child-
centered to adult-centered care, which typically occurs around the age of 21. According to
behavioral theories, intention is the antecedent to performance. Predictors of intensions include
having the perceived ability to perform the behavior, which can be influenced by external
factors. Furthermore, engaging in the previous behavior is also a reliable predictor for future
intent to engage in the same behavior. The current study examined the relationship between
intent to seek follow-up care with (1) parent cancer-related healthcare self-efficacy, (2) child
healthcare self-efficacy, and (3) previous follow-up care visits in a sample of 129 parent/CCS
dyads from the Los Angeles area. CCS ages ranged from 15-24 years of age. PHSE was
significantly associated with INTENT. This relationship was moderated by CCS age, with
stronger associations occurring among younger CCS (under 21, vs 21+). CHSC was found to be
more important among CCS age 21 years and older. Tailored interventions that are designed to
enhance CHSE before age 21 may be beneficial for improving the transition to adult-centered
survivorship care and promoting adherence to long-term cancer-related follow-up care
guidelines.
36
Introduction
Cancer is the second leading cause of death in young children and adolescents
(Curesearch, n.d.); in 2014, over 15,000 new cancer cases in the United States were attributed to
children under the age of 19 years (National Cancer Institute, 2017). Over the past 40 years,
childhood cancer rates increased by 25% (ACS, 2015). However, so have survival rates of
Childhood Cancer Survivors (CCS). This is attributed to the consistent advancement of
technology and medical treatments. Today, approximately 88% of children who are diagnosed
with new cancer cases are expected to complete treatment and enter remission (ACS, 2015),
resulting in over 13,000 children who will enter survivorship each year in the United States
(ACS, 2015).
It is estimated that 60% of CCS will experience future medical problems, or late effects,
as a result of their cancer treatment such as secondary cancers in adulthood, issues with infertility
and reproductive health, and/or long-term psychological problems (Curesearch, n.d.). Late
effects can affect the body physically in terms of growth and development, organ and tissue
dysfunctions, and secondary tumors. Late effects can also affect the mind through cognitive
impairments and psychosocial issues (ACS, 2017). Beyond a relapse or secondary cancer, late
effects can include issues such as pain, fatigue, numbness, cognitive deficits, mental health
issues and/or reproductive issues, thus impacting the survivor’s adult life in many ways (Stein, et
al., 2008). In addition to physical health, participants in the Childhood Cancer Survivor Study
(CCSS) reported decreased quality of life as proxied through deficits in levels of education and
annual income when compared to siblings (Hudson, et al., 2003). In addition to the physical and
social outcomes associated with late effects, some studies show that CCS are at higher risk for
37
mental health disorders reporting high levels of anxiety, depression and posttraumatic stress in
adulthood (Bruce, 2006; Hudson, et al., 2003; Stein, et al., 2008).
Typical cancer treatments involve surgery, radiation, chemotherapy or a combination of
two or more of these therapies and late effects that result from these therapies can be more severe
depending on the severity and length of treatments. As a result, it is essential for CCS to engage
in lifetime follow-up care (Armstrong, et al., 2014; Group, 2013). Yet, in adulthood, less than
one-third of CCS continue to seek regular annual follow-up care (Nathan, et al., 2008; Reulen, et
al., 2010). Take for example, Acute Lymphoblastic Leukemia, which accounts for 1/3 of all
childhood cancer diagnoses (Aquilino, 2012). Typical treatment for leukemia includes
chemotherapy, which is associated with are neurological dysfunctions. As a result, 40-60% of
ALL survivors will suffer neurocognitive late effects during remission, which may lead to
subsequent academic problems and attention related issues among ALL survivors (Buizer, et al.,
2006; van der Plas, et al., 2015). Another example is the treatment for brain & central nervous
system tumors, which may include surgery, radiation, and/or chemotherapy. Some long-term
complications from this treatment regimen are associated with reduced executive function skills
and poor overall general health.
As a result of these potential late effects, it is essential for CCS to engage in lifetime
follow-up care (Armstrong, et al., 2014; Group, 2013). Follow-up care studies indicate that living
far away from a clinic, and having public insurance are significant barriers to CCS obtaining
cancer-related follow-up care (Barakat, et al., 2012). Additional barriers to long-term follow-up
care include ethnicity and age (e.g. older Hispanic CCS) and the perceived inability to manage
their care (Casillas et al., 2011; Milam, et al., 2015). This perceived inability may stem from
lower CCS healthcare self-efficacy.
38
Healthcare self-efficacy is primarily concerned with how much self-confidence patients
have in managing their own health care needs (Bandura, 1994; Miller, et al., 2017). In fact,
having greater self-confidence is an important component to future care in other chronic
populations. In the literature on chronic childhood diseases, such as cystic fibrosis, diabetes, and
asthma, patients with [specific illness]-related healthcare self-efficacy is associated with greater
self-care, successful interventions in adherence, improved after-care regimens, and better quality
of life (Bohanny, et al., 2013; Hanna, et al., 2012; Johnston-Brooks, et al., 2002; Mancuso, et al.,
2009).
In general populations, parental self-efficacy plays an important role in shaping
children’s behavior both directly and indirectly (Steca, et al., 2011). In a comprehensive
literature review of parenting self-efficacy and child behavior, Jones and Prinz
29
found that
problem behavior in adolescents, such as delinquency and substance use, was less likely when
their parents had high general parenting self-efficacy (T. L. Jones & Prinz, 2005). Yet, to date
there is no published literature on how parenting healthcare self-efficacy is associated with CCS
follow-up behavior or healthcare self-efficacy.
Emerging adulthood (typically between 18-25 years old) (Millar, Patterson, & Desille,
2010) is an important period for CCS. Studies show that older CCS are less likely to receive
follow-up care than younger CCS (Milam, et al., 2015). The transition from adolescence to adult-
centered healthcare usually happens around the age of 21. During this period, care switches from
pediatric specialists to adult specialty care. A noted barrier to transition care among patients with
special health needs is the lack of readiness to transition (Cooley & Sagerman, 2011). Current
literature purports that in order for successful transitions in cancer survivorship to occur,
individual readiness is more important than an arbitrary age parameter (Rosen, 1993). Yet, many
39
CCS find themselves transitioning to adult-centered care without the proper abilities to manage
their own healthcare needs, resulting in a lower probability that they will engage in future
follow-up care practices (Cooley & Sagerman, 2011).
In Ajzen and Fishbein’s earlier work behavioral intentions precede actual performance
(Ajzen, 1991; M. Fishbein, 1980). These intentions are influenced by behavioral, control and
normative beliefs. Fishbein later expanded this theory (newly titled the Integrative Model of
Behavioral Prediction [IMBP]) to include the influence of environmental and external influences
(Martin Fishbein, 2008). Bandura’s Social Learning Theory posits that children learn behavior
through the modeling and observation (for example imitating a role model) may be one such
external factor that influences CCS behavior (Bandura, 1977). Current research demonstrates
that parent modeling contributes to their child’s level of self-efficacy (Whitbeck, et al., 1997). In
turn, CCS healthcare-related self-efficacy is a found to be a correlate of CCS survivorship care
(Miller, et al., 2017).
Given the importance of lifetime follow-up care behavior in childhood cancer survivors,
the goal of this research was to study parent-level predictors on CCS-level outcomes.
Specifically, this study aimed to examine the relationships between PHSE, CHSE, PREV and
INTENT as well and potential modification by CCS age in the following hypotheses.
H
1
: INTENT is positively associated with PHSE after controlling for covariates.
H
1a:
This relationship will be strongest among younger (< 21) vs. older (21+) CCS.
H
2
: CHSE is positively associated with PHSE after controlling for covariates.
H
2a:
This relationship will be strongest among younger (< 21) vs. older (21+) CCS.
H
3
: PREV is positively associated with PHSE after controlling for covariates.
H
3a:
This relationship will be strongest among younger (< 21) vs. older (21+) CCS.
40
H
4
: CHSE is positively associated with INTENT after controlling for covariates.
H
4a:
This relationship will be strongest among older (21+) CCS vs. younger (< 21).
H
5
: PREV is positively associated with INTENT after controlling for covariates.
H
5a:
This relationship will be strongest among older (21+) CCS vs. younger (< 21) .
H
6
: The relationship between PHSE and INTENT is fully mediated by CHSE and PREV
after controlling for covariates.
H
6a:
These relationships will be strongest among younger (< 21) vs. older (21+) CCS.
41
Method
Participants and Procedure. The data from for this study comes from the original
Project Forward study (as described elsewhere) (Milam, et al., 2015). For these analyses, we
began with N = 173 parents and their children (henceforth referred to as a ‘dyad’). There
were 13 cases where the parent participated, but not the CCS. These cases were excluded
from the analysis. Part of the inclusion criteria for the dissertation studies was for the CCS to
have completed treatment for at least two years. Of the 160 complete dyads, 31 pairs were
excluded because the CCS had not completed their last cancer treatment two or more years
from the time of survey. This restriction was due to the focus of this research on long-term
follow-up care practices. Thus, the analytic subset for this study included 129 dyads of
parents (M
age
= 49.0 (6.84) ; 87.6% female) and CCS (M
age
= 19.5 (2.96); 49.9% female).
The CCS in this subset self-identified as 52.7% Hispanic, and 47.3% non-Hispanic (which
included 34.1% non-Hispanic White, 5.4% African American, 3.9% Asian, and 3.9% other).
In order to determine if demographic characteristics of the analytic sample differed from
those of excluded participants, comparisons were calculated. Comparisons between the
current study participants and the excluded participants (see Table 3-1) revealed included
CCS were slightly younger than the excluded participants [M
study
= 19.46 (2.96) vs. M
excluded
= 20.2 (2.48) p = .04]. It is possible parent participation of the younger CCS was indirectly
effected by the data collection procedures as CCS under the age of 18 were required to obtain
parental consent prior to participation. No significant difference was found between excluded
participants and current study participants on any other demographic variable. For theoretical
purposes, all main effect models included age and time since diagnosis as covariates
regardless of their association with the variables of interest.
42
Measures. Survey measures are described briefly below. A table of complete survey
measures is located in the Appendix section.
Previous follow-up care. CCS reported their PREV behavior by answering the question,
“When did you last see a doctor for cancer related follow-up care?” Responses were coded
dichotomously to reflect the CCS having received FU care within the past 2 years (1) or follow-
up care longer than 2 years ago (0).
Intent to seek follow-up care. INTENT (in the next 2 years) was also evaluated by a
single item asking the participants, “During the next 2 years, what are the chances that you will
go for a cancer follow-up visit?”. CCS responded using a 4-pt scale ranging from none/not sure
to likely/very likely. The INTENT variable was coded dichotomously either high intent
(likely/very likely) or low intent (not sure/not likely) (Milam, et al., 2015).
Healthcare self-efficacy. PHSE and CHSE were adapted from the Stanford Patient
Education Research Center Chronic Disease Self-Efficacy scales (Lorig, et al., 1996). This scale
addressed three different aspects of confidence including how confident the parent (or CCS) was
in (1) asking doctor questions, (2) making appointments, and (3) that they could get cancer
related care in the next two years, if needed. Responses ranged on a 3-point Likert-type from not
confident/not sure, somewhat confident, or very confident. Values ranged from 0 – 6. For the
parent scale, responses ranged on a 5-point Likert-type scale Not Very, A Little Bit, Moderately,
Quite a bit, and Extremely. Values ranged from 0 – 4. Scores were summed to create a composite
self-efficacy score for both parent and child. Cronbach’s alpha for this sample was .70 for PHSE,
and .64 for CHSE.
Covariates. Demographic, parent and family, clinical and system level factors addressed
in this study including age (>21 years vs. < 21 years), sex (female vs. male), ethnicity (Hispanic
43
vs. non-Hispanic), socioeconomic status (separated into quintiles), parent’s age (continuous),
parent’s sex (female vs. male), living at home status (yes vs. no), cancer diagnoses, cancer
treatment intensity (see below), number of years since diagnoses (>2 years vs. < 2 years), and
cancer treatment hospital site (CHLA vs Miller). Information regarding the participant’s age,
sex, cancer diagnosis, years since diagnosis, and socioeconomic status were obtained from the
Los Angeles Cancer Surveillance Program, also known as SEER for Surveillance, Epidemiology
and End Results database. Socioeconomic status was based on quintiles created from
neighborhood-specific census block data at the residence when diagnosed with 1 being in the
lowest 20% SES quintile and 5 being the among the top 20% in SES. Treatment intensity was
calculated using the Intensity of Treatment Rating Scale 2.0 (ITR-2), which uses cancer registry
data and medical chart reviews to categorized treatments into four levels of intensity: 1 = least
intensive (e.g., surgery only), 2 = moderately intensive (e.g., chemotherapy or radiation), 3 =
very intensive (e.g., two or more treatment modalities), 4 = most intensive (e.g., relapse
protocols) (Werba, et al., 2007). Finally, age was dichotomized at 21 years old, as this is when
survivors are transitioned from pediatric to adult survivorship care (Milam, et al., 2015).
Statistical analysis. Descriptive statistics were calculated for all variables of interest and
covariates. Point-biserial correlations and chi-square frequencies among INTENT, PREV, PHSE,
CHSE, and sociodemographic variables for CCS (age, gender, SES, ethnicity, treatment
intensity, time since diagnoses, and living arrangement status), as well as sociodemographic
variables for parents (age, gender and ethnicity) were examined to identify potential covariates.
Covariates with significance level of p < .10 were retained in multivariable models. Some
variables that did not reach the .10 threshold were forced into models due to their theoretical
importance (identification of these theoretical variables can be found in the results section). One
44
CCS did not answer the intent to seek follow-up care, and one CCS did not answer the previous
follow-up care question. As a result those cases were dropped from models using those variables
in the final analysis using list-wise deletion. All CCS completed the healthcare self-efficacy
measure; however, five of the parents only answered two of the three PHSE questions. Since this
missing data amounted to less than 5% of the entire sample, mean imputation was used to obtain
scores for these parent participants for the regression analyses (Dong & Peng, 2013). Multiple
regression mediation and moderation models in this dissertation followed the Baron and Kenny
paradigm and were performed using SAS statistical software (Version 9.2) (SAS Institute, Cary,
NC, USA) (Baron & Kenny, 1986; Preacher, Rucker, & Hayes, 2007).
Results
Descriptive statistics. Table 3-2 provides a complete list of CCS demographics. Parent
participation was predominantly female (87.6%), and were an average age of 49.0(6.48) years
old. Almost 56 % of parents identified as Hispanic. The sample of 129 CCS (M
age
= 19.5 (2.96)
yrs.) was split almost equally by gender (female = 50.4%) and slightly over half of participants
identified as Hispanic ethnicity (52.7%). Among CCS, 79.8% CCS still lived at home and 86.1%
received their treatment at Children’s Hospital of Los Angeles. The average years since initial
diagnoses were 7.75 (2.03) and more CCS reported having some type of insurance coverage than
not having any coverage (69.1% vs 30.1%, respectively (p < .05)).
Bivariate Correlations. Next, bivariate associations among the demographic variables
and the main study variables were assessed for potential covariates as well as multicollinearity
(see Table 3-3). CCS sex, living at home, SES, treatment intensity and health insurance status
were significantly associated with intent to seek follow-up care (all p’s < .10) and were
controlled for the subsequent models. Although not significantly correlated with INTENT, time
45
since diagnoses and Hispanic ethnicity were added to the model as covariates for theoretical
consideration as these variables are related to follow-up care. Descriptive statistics among the
main variables of interest revealed that a majority of CCS had a participated in a prior follow-up
care visit (72.7%), and two-thirds indicated that they intended to seek follow-up care in the next
two years (67.0%). Predictor variables PHSE, CHSE and PREV were significantly associated
with each other (all p’s < .05) and significantly associated with INTENT (all p’s < .01).
Multivariate regression model outcomes. Multivariate logistic regression models were
conducted controlling for CCS sex, Hispanicity, SES, treatment intensity, time since diagnosis,
living at home, and insurance status.
Hypothesis 1. To test the first hypotheses, a main effect logistic regression model for
PSHE was performed. The results indicated that PHSE was not a significant predictor of
INTENT after controlling for all covariates (OR = 1.007, CI: 0.839-1.207). To test the second
part of the hypothesis (H
1a
), a moderation model with age 21 +/- by PHSE on the INTENT
outcome was conducted including the same covariates. The results revealed a significant
interaction between PHSE and younger vs older CCS ( = -0.58 p = .042). Simple post hoc
stratification analysis was conducted to reveal that PHSE and INTENT were only associated
among younger CCS (OR = 1.462, CI: 1.091-1.958), and not significant for older CCS (OR
= .943, CI: 0.745-1.193).
Hypothesis 2. According to Barron and Kenny mediation protocols, further analysis of a
model stops if there is no significant direct pathway in the first model (Baron & Kenny, 1986).
Since PHSE and INTENT were not significant in the overall model with all participants, no
further analyses were conducted regarding the mediation hypotheses (H
2
through H
6
) among the
whole sample. However, a significant interaction occurred between PHSE and CCS age on
46
INTENT, revealing a significant association between PHSE and INTENT among the younger
CCS only (H
1a
) Therefore, subsequent mediation analysis (H
2
through H
6
) was conducted using
the sub-sample of under 21 year old CCS (N = 82). Among this smaller subset, bivariate
correlations between SES, treatment intensity, and living at home were significantly related to
the outcome variables at p < .05 and thus, included as covariates. To avoid potential multi-
collinearity issues, non-significant covariates were not forced into these exploratory models due
to their high correlations with SES, treatment intensity and home status. Using general linear
modeling, the results of the selective mediation analysis for H
2
showed that among under 21 year
old participants, PHSE was significantly related to CHSE ( = 0.30, p = .02), while controlling
for select covariates. Moderation analysis for H
2a
among the entire group examining PHSE by
age of CCS on CHSE was not supported ( = 0.048, p = .879).
Hypothesis 3. In accordance to the select mediation analysis for the under 21 group only,
the third hypothesis tested the relationship between predicted mediator PREV and PHSE. After
controlling for the selected covariates no significant association was found among the younger
CCS (OR = 1.09: CI: 0.818-1.445). The moderation analysis hypothesized among the whole
sample in H
3a
was also not significant between age, previous follow-up care and PHSE ( =
0.136, p = .500).
Hypothesis 4. The fourth model (H
4
) of the modified mediation analysis investigated the
relationship between the mediator CHSE and outcome variable INTENT among the under 21
year olds only. After controlling for the select covariates, a significant finding between the two
variables indicated that higher healthcare self-efficacy was associated with greater intent to seek
follow-up care among the younger CCS (OR = 1.398: CI: 1.007-1.940). Furthermore, after
testing the modification effect of age on CHSE and INTENT (H
4a
) the outcome revealed a
47
marginally significant interaction ( = 0.405, p = .05). Post hoc analysis confirmed that among
older CCS, the relationship between child healthcare self-efficacy and INTENT is much stronger
(OR = 3.900: CI: 1.672-9.101) than it is for the younger CCS.
Hypothesis 5. H
5
analyzed the relationship between previous follow-up care behavior
and the intent to seek future INTENT. Among the whole sample, CCS who attended a previous
follow-up care session were 8 times more likely to intend to seek follow-up care (OR = 8.230:
CI: 3.096-21.872). To test H
5a
, moderation analysis did not find any significant differences
between younger and older CCS on the relationship between PREV and INTENT ( = 0.076, p
= .590) confirming that previous behavior benefits future intent among all AYA and young adult
CCS.
Hypothesis 6. To test the final moderated hypotheses (H
6a
), a model was calculated that
included mediating variables (CHSE and PREV), the main predictor variable (PHSE), the
moderating variable (Age 21), the interaction term between them (PHSE by Age 21), and all
covariates. The results showed a significant interaction between parent healthcare self-efficacy
and CCS age on the intent to seek follow-up care ( = -0.683, p = .007). Among CCS under 21,
parent HSE was a significant indicator of the intent to seek follow-up care (p = .012); their own
CHSE was not. Conversely, among the older CCS, personal CHSE was significantly associated
with intent, while parent HSE was not. Between the two groups, younger CCS who attended a
previous follow-up care visit were 10 times more likely to intend to seek a future visit after
controlling for both parent and their own healthcare self-efficacy (CI: 2.24 – 51.27). In contrast,
older CCS who attended previous follow-up care visits were 28 times more likely to intend to
seek follow-up care after controlling for PHSE and CHSE (CI: 1.63-627.7). The detailed results
of these stratified models are displayed in Table 3-4.
48
Discussion
Present findings. The goal of the present study was to examine the role of parent
healthcare self-efficacy, CCS healthcare self-efficacy, and previous follow-up care behavior on
the INTENT to seek follow-up care. There are two notable findings. First, CHSE is associated
with INTENT among all CCS, however, this relationship is stronger among older (vs. younger)
CCS. Second, PHSE was a significant factor in the intent to seek follow-up care among younger
CCS under the age of 21, but not related to intent to seek follow-up care in older CCS. Thus,
parental attitudes have their greatest associations with INTENT before CCS transition to adult-
centered care. As the CCS transitions into adulthood, personal healthcare self-efficacy becomes
more important to long-term follow-up care. An alternative explanation of these findings may
exist in the natural child development trajectory. As adolescents move towards adulthood, they
are faced with a variety of experiences that shape their personal efficacy, and thus contribute to
their level of human agency (Bandura, 2006). These findings support previous cancer
survivorship research which found that self-management and self-efficacy are key factors in the
transition from child-centered care to adult-centered care (Sadak, 2017). Similar results can be
seen in aftercare programs among other populations with chronic illnesses. For example, in
young adult patients with Type 1 diabetes, diabetes-related healthcare self-efficacy is associated
with greater adherence to aftercare regimens as well as improved HbCA1 levels (a biomarker for
long-term blood glucose levels) (Johnston-Brooks, et al., 2002).
Strengths and limitations. This study adds to the growing body of cancer survivorship
literature among CCS and their parents. To date, it contains some of the largest matched
CCS/parent dyad participation in current research. The results from this research can inform the
49
direction of future longitudinal studies to track changes between parents and their children over
time. However, there are some limitations that should be taken into consideration. First, the data
was cross-sectional and thus, we cannot assess evidence of causality. Alternatively, the findings
may be heavily influenced by the parent demographics. More than 80% of the sample was
female and over half identified as Hispanic. Hispanic families tend to be family-centric, with
entire groups of immediate and extended family comprising a support system and responsible for
decisions making (Hobbs et al., 2015). It is possible that PHSE in this study was mostly captured
in mothers only and does not necessarily reflect the shared influence of multiple caregiver (e.g.,
fathers, grandparents, aunts, uncles, religious leaders) on CCS (Hobbs, et al., 2015). Also,
parents of younger CCS may have been more likely to participant in the original study as their
consent was required for participation, or only those parents with stronger relationships with
their child may have been more likely to respond. Furthermore, generalizability of this study is
limited to the unique Los Angeles environment, with a large Hispanic population and may only
generalize to other metropolitan areas with similar ethnic diversity. Finally, the exploratory
analysis among the under 21 year olds in this sample is preliminary and should be used to
support future longitudinal research.
Conclusion. The results of this study suggest that individually tailored support programs
are needed in addition to family-centered approaches to cancer survivorship healthcare, a
practice that is already used in pediatric oncology (Kuo et al., 2012). In families with younger
CCS, interventions targeting PHSE may be useful in promoting INTENT. In families with young
adult CCS, interventions that focus on improving CHSE during the transition to adult-centered
care are needed to encourage future lifetime cancer-related follow-up care. Given the severity
and likelihood of developing a late effect, life-time cancer-related follow-up care is crucial to the
50
long-term wellbeing of CCS. This study highlighted differences between parent-level and CCS-
level self-efficacy among different age groups. Future longitudinal research is needed to assess
the long-term impact of PHSE and CHSE on follow-up care behavior. In addition, more research
is needed to tailor individual survivorship strategies by age group.
51
Table 3-1.
General demographic data comparing the original Project Forward Childhood Cancer Survivor Study participants
excluded from the current study versus participants included in the current study
Characteristic
Study Participants Significance Testing
Excluded Included Excluded vs. Included
CCS Parent CCS Parent CCS Parent
(N = 106) (N = 44) (N = 129) (N = 129) Statistic p value Statistic p-value
Age M=20.2(2.48) M=48.0(5.93) M=19.5(2.96) M=49.0(6.48) t = 2.08 p = 0.04 t = 0.84 .40
Sex:
2
= 0.12 p = 0.73
2
= 0.93 .73
Males 50.4% 11.9% 49.6% 12.4%
Females 48.1% 88.1% 50.4% 87.6%
Ethnicity:
2
=1.39
p = 0.23
2
= 0.41
.52
Hispanic 60.4% 61.4% 52.7% 55.8%
Non-Hispanic 39.6% 38.6% 47.3% 44.2%
Note. Results in bold type highlight statistically significant differences.
52
Table 3-2.
Descriptive statistics of demographic characteristics and study variables of interest including their association with CCS
intent to seek follow-up care.
Characteristic
Association with the Intent to
seek follow-up care
N % statistic p-value
CCS Sex
2
= 4.87 .03
Male
64 49.6
Females
65 50.4
CCS Hispanic Ethnicity
2
= 1.80 .18
Hispanic
68 52.7
non-Hispanic
61 47.3
Parent Sex
2
= 1.48 .22
Male
16 12.4
Female
113 87.6
Parent Hispanicity
2
= 2.63 .10
Hispanic
72 55.8
Non-Hispanic
57 44.2
Parent Age
M = 48.0 (5.93) t = 0.52 .61
Under/over 21 years old
2
= 3.78 .05
CCS under 21 years of age 82 63.6
CCS over 21 years of age 47 36.4
Socio Economic Status* M =2.89 (1.45) t = 2.57 .01
1
st
Quintile (Lowest SES) 30 23.2
2
nd
Quintile 26 20.2
3
rd
Quintile 27 20.9
53
4
th
Quintile 20 15.5
5
th
Quintile (Highest SES) 26 20.2
Living at home
2
= 7.13 .007
Yes 26 20.2
No 103 79.8
Cancer diagnosis/site
2
= 4.73 .32
Leukemia 35 27.1
Brain/CNS 22 17.0
Bone 9 7.00
Lymphoma 27 21.0
Other 36 27.9
Treatment intensity M = 2.59 (0.77) t = 2.35 .02
1 (least intensive) 11 8.50
2 42 32.8
3 64 50.0
4 (most intensive) 11 8.50
Missing 1 0.70
Years since diagnosis M = 7.75 (2.03) t = 1.65 .11
Hospital
2
= 0.01 .90
Children’s Hospital Los Angeles 111 86.1
Miller Children’s Long Beach 18 13.9
Health Insurance
2
=22.7 < .001
Any (public or private) 87 67.4
None/Unknown 39 30.2
Missing 3 2.40
54
Note. Results in bold type highlight statistically significant differences.
Study Variables
Association with the Intent to
seek follow-up care
PREV
2
=33.87 <.001
Yes 93 72.1
No 35 27.1
Missing 1 0.80
CHSE M = 4.55 (1.70) t = 2.71 .001
PHSE M = 9.33 (2.71) t = 4.81 <.0001
INTENT --- ---
Yes 87 67.4
No/not sure
41 31.8
Missing
1 0.80
55
Table 3-3.
Correlation matrix between demographic variables and the study variables of interest
Study Variables
1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.
1. Age 21 +/- 1.00
2. CCS sex 0.02 1.00
3. Parent age 0.36*** 0.05 1.00
4. Parent sex -0.06 -0.01 -0.24** 1.00
5. Living at home -0.38*** 0.04 0.23** 0.05 1.00
6. SES -0.01 0.05 0.28** -0.13 -0.17 1.00
7. Treatment intensity -0.02 -0.17* 0.04 -0.02 0.07 -0.08 1.00
8. Time since diagnosis 0.31*** 0.08 0.12 -0.20* -.25** 0.02 -0.11 1.00
9. Insurance Status -0.16 -0.18* 0.03 0.01 0.13 0.19* 0.13 -0.01 1.00
10. Follow-up Intent -0.17 -0.20* 0.05 -0.11 0.24** 0.22* 0.21* -0.15 0.43*** 1.00
11. PHSE -0.33*** -0.18* -0.04 -0.05 0.12 0.21* 0.22* -0.07 0.29** 0.24** 1.00
12. CCS HSE -0.05 -0.10 0.01 -0.08 -0.02 0.14 0.05 -0.04 0.34*** 0.40*** 0.20* 1.00
13. Previous care -0.30** -0.06 -0.02 0.03 0.21* 0.20* 0.25* -0.10 0.30** 0.52*** 0.22* 0.24** 1.00
Note. Results in bold type highlight statistically significant differences.
*p < .05, **p < .01, ***p < .001
56
Table 3-4.
Final multivariable regression models of intent to seek follow-up care among CCS
stratified by under 21 years old vs 21 years or older
Multivariable Main Effects Model
Indicator Variable
Adjusted 95% CI 95% CI
Odds Ratio Lower Upper p value
CCS under age 21 yrs.
PHSE* 1.582 1.10 2.279 .012
CHSE 1.381 .948 2.012 .092
PREV* 10.71 2.24 51.27 .003
SES 1.573 .926 2.671 .094
Treatment Intensity
1.539 .590 4.016 .378
Living at home 0.040 .063 17.31 .978
CCS age 21 yrs. or over
PHSE 0.743 .492 1.123 .159
CHSE
4.262 1.60 11.42 .004
PREV 28.16 1.27 627.7 .035
SES 0.936 .330 2.655 .900
Treatment Intensity 0.833 .126 5.511 .850
Living at home 6.581 .376 115.2 .197
Note. Results in bold type highlight statistically significant differences.
57
CHAPTER 4: STUDY 2
Relationships between parent and child mental health among Hispanic and non-Hispanic
Childhood Cancer Survivors.
Rhona I Slaughter, Ann S. Hamilton, Julie A. Cederbaum, Jennifer B. Unger,
Lourdes Baezconde-Garbanati, & Joel E. Milam
Department of Preventive Medicine
Keck School of Medicine
University of Southern California
Contact:
Rhona I. Slaughter
Department of Preventive Medicine, Keck School of Medicine
2001 N. Soto St., 3
rd
Floor
Los Angeles, CA 90032
Phone (714) 732-9864
Email: rslaught@usc.edu
58
Abstract
The childhood cancer experience has a profound and lasting impact on the mental health of
Childhood Cancer Survivors (CCS) and their parents. Thus, an annual psychological assessment
is recommended for all CCS as part of their yearly follow-up care regimen. As families tend to
experience the cancer treatment and recovery together, it is reasonable that the mental health of
caregivers is also impacted, and may influence the mental health of the CCS. This may be
particularly true for ethnic CCS and their caregivers, such as Hispanic, because of the cultural
importance of family. To better understand this relationship, the purpose of this study was to
examine the associations between parent and CCS mental health, including differences by
Hispanic ethnicity. This study examined 129 matched CCS (M
age
= 19.5 yrs.; 49.9% female) and
parent (M
age
= 49.0 yrs.; 87.6% female) dyads. Over half identified as Hispanic (52.7%). Both
CCS and parents completed measures on depressive symptoms, perceived stress, and
posttraumatic growth. CCS also completed an additional quality of life measure, which parents
completed an addition posttraumatic stress disorder measure. After controlling for demographic
and clinical covariates, parent depressive symptoms, perceived stress, and posttraumatic stress
were positively associated with higher levels of depressive symptoms in CCS. Parent perceived
stress was negatively associated with CCS posttraumatic growth, and all three negative parent
mental health indicators were negatively associated with pediatric quality of life (all p’s < 0.05).
A significant interaction was found between Hispanic ethnicity, parent PSS and CCS total
depressive symptoms and quality of life revealing these relationships to be significant for
Hispanics but not significant for non-Hispanics. This study found that parent negative mental
health concerns are associated with positive and negative CCS mental health issues and
identified a unique relationship that exists within the Hispanic family that is not found among
non-Hispanic families. The results suggest that follow-up care protocols should be extended to
address the mental health needs of both the parent and child and tailored services need to address
specific concerns among Hispanic families. More research is needed to investigate potential
cultural differences within the Hispanic family.
59
Introduction
The experience of childhood cancer has a significant impact on the mental health
(Speechley & Noh, 1992; Stuber et al., 2010; Witt, et al., 2010; Yi, et al., 2015). This may
include lasting psychological symptoms, such as depressive symptoms, stress, posttraumatic
stress disorder, anxiety, and suicide ideation (COG, 2013). Further, treatments can results in
cognitive impairments as a result of surgery, tumor removal, and subsequent cancer treatment
affecting the CCS’s daily functioning abilities, which can lead to greater mental distress (COG,
2013). Because of these experiences, an annual psychological assessment is part of guidelines
established by the Children’s Oncology Group for all Childhood Cancer Survivors (CCS) (COG,
2013).
Studies show that depressive symptoms in CCS are associated with high anxiety, low
self-esteem and poor quality of life (Ho Cheung William Li, et al., 2012; H. C. William Li, et al.,
2013). Female CCS are found to be at higher risk for depressive symptoms than the general
population (Cantrell & Posner, 2014) Further, perceived stress can often manifest itself in CCS
who exhibit sexual dysfunctions and reproductive issues as a result of their cancer treatment,
which can interfere with marital satisfaction, intimacy and sexual relations, and quality of life
(Arès, et al., 2014; Joseph, et al., 2006; Sanders, 2009). Having poor perceived quality of life
may lead to CCS making unhealthy choices (e.g., poor dietary, decreased physical activity and
substance abuse), all of which may increase the likelihood of a experiencing a negative mental
health late effect (Badr, et al., 2013).
However, not all mental health outcomes in CCS are negative. A phenomenon called
posttraumatic growth (PTG) is commonly reported by childhood cancer survivors (Arpawong, et
al., 2013). PTG includes the positive changes and personal growth that occur as a result of a
60
traumatic or highly stressful event (Arpawong, et al., 2013). Barakat and colleagues (2006)
reported that 85% of adolescent cancer survivors described at least one positive outcome from
their cancer experience. This includes positive changes within themselves, with their
relationships with others, and an optimistic future outlook (Barakat, et al., 2006). Some of the
themes that underlie PTG include meaning making, appreciation of life, greater self-awareness,
closer relationships with family, greater spirituality, and a desire to give back to the community
(Duran, 2013). Gender and ethnic differences in PTG find that female CCS report greater PTG
(vs. males), and non-white persons (e.g., Hispanic and African American survivors) report
greater PTG than Caucasian CCS (Arpawong, et al., 2013; Bellizzi, et al., 2010; Yi, et al., 2015).
Furthermore, PTG in CCS is related to higher psychosocial functioning (Arpawong, et al., 2013)
including emotional functioning (e.g., being afraid or worrying about the future) and the ability
to function well in a social and school environment (Davis, et al., 2006; Varni, et al., 2001).
The cancer experience can also have a pronounced impact on the mental health of
parents. Caring for a child with cancer often increases parental stress, and results in poor quality
of life in parents (Witt, et al., 2010). Parents of CCS report feeling more depressive symptoms
and anxiety then parents of matched non-CCS controls (Speechley & Noh, 1992). Parent stress is
further increased when the CCS experiences neurocognitive late effects, such as diminished
executive functioning skills (Patel, Wong, Cuevas, & Van Horn, 2013). Parent-level factors can
also be associated with positive mental health outcomes of CCS. In Barakat and colleagues also
found among the 150 families studied, a majority of fathers and mothers (80% and 90%,
respectively) experienced at least one positive outcome as a result of their child’s cancer
experience, suggesting that PTG may co-occur between parents and children. Furthermore, in a
qualitative review, parents of self-reported “close-knit” families felt more cohesion and less
61
stress during their child’s cancer treatment (Duran, 2013). In turn, these CCS reported greater
PTG and stronger attachments to parents and siblings after the cancer treatment (Duran, 2013).
First introduced by Murray Bowen, the Family Systems Theory posits that individuals are
highly connected to their family members emotionally (Bowen, 1974). Feelings of one member
can significantly impact the emotions and feelings of other members within the family unit. For
example, one member’s anxiety may place extra perceived stress on the other household
members (Kerr, 2000). Through a review of the literature, Yi (2009) found Family Systems
Theory to be a useful guide when examining the impact of negative and positive cohesion among
CCS and their families (Yi, 2009). Indeed, families of cancer patients will experience cancer
treatment and recovery together, and are often known as “second order survivors”, a term coined
to describe the importance that family members have in helping each other adapt to the cancer
experience (Institute of Medicine, 2008).
In addition to the influence of family cohesion is family culture. Ethnic differences in
family culture may explain current disparities in mental health outcomes. Hispanic parents of
CCS report significantly higher rates of depressive symptoms and posttraumatic stress as a result
of their child’s cancer experience than non-Hispanic parents of CCS (Meeske, et al., 2013;
Myers, et al., 2014). Yet, Hispanics also report greater posttraumatic growth in response to their
cancer experience (Arpawong, et al., 2013; Smith, et al., 2008). Historically, Caucasian families
tend to value an individualistic culture in which self-direction and personal autonomy are
considered important attributes (Santos, et al., 2017). Conversely, the culture of Hispanic
families is associated with a familial approach, which values the interdependence of the family
unit. This cultural approach views the members of one’s family (both immediate and extended)
as the primary social and emotional support system (Sabogal, et al., 1987). Through the lens of
62
Family System’s Theory, the structure of familism may lend itself to greater sensitivity (vs. self-
direction/personal autonomy) in the changes of mental health outcomes (both positive and
negative) among its members. To date, little research has been conducted to examine the mental
health associations (and differences) between Hispanic CCS and their parents and non-Hispanic
CCS and their parents.
The purpose of this study is to examine the associations between parent mental health and
child mental health among families with a CCS. In addition, this study examines the specific role
of Hispanic ethnicity on these relationships. We hypothesize that indicators of negative parent
mental health (e.g., perceived stress, depressive symptoms, and posttraumatic stress) will be
positively associated with indicators of negative CCS mental health (e.g., perceived stress and
depressive symptoms), and negatively associated with indicators of positive CCS mental health
indicators (e.g., posttraumatic growth and quality of life). In addition, we predict Hispanic
ethnicity to moderate these relationships, such that Hispanic families have stronger associations
between parent and child mental health, than non-Hispanic families. The study hypotheses are
listed below while a conceptual model is presented in Figure 1.
H
1
: It is hypothesized that negative parent mental health measures will be positively
associated with negative CCS mental health indicators.
H
1
a: Parent stress, parent posttraumatic stress and parent depressive symptoms
will be positively associated with CCS stress.
H
1
b: Parent stress, parent posttraumatic stress and parent depressive symptoms
will be positively associated with CCS depressive symptoms.
H
2
: It is hypothesized that negative parent mental health measures will be negatively
associated with positive CCS mental health indicators.
63
H
2
a: Parent stress, parent posttraumatic stress and parent depressive symptoms
will be negatively associated with CCS posttraumatic growth.
H
2
b: Parent stress, parent posttraumatic stress and parent depressive symptoms
will be negatively associated with CCS quality of life.
H
3
: It is hypothesized that the relationships between negative parent mental health,
negative CCS mental health indicators and positive CCS mental health indicators will be
stronger among Hispanics than non-Hispanics.
H
3
a: Hispanic ethnicity will modify the relationship between parent stress, parent
posttraumatic stress and parent depressive symptoms and CCS perceived
stress.
H
3
b: Hispanic ethnicity will modify the relationship between parent stress, parent
posttraumatic stress and parent depressive symptoms and CCS depressive
symptoms.
H
3
c: Hispanic ethnicity will modify the relationship between parent stress, parent
posttraumatic stress and parent depressive symptoms and CCS posttraumatic
growth.
H
3
d: Hispanic ethnicity will modify the relationship between parent stress, parent
posttraumatic stress and parent depressive symptoms and CCS quality of
life.
64
Methods
Participants and procedure. The data for this study is from the original Project Forward
pilot study. Of the original 515 CCS identified in the original study, 50% of CCS participated (N
= 23; M:age
= 19.8 (2.78); 50.6% female; and 56.5% Hispanic)). There were 173 parents of the
CCS who also participated in the study (mean age = 48.8(6.63); 87.7% female).
Among the 173 parents, there were 13 caregivers whose children did not participate.
Their data was excluded from the study resulting in 160 matched parent/child dyads that
completed the surveys. From this sample, 14 CCS were currently receiving cancer treatment, and
17 CCS were less than two years from the time of their last treatment. In order to capture the
mental health conditions of participants in survivorship extending beyond the immediate recover/
remission phase, these patients were also excluded. This yielded a final sample of 129 matched
parent/child dyads (parent: M
age
= 49.0 (6.84), 87.6% female; and child: M
age
= 19.5, (2.96),
49.9% female) matched dyads, which were 52.7% Hispanic and at least two years beyond their
last cancer treatment. Comparisons between CCS included in this study (N = 129) and CCS
excluded from the study (N = 106) were examined to assess potential biases. No significant
differences were seen among the two groups regarding CCS sex, insurance status, SES, treatment
intensity or Hispanic ethnicity; nor were there any significant differences between the groups
among any of the indicator or outcome main variables of interest. Among the parents of excluded
participants (N = 44) and the study participant parents (N = 129) no significant differences in
parent age or parent sex were found. Only two of the demographic/clinical covariates were
significantly different. First, excluded CCS were slightly older than study participants (M
age
=
20.2(2.48), M
age
= 19.46(2.96), respectively). This could be reflective of the data collection
procedures because parents of CCS under the age of 18 were first contacted to provide consent
65
for their CCS to participate, which may have increased parent participation of the younger CCS.
In addition, lower participation of parents of older CCS was likely because the older CCS, who
were mailed study materials directly, were asked to provide permission to contact their parents as
well as their contact information. On average, based on the exclusion criteria, the excluded
participants had approximately 7.2 months less time since diagnosis than study participants (time
since diagnoses: M = 7.15(2.14) years, vs. M = 7.75(2.03) years, respectively).
Measures. Survey measures are described briefly below. Copies of complete survey
measures are located in the Appendix section.
Posttraumatic Growth Inventory – SF. Posttraumatic growth was measured by the PTGI
short form (Cann, et al., 2010). This is a 10-item measure is a shortened form of the original PTG
questionnaire by Tedeschi and Calhoun (1996). The PTGI-SF has been previously validated
among childhood cancer survivor populations ( = 0.87, = 0.95) (Yi & Kim, 2014; Yi, et al.,
2015). This measure reflects different areas of positive personal growth as a result of a traumatic
experience and includes five subscales: Relating to Others (for example “I have a greater sense
of closeness with others”), New Possibilities “I established a new path for my life”, Personal
Strength “I am able to do better things” , Spiritual Change “I have a better understanding of
spiritual matters”, and Appreciation of Life “I have a greater appreciation for life”, as well as an
overall composite score. Participants rated to what degree their cancer experience had influenced
their lives on a 6-point Likert-type rating scale ranging from 0 (“I did not experience this change
as a result of my crisis.”) to 5 (“I experienced this change to a very great degree as a result of my
crisis.”). A PTG total mean score was calculated from all 10 items, where higher scores indicate
more growth from the traumatic experience. Mean scores for each of the five subscales were also
created, consisting of two items each. The Cronbach alpha for this sample was .91.
66
Pediatric Quality of Life. The PedsQL measure was developed by Varni, Seid and Kurtin
(2001) for the purpose of measuring several aspects of psychosocial and health functioning
experienced by adolescents and young adults (Varni, et al., 2001). The physical functioning and
psychosocial functioning summary scales have been validated previously among childhood
cancer survivors ( = 0.89 and = 0.87, respectively) (Arpawong, et al., 2013). The PedsQL is a
23-item measure that includes several aspects of psychosocial and health functioning
experienced in the past month. Physical Health (It is hard for me to do sports activity or
exercise), Emotional Functioning (I have trouble sleeping), Social Functioning (it is hard for me
to keep up with my peers), and School functioning (Other teens tease me). Responses were made
on a 5-point Likert-type rating scale ranging from never to almost always. A total mean
composite score of all the items was calculated to create an overall Psychosocial Health
Summary Score. Mean scores for each of the four subscales, Physical Health (8 items),
Emotional Functioning (5 items), Social Functioning (5 Items), and School Functioning (5
items), were also created. The Cronbach alpha for this sample was .92 for the total PedsQL.
Center for Epidemiological Studies Depression Scale. The CES-D is a 20-item measure
comprised items taken from a variety of depressive symptoms scales (Radloff, 1977). This
measure has been validated previously among childhood cancer survivors and parents of CCS
populations ( = 0.91 and = 0.84, respectively) (Arpawong, et al., 2013; Meeske, et al., 2013).
In order to capture current depressive symptoms, participants are asked if they have felt a
particular way in the past 7 days. Items include 16 negatively worded questions, for example “In
the past week…I had trouble shaking off sad feelings” and 4 positively worded items, “In the
past week…I felt that I was just as good as other people” which are reverse coded for analyses.
Responses range from 0 meaning they rarely feel this way (0 – 1 days in the past week) to 3
67
meaning almost the entire week (5 -7 days in the past week). A total composite score was
calculated by summing all 20 items of the scale for a possible score between 0 to 80 points. This
measure is also broken down into four subscales. Negative Affect (7 items) measures the amount
to depressive symptoms one is feeling, such as loneliness, or having the blues. Positive Affect (4
items) refers to happiness and hope. Interpersonal Problems (2 items) accounts for negativity
among relationships, and Somatic Symptoms (7 items) captures activity related aspects of
depressive symptoms, such as eating and sleeping issues (Radloff, 1977). Each subscale was also
received a summed score. Cronbach alpha scores for total depressive symptoms was excellent for
CCS and good for parents ( = .92 and .84, respectively).
Perceived Stress Scale. PSS measures the degree to which an individual perceives the
current stressfulness in their lives (Cohen, et al., 1983). This study used the PSS-4 version of the
measure (Cohen, et al., 1983). The PSS-4 contains four items designed to measure the amount of
perceived stress experienced within the past month. The scale has two negatively worded items
(such as, felt that you were unable to control the important things in your life), and two
positively worded items (such as felt confident about the ability to handle your problems) that
are reverse coded for analysis. Answer responses on a 5-point Likert-type scale ranged from 0 =
Never, indicating the participant has not felt this way at all in the past 30 days, to 4 = Very
Often, which indicates that participant has felt this way for at least half of the month (15+ days).
Scores were summed to create a total perceived stress score for each participant with a possible
range from 0 to 16 points. Psychometric properties for the PSS-4 are considered reliable
(Cronbach alpha = 0.77) in the normative population (Warttig, Forshaw, South, & White, 2013),
and used in a variety of clinical populations among children and parents including parental stress
on childhood asthma, and maternal postpartum stress studies (Milam et al., 2008; Park et al.,
68
2015). Cronbach alpha for CCS PSS in this sample was .64, and .72 for Parent PSS. The low
reliability score for CCS is discussed in the limitations section.
Impact of Event Scale. Posttraumatic Stress Disorder in parents was measured using the
Impact of Event Scale-Revised measure by Weiss and Marmar (1997). The scale used in this
study was designed to capture current distressing feelings (e.g., I had waves of strong feeling
about it), somatic issues (e.g., I had trouble falling asleep), physical symptoms (e.g., sweating or
a pounding heart), and other stressors that had been experienced in the past week as a direct
result of their child’s cancer situation (Weiss & Marmar, 1997). Parents indicated to what degree
these difficulties bothered them on a scale from 0 (not at all) to 4 (extremely). Items were
summed to create scores in the possible range from 0 to 88 points, than averaged to create
individual mean scores. The IES-R also includes three subscales: Avoidance (8 items), Intrusions
(8 items) and Hyperarousal (6 items). These scores for these subscales were also created as mean
scores as recommended by the authors to allow for cross comparisons on a scale from 0 – 4
(Weiss & Marmar, 1997). This 22-item scale has been validated among parents of children
suffering trauma and found to be highly reliable (Cronbach’s alpha = 0.95) and recommends
using a cut-point of 1.5 to diagnose clinical levels of stress (Cacciatore, Lacasse, Lietz, &
McPherson's, 2013). Cronbach alpha for this sample was .97)
Covariates. Demographic, parent and family, clinical and system level covariates were
addressed in this study including age, sex, race, socio-economic status, parent’s age, parent’s
sex, living at home status, cancer diagnoses, cancer treatment intensity, number of years since
diagnoses, cancer treatment hospital site, and insurance status. The proxy for socio-economic
status (SES) was neighborhood-specific SES quintile measure based on census block data on
education and income levels provided by the cancer registry (SEER, n.d.) and treatment intensity
69
was calculated using the Intensity of Treatment Rating Scale 2.0 (ITR-2) (Werba, et al., 2007),
categorizing treatments into four levels of intensity: 1 = least intensive (e.g., surgery only), 2 =
moderately intensive (e.g., chemotherapy or radiation), 3 = very intensive (e.g., two or more
treatment modalities), 4 = most intensive (e.g., relapse protocols).
Statistical analyses plan. SAS statistical software (version 9.2) was utilized to examine
univariate associations and multivariate regression models. Preliminary analyses were used to
evaluate parent level predictors of posttraumatic stress, perceived stress and depressive
symptoms, as well as, CCS level outcomes of perceived stress, depressive symptoms,
posttraumatic growth, and quality of life. In addition, Hispanic ethnicity was evaluated as a
moderator.
Given the theoretical relationships between the main study variables and most of the
demographic variables, CCS age, CCS Sex, parent age, SES, treatment intensity, years since
diagnoses, living at home, insurance status, and Hispanic ethnicity were included in main effect
models regardless of significance at the bivariate level. Using the zero order correlation matrix as
a guideline (see Table 4), each CCS mental health outcome was modeled using only independent
variables significant at the p < .10 bivariate level. Similarly, Hispanic moderation models were
conducted on all CCS outcomes examining each parent measure as a separate factor since
Hispanic ethnicity bivariate associations were noted among all parent-level total and subscale
measures (refer to Table 2). To avoid collinearity issues among covariates in the moderation
models, only CCS age and sex were forced into each model. The rest of the included covariates
were related to the study variables at p < .10 significance; this included parent age, SES, and
insurance status.
Results
70
Descriptive Characteristics. The sample consisted of 47.3% non-Hispanic (N = 61)
parent/child dyads and 52.7% Hispanic (N = 68) parent/child dyads. Comparisons between the
two groups revealed no significant differences in CCS age, CCS sex, parent sex, intensity of
cancer treatment, number of years since diagnosis and hospital treatment. The only significant
demographic differences noted between the two groups were that Hispanic parents tended to be
younger (M = 46 yrs. old) than non-Hispanic parents (M = 52 yrs. old), and Hispanic families
had were located in significantly lower SES census blocks than non-Hispanic families. Table 4-1
displays the complete socio-demographic details for both ethnic groups.
Table 4-2 shows the univariate statistics for the CCS-level outcomes study variables and
the Parent-level indicator study variables. Notably, among positive mental health outcomes, PTG
was significantly different between the two groups. Overall, Hispanic CCS scored significantly
higher in all areas of PTG (i.e., total PTG, plus subscales for appreciation for life, new
possibilities, spirituality, relating to others, and personal strength) than non-Hispanic CCS (all
p’s < .05). Non-Hispanic CCS scored marginally higher than Hispanic CCS on the CESD
positive affect subscale (t = 1.83, p = .07), and no significant differences in pediatric quality of
life (and all associated subscales: physical health summary score, emotional functioning, social
functioning, and psychosocial health summary score) were noted between the groups. Moreover,
none of the negative mental health scores (i.e., perceived stress levels, depressive symptoms and
subscales, negative affect, somatic symptoms, and interpersonal problems differed between the
two CCS groups.
Among the parents’ negative mental health indicators, Hispanic parents scored
significantly higher in all areas of PTSD (i.e., IES total scale and subscales: avoidance, intrusions
and hyperarousal) and significantly higher in total CESD depressive symptoms and subscales:
71
negative affect and interpersonal problems than non-Hispanic parents (all p’s < .05). Hispanic
parents also had marginally higher perceived stress levels and somatic symptoms (p = .05 & .08,
respectively). Similar to the findings for CCS, non-Hispanic parents scored significantly higher
in CESD subscale positive affect than Hispanic parents (t = 2.24, p = .03).
Bivariate correlations. Detailed bivariate associations between demographic covariates
and the main study variables of interest are presented in Table 4-3. Among the CCS-level
outcome measures, most of the demographic associations were found to be significant among the
positive mental health indicators. Older CCS was correlated with higher PedsQL subscale
physical health scores and marginally higher PTG subscale personal strength. Male CCS
reported significantly higher CESD subscale negative affect scores than females, while females
were more likely to have higher scores on PedsQL Total score, plus subscale emotional
functioning, and marginally higher on subscale psychosocial health summary. Being an older
parents were associated with more positive affect among CCS; being a younger parent was
correlated with higher PTG total and subscale, appreciation for life, in CCS. Female parent was
significantly associated with higher CCS PTG total scores and subscales; new possibilities, and
personal strength, whereas male parent was associated with higher PTG, and subscale
appreciation of life among CCS. Family SES status was marginal associations among CCS
positive affect and PTG subscales, and CCS with insurance were associated with higher CESD
subscale positive affect scores (all p’s < .10).
Among the parent-level indicators and demographic associations, parent age was
negatively associated with the EIS subscale avoidance, PSS, total CESD and subscales, negative
affect, and somatic symptoms; and positively correlated with CESD subscale positive affect. SES
was negatively correlated with all of the parent-level indicators (IES and subscales, perceived
72
stress, and CESD and subscales) except for positive affect, for which SES was positively
correlated. Insurance status (yes vs no) was negatively related with parent avoidance and
interpersonal problems.
Zero-order correlations. Noteworthy zero-order correlations for the variables of interest
are briefly described here, with all results presented in Table 4-4. First, CCS PSS was not
significantly correlated with any of the parent-level mental health indicators. CCS depressive
symptoms, plus subscales negative affect, somatic symptom and interpersonal problem, were
positively significantly associated with parent PTSD (i.e., total IES, and avoidance, intrusions
and hyperarousal subscales). CCS PTG was positively associated with parent IES scores,
suggesting that higher parent PTSD is correlated with higher child posttraumatic growth.
Conversely, among pediatric quality of life, PedsQL subscales emotional and psychosocial
functioning were significantly negatively related to parent PTSD, (i.e., IES and subscales)
indicating that these same parent level indicators are adversely related to CCS emotional
function and psychosocial health.
Multivariable regression model outcomes. Table 4-5 displays the results for all
multivariate models that include negative parent mental health and negative CCS mental health
variables. Table 4-6 displays the results for all multivariate models that include negative parent
mental health and positive CCS mental health variables.
CCS perceived stress. At the bivariate level, only IES subscale, parent avoidance was
significantly correlated with CCS PSS. Therefore, only the main effect for parent avoidance was
examined. No significant relationship was observed. Among the Hispanic moderation models, no
significant interactions were found between Hispanic ethnicity and Parent total CESD, Parent
PSS, or Parent IES, or their associated subscales.
73
CCS depressive symptoms. Among the CCS negative mental health outcomes, parent
total depressive symptoms, parent negative affect, parent somatic symptoms, Parent PSS, parent
IES, parent avoidance, parent intrusions and parent hyperarousal were all positively associated
with CCS depressive symptoms, CCS negative affect, CCS somatic symptoms, and CCS
interpersonal problems (all p’s < .01). Parent positive affect was found to be negatively
associated with CCS interpersonal problems. Furthermore, Hispanic ethnicity was found to
significantly moderate the relationship between parent PSS and total CCS depressive symptoms
(p = .035), and marginally moderate the relationship between parent PSS and CCS negative
affect and somatic symptoms (p =.08). Post hoc stratification comparing Hispanic and non-
Hispanic samples revealed the relationship between parent stress and CCS depressive symptoms
was significant for Hispanics ( =.385, p = .002), but not significant for non-Hispanics ( = .122,
p = .413). This same trend appears between parent PSS and CCS negative affect (Hispanic p =
002; non-Hispanic p = .289) and between parent PSS and CCS somatic symptoms (Hispanic p
= .006, non-Hispanic p =.304).
CCS posttraumatic growth. Next, a series of regression models were computed to
examine the relationship between parent negative mental health and CCS positive mental health
outcomes. Parent perceived stress was significantly negatively related to CCS total posttraumatic
growth, appreciation for life and relating to others, where lower levels of stress in the parents
were associated with higher levels of total PTG, appreciation for life and relating to others in the
survivor. Neither PTSD or CESD (or the associated subscales) were significantly associated with
CCS PTG.
CCS pediatric quality of life. Finally, the relationship between negative parent mental
health and CCS pediatric quality of life was assessed. Similar to the previous findings parent
74
total depressive symptoms, negative affect , somatic symptoms, were negatively associated with
total CCS Quality of life scores, emotional, social and school functioning. Parent posttraumatic
stress was negatively associated with total CCS quality of life and emotional functioning, but not
social or school functioning. CCS physical functioning was only related to parent somatic
symptoms and perceived stress. Models examining CCS psychosocial health summary scores
included physical health scores as a covariate to address the relationship between parent negative
mental health on CCS psychosocial quality of life independent of physical health problems. The
results indicated that Parent total depressive symptoms, negative affect, somatic symptoms,
perceived stress, total IES, avoidance, intrusions and hyperarousal were all negatively associated
with CCS psychosocial health even after accounting for the effects physical functioning. As seen
with the previous moderation models, Hispanic ethnicity was found to significantly moderate the
relationship between parent stress and CCS emotional functioning (p = .03), and marginally
moderate the relationship between parent stress and total quality of life (p = .05) and between
parent stress and physical functioning (p = .08). Upon stratification analyses, the same trend
continued where all three of these relationships among Hispanics were significant, but not seen
among non-Hispanics CCS (all p’s < .001 for Hispanics, and ns for non-Hispanics).
Discussion
Present findings. Given their initial cancer experience and potential life-time secondary
medical issues related to the cancer treatment, many CCS and their parents experience mental
health symptoms after treatment is completed. These psychosocial issues can be exacerbated or
in some cases, protective, among ethnic families, where cultural factors may exert an additional
influence. The purpose of this study was to examine the associations between parent mental
health and child mental health among families with a CCS, as well as the additional role of
75
Hispanic ethnicity on these relationships. The results supported the hypotheses that parent
negative mental health factors are associated with CCS positive and negative mental health
outcomes after controlling for a variety of demographic and clinical covariates.
Among all CCS, parent total depressive symptoms, negative affect and somatic
symptoms are related to both positive and negative outcomes. Higher levels of depressive
symptoms in parents were associated with higher levels of depressive symptoms in CCS. Parent
perceived stress and posttraumatic stress were also positively related to CCS depressive
symptoms. This supports previous findings on the significant relationships between parent
posttraumatic stress and child stress and depression in response to a child-related trauma, such a
chronic and acute childhood illnesses, and injuries (Morris, Gabert-Quillen, & Delahanty, 2012).
Regarding posttraumatic growth in CCS, only parent perceived stress was significantly
related to PTG after controlling for covariates. Current research shows the positive correlation
between CCS posttraumatic stress and posttraumatic growth which may suggest that the CCS’s
own PTSD experiences are more important in terms of their emotional growth than their parent’s
PTSD experience (Arpawong, et al., 2013).
CCS quality of life was positively associated with parent PSS. Further, CCS somatic
symptoms were associated with the CCS’s physical functioning and psychosocial functioning.
However, when controlling for physical functioning in the psychosocial model, parent PSS and
somatic skills, along with parent total depressive symptoms, negative affect, posttraumatic stress,
and IES subscales of avoidance, intrusions and hyperarousal remained significant, signaling an
association with psychosocial health above and beyond physical problems.
The moderated effect of Hispanic ethnicity found between parent PSS and several
outcome factors contributes to the literature on ethnic differences in the experience of childhood
76
cancer. These results indicate that parent perceived stress among Hispanics families is uniquely
associated with total depressive symptoms, negative affect, somatic symptoms, quality of life,
physical functioning, and emotional functioning in Hispanic CCS ; whereas these relationships
are not seen in non-Hispanic families. Perceived stress is different from posttraumatic stress, in
that the measure is designed to capture current general stress levels within the past month
(Cohen, et al., 1983). Posttraumatic stress is stress that is specifically related to the child’s
previous cancer experience. The finding that Hispanic ethnicity is a moderator associated with
PSS and not PTSD may point to a cultural issue. Women are often the primary household
manager in most Hispanic families and tend to hold the responsibility of caregiving for the
immediate and extended family members (Perez & Cruess, 2014). These burdens place a
considerate amount of daily stress on the Hispanic mother. In a nation-wide phone survey of 434
Hispanics, 34% of participants cited concerns over their family member’s health as their leading
source of stress (American Psychological Association, 2006). Furthermore, this group is also less
likely to seek professional services to address mental health concerns (Villatoro, Morales, &
Mays, 2014). Despite the non-significant moderation of Hispanic ethnicity and PTSD, research
shows that Hispanics are still more prone to develop PTSD than other ethnic groups, which
suggests that perhaps acculturation issues within the Hispanic family unit may be responsible for
the disparity in PTSD that is not captured in this study (Fierros & Smith, 2006; Meeske, et al.,
2013). Additional research is needed to examine the multifaceted acculturation issues associated
with Hispanic families and mental health.
The results of this research emphasize the importance of addressing the needs of
caregivers throughout CCS follow-up and survivorship care. Previous research found no
differences in levels of depressive symptoms between CCS and their siblings; possibly
77
suggesting that parent level factors may not only contribute to CCS negative mental health
outcomes, but also extend to other members of the family (Kamibeppu et al., 2010). Similarly,
when compared to the general population, non-cancer siblings of CCS were found to have
significantly higher levels of posttraumatic growth, which could also be indicative of parent level
influences on the entire family unit (Kamibeppu, et al., 2010).
Strengths and limitations. The large number of parent/child dyads examined in the
study, as well as the large Hispanic representation, is a primary strength of this research study.
Hispanics make up a quarter of new childhood cancer diagnoses each year, yet this population is
underserved in the literature (Meeske, et al., 2013). This study also identifies areas of need in the
current family-centered aftercare programs, particularly among Hispanic families where
differences in PTSD were noted. There are a few precautions that must be taken into
consideration when generalizing these results to the entire CCS population. First, the study
sample was limited to participants who were treated in the Los Angeles area and may not be
generalizable across all CCS populations. Further, the analyses utilized cross-sectional, self-
reported data, a study design that is meant to capture a specific moment in time to identify
potential trends. Data examined in this study was restricted to complete parent/dyads only
(particularly mothers), as a result there may be significant biases in generalizing the results to all
caregivers of CCS. Furthermore, the CCS whose parents participated in the study were younger
than those whose parents did not participate, suggesting a potential bias in parent responses. A
little more than half of the Hispanic sample in this study (54%) completed the Spanish language
version of the survey which may resulted in the possibility of measurement error that can occur
when using the same psychological measures in different languages across ethnic groups
(Ramirez, Ford, Stewart, & Teresi, 2005).
78
Conclusion. The lack of Hispanic moderation aside from parent perceived stress is
noteworthy given that previous research purports Hispanic parents of CCS are more likely to
have higher depressive symptoms than non-Hispanic parents (Meeske, et al., 2013). Moreover,
the Hispanic CCS is this sample reported higher posttraumatic growth in all areas (vs. non-
Hispanic CCS). This disparity could be due to cultural differences specifically within the
Hispanic family unit. Studies show that Hispanic parents of CCS born outside the US and prefer
communicating in their native Spanish language report higher levels of stress and depressive
symptoms than more acculturated Hispanic families (Meeske, et al., 2013; Sahler, et al., 2013).
Differences in Hispanic culture are also found to be associated with PTG, where Hispanic CCS
who speak English at home report significantly lower PTG than Hispanic CCS who speak
primarily Spanish at home (Arpawong, et al., 2013). Future research is needed to further unpack
these factors.
This study investigated the influences of parent negative mental health on CCS positive
and negative mental health outcomes. In addition to identifying parental factors associated with
the general CCS population, this project investigated how Hispanic ethnicity may impact
outcomes in Hispanic CCS differently than in non-Hispanic CCS. The outcome of these studies
may inform clinicians on improving techniques addressing mental health issues in CCS families
and tailoring benefits to address specific issues in ethnic families in order to improve the overall
wellbeing in both the CCS and parents of CCS.
79
Table 4-1.
Demographic comparisons of CCS and their parents between the non-Hispanic and
Hispanic parent/child dyads
Note. Results in bold type highlight statistically significant difference.
Characteristic
Hispanic
(N = 68 dyads)
Non-Hispanic
(N = 61 dyads)
Mean(SD)/Percentage Mean(SD)/Percentage Statistic p-value
CCS Age M=19.35(2.77) M=19.57(3.17) t =0.42 0.67
CCS Sex
2
=0.009 0.93
Male 50.0 50.8
Female 50.0 49.2
Parent Age M=46.32 (6.07) M=51.98 (6.33) t =5.03 <0.001
Parent Sex
Male
10.3 14.8
2
=0.59 0.44
Female 89.7 85.6
Living at home
2
=2.65 0.10
Yes 85.3 73.8
No 14.7 26.2
SES M=1.99 (1.04) M=3.90 (1.14) t =9.99 <0.001
1
st
Quintile (Lowest) 39.7 4.9
2
=60.5 <0.001
2
nd
Quintile 33.8 4.9
3
rd
Quintile 17.7 24.6
4
th
Quintile 5.9 26.2
5
th
Quintile (Highest) 2.9 39.3
Treatment Intensity M = 2.57(.78) M=2.60 (.76) t =0.19 0.85
1 (least intensive) 8.8 8.2
2
33.8 31.2
3
48.5 50.9
4 (most intensive)
8.8 5.2
Missing
0.0 1.7
Years since diagnosis M=7.79 (2.11) M=7.70 (1.94) t =0.26 0.80
Hospital
Children’s Hospital
Los Angeles 89.7 82.0
2
=1.60 0.21
Miller Children’s
Long Beach 10.3 18.0
Health Insurance
Any (public or private) 61.8 73.8
2
=2.71 0.10
None/Not Sure 38.2 26.2
80
Table 4-2.
Univariate comparisons between non-Hispanic and Hispanic CCS outcome variables of
interest and parent indicator study variables
CCS – Level
Outcome Variables
Hispanic
(N=68 dyads)
Non-Hispanic
(N = 61 dyads)
Mean(SD)/Percentage Mean(SD)/Percentage Statistic p-value
CCS Perceived Stress M=5.28(2.99) M=4.90(3.25) t=0.69 0.49
CCS Total Depressive
Symptoms
M=15.1(11.8) M=12.1(10.4) t=1.47 0.14
Positive affect M=8.44(3.17) M=9.36(2.45) t=1.83 0.07
Negative affect M=4.74(5.46) M=4.00(4.55) t=0.83 0.41
Somatic symptoms M=5.94(3.85) M=5.20(4.38) t=1.02 0.31
Interpersonal problems M=0.91(1.29) M=0.85(1.25) t=0.26 0.79
CCS Total Posttraumatic
Growth
M=38.6(10.9) M=32.0(10.9) t=3.42 <.001
Appreciation of Life M=8.52(2.13) M=7.28(2.60) t=2.91 .004
New Possibilities M=7.58(2.37) M=6.05(2.84) t=3.26 .001
Spiritual M=6.95(2.79) M=4.72(3.33) t=4.05 <.001
Relating to Other M=7.73(2.33) M=6.52(2.55) t=2.77 .006
Personal Strength M=8.52(2.01) M=7.62(2.42) t=2.26 .026
CCS Total Pediatric Quality
of Life
M=75.5(17.4) M=75.2(16.7) t=0.09 0.93
Physical Health
Summary
M=77.2(23.3) M=76.7(21.1) t=0.14 0.89
Emotional Functioning M=69.6(23.60) M=71.2(25.7) t=0.38 0.71
Social Functioning M=87.4(17.09) M=83.1(16.9) t=1.45 0.15
School Functioning M=66.6(20.59) M=68.9(20.5) t=0.62 0.54
Psychosocial Health
Summary
M=74.5(16.43) M=74.4(18.0) t=0.03 0.98
Parent – Level
Indicator Variables
Hispanic
(N=68 dyads)
Non-Hispanic
(N = 61 dyads)
Mean(SD)/Percentage Mean(SD)/Percentage Statistic p-value
Parent Total Impact of
Event Scale
M=36.3(23.7) M=14.5(17.7) t=5.76 <.001
Avoidance subscale M=14.1(8.76) M=4.83(5.94) t=6.86 <.001
Intrusions subscale M=13.4(8.91) M=6.07(7.11) t=5.03 <.001
Hyperarousal subscale M=8.80(7.19) M=3.61(5.72) t=4.39 <.001
81
Note. Results in bold type highlight statistically significant differences
Parent Perceived Stress M=6.14(3.58) M=4.92(3.44) t=1.95 .050
Parent Depressive
Symptom Total
M=17.9(13.0) M=11.7(11.9) t=2.79 .006
Positive affect M=6.73(2.88) M=7.92(3.11) t=2.24 .030
Negative affect M=6.29(5.70) M=3.57(4.91) t=2.89 .004
Somatic symptoms M=5.87(4.79) M=4.44(4.40) t=1.75 .080
Interpersonal problems M=1.21(1.65) M=0.62(1.10) t=2.33 .020
82
Table 4-3.
Bivariate associations between main-effect study variables and potential demographic covariates (n = 129)
CCS LEVEL
CCS
age
CCS
sex
Parent
age
Parent
sex
Living
at
Home SES
Treatment
intensity
Years
since
Diagnosis
Insurance
status
Outcome Measures Mean SD
ref =
female)
ref =
female
ref =
not
home
ref = no
insurance
CCS Perceived Stress 5.10 3.11 0.11 0.13 -0.03 0.12 -0.04 0.00 0.01 0.08 -0.16*
CCS Total Depressive Symptoms 13.67 11.2 0.09 0.12 -0.12 0.14 -0.01 -0.13 0.00 -0.02 -0.11
Positive Affect 8.88 2.88 -0.05 -0.03 0.22** -0.11 -0.06 0.15* -0.04 -0.03 0.18**
Negative Affect 4.38 5.05 0.05 0.22** -0.08 0.08 -0.07 -0.08 -0.06 0.00 -0.11
Somatic Symptoms 5.59 4.11 0.11 0.11 -0.06 0.03 -0.09 -0.09 -0.03 0.02 -0.11
Interpersonal Problems .884 1.27 0.14 0.03 0.00 0.04 -0.05 -0.07 0.02 0.13 -0.17*
CCS Total Posttraumatic Growth 35.38 11.3 -0.13 0.05 -0.21** -0.21** 0.01 -0.11 0.03 0.03 0.01
Appreciation of Life 7.91 2.44 -0.13 0.12 -0.18** 0.19** -0.01 -0.09 0.07 0.01 0.02
New Possibilities 6.84 2.71 -0.10 -0.01 -0.17* -0.19** 0.02 -0.16* 0.10 0.00 0.04
Spiritual 5.85 3.25 -0.10 0.01 -0.12 -0.14 0.05 -0.12* 0.00 0.02 0.08
Relating to Other 7.14 2.50 -0.09 0.10 -0.10 -0.19** -0.04 -0.10 -0.05 0.07 0.04
Personal Strength 8.08 2.25 -0.15* 0.10 -0.12 -0.16* -0.01 -0.09 0.04 0.02 -0.06
CCS Pediatric Quality of Life – Total 75.34 16.9 -0.13 -0.17** -0.03 0.04 0.01 0.00 0.04 -0.10 0.10
Physical Health Summary 76.96 22.2 -0.20** -0.14 -0.08 0.13 -0.01 0.04 0.05 -0.07 0.06
Emotional Functioning 70.36 24.5 -0.10 -0.24** 0.00 -0.06 0.07 0.01 0.03 -0.02 0.15*
Social Functioning 85.39 17.1 -0.09 -0.03 -0.10 0.04 0.06 -0.12 0.01 -0.19* 0.06
School Functioning 67.68 10.5 0.06 -0.10 0.10 -0.02 -0.08 0.03 0.04 -0.09 0.05
Psychosocial Health Summary 75.46 17.1 -0.05 -0.16* 0.01 -0.02 0.02 -0.02 0.03 -0.11 0.11
PARENT LEVEL
Parent Total Impact of Event Scale 25.99 23.6 0.04 -0.05 -0.16* 0.09 0.04 -0.42** 0.10 -0.09 -0.17*
Avoidance subscale 9.74 8.86 0.03 0.00 -0.18** 0.05 0.06 -0.42** 0.06 -0.06 -0.22**
Intrusions subscale 9.93 8.87 0.07 -0.08 -0.13 0.10 0.02 -0.40** 0.10 -0.09 -0.17*
Hyperarousal subscale 6.33 7.00 0.02 -0.08 -0.14 0.10 0.03 -0.35** 0.12 -0.09 -0.10
83
Parent Perceived Stress 5.54 3.55 -0.04 -0.08 -0.23** 0.11 0.04 -0.22** 0.02 -0.11 -0.16*
Parent Total Depressive Symptoms 14.92 12.8 0.00 -0.10 -0.23** 0.09 0.00 -0.27** 0.04 -0.02 -0.10
Positive affect 7.30 3.04 0.03 0.06 0.23** 0.04 -0.08 0.19** 0.00 0.10 0.13
Negative affect 5.01 5.50 0.06 -0.10 -0.18** 0.10 -0.05 -0.29** 0.04 0.01 -0.10
Somatic symptoms 5.19 4.65 -0.02 -0.09 -0.22** 0.10 -0.02 -0.19** 0.09 -0.03 -0.05
Interpersonal problems 0.930 1.44 0.00 -0.04 -0.17* 0.13 -0.06 -0.24** -0.02 0.07 -0.20**
Note. Results in bold type highlight statistically significant differences.
*p < .05; **p < .01; ***p < .001
84
Table 4-4.
Zero order correlations among main study variables, and ethnic and acculturation variables
Study Variables of Interest
Parent
Impact of
Event
Scale
Parent
Avoidance
Parent
Intrusions
Parent
Hyper-
arousal
Parent
Perceived
Stress
Parent
Total
Depressive
Symptoms
Parent
Positive
Affect
Parent
Negative
Affect
Parent
Somatic
Symptoms
Parent
Inter-
personal
Problems
CCS Perceived Stress
0.11 0.15* 0.09 0.08 0.14 0.13 -0.03 0.12 0.13 0.10
CCS Total Depressive Symptoms
0.32*** 0.32** 0.28** 0.32*** 0.30*** 0.31*** -0.12
0.31*** 0.30*** 0.11
Positive Affect
-0.16* -0.17* -0.11 -0.17* -0.20** -0.25** 0.13 -0.22** -0.24** -0.16*
Negative Affect
0.32*** 0.29*** 0.31*** 0.33*** 0.29*** 0.30*** -0.09
0.31*** 0.29*** 0.09
Somatic Symptoms
0.28** 0.28** 0.26** 0.27** 0.27** 0.28** -0.16* 0.25** 0.29*** 0.10
Interpersonal Problems
0.33*** 0.31*** 0.30*** 0.33*** 0.31*** 0.36*** -0.22**
0.35*** 0.31*** 0.20**
CCS Total Posttraumatic Growth
0.18** 0.21** 0.16* 0.13 -0.14 -0.05 -0.03 0.01 -0.12 -0.05
Appreciation of Life
0.16* 0.21** 0.13 0.13 -0.14 -0.07 0.07 -0.02 -0.09 -0.07
New Possibilities
0.22** 0.24** 0.20** 0.18* -0.08 0.03 -0.06 0.11 -0.05 0.00
Spiritual
0.26** 0.28** 0.25** 0.19** -0.07 0.01 -0.09 0.07 -0.09 -0.01
Relating to Other
0.17* 0.19** 0.16* 0.15 -0.20** -0.08 0.03 0.00 -0.12 -0.09
Personal Strength
0.09 0.14 0.06 0.06 -0.08 -0.08 0.00 -0.05 -0.13 -0.12
CCS Total Pediatric Quality of Life
-0.17* -0.18** -0.14 -0.17* -0.26** -0.24** 0.10 -0.19** -0.30*** -0.06
Physical Health Summary
-0.08 -0.09 -0.05 -0.07 -0.18** -0.11 0.03 -0.07 -0.18** 0.01
Emotional Functioning
-0.26** -0.26** -0.22** -0.28** -0.25** -0.26** 0.10 -0.24** -0.30*** -0.09
Social Functioning
-0.09 -0.09 -0.05 -0.10 -0.19** -0.19** 0.06 -0.15* -0.24** -0.05
School Functioning
-0.15* -0.16* -0.12 -0.13 -0.24** -0.25** 0.16* -0.20** -0.27** -0.09
Psychosocial Health Summary
-0.21** -0.22** -0.18* -0.22** -0.28** -0.29** 0.13 -0.24** -0.33*** -0.10
Note. Results in bold type highlight statistically significant differences.
*p < .05; **p < .01; ***p < .001
85
Table 4-5.
Adjusted standardized parameter estimates for parent mental health indicators
associated with CCS Perceived Stress, CCS Depressive Symptoms, and corresponding
subscales
Multivariable Regression Model Results
SE t p
Outcome: CCS Perceived Stress
Main Effect Model
Parent Avoidance .167 .037 1.48 .142
Interaction Models
Parent CESD*Hispanic .224 .046 1.11 .271
Parent Positive Affect*Hispanic .013 .193 0.05 .959
Parent Negative Affect*Hispanic .237 .108 1.23 .223
Parent Somatic Symptoms*Hispanic .160 .122 0.84 .401
Parent Interpersonal Rel. *Hispanic .010 .428 0.05 .958
Parent PSS*Hispanic .104 .165 0.47 .643
Parent Total IES*Hispanic .150 .030 0.58 .561
Parent Avoidance*Hispanic -.201 .087 -0.70 .483
Parent Intrusions*Hispanic .094 .302 1.25 .213
Parent Hyperarousal*Hispanic .089 .208 .093 .345
Outcome: CCS Depressive Symptoms
Main Effect Models
Parent Total CESD .275 .081 2.93 .004
Parent Negative Affect .281 .191 2.99 .004
Parent Somatic Symptoms .256 .222 2.75 .007
Parent PSS .285 .292 3.07 .003
Parent Total IES .289 .047 2.74 .007
Parent Avoidance .306 .130 2.80 .006
Parent Intrusions .237 .126 2.26 .026
Parent Hyperarousal .271 .152 2.71 .008
Interaction Models
Parent CESD*Hispanic .322 .165 1.66 .100
Parent Positive Affect*Hispanic -.170 .717 -0.64 .521
Parent Negative Affect*Hispanic .239 .391 1.30 .197
Parent Somatic Symptoms*Hispanic .162 .450 0.87 .387
Parent Interpersonal Rel. *Hispanic .227 1.60 1.16 .247
Parent PSS*Hispanic .423 .568 2.13 .035
Parent Total IES*Hispanic .117 .105 0.47 .641
Parent Avoidance*Hispanic -.163 .303 -0.59 .555
Parent Intrusions*Hispanic .235 .266 1.00 .318
86
Parent Hyperarousal*Hispanic .202 .325 0.96 .340
Outcome: CCS Positive Affect
Main Effect Models
Parent Total CESD -.167 .020 -1.82 .071
Parent Negative Affect -.152 .047 -1.65 .102
Parent Somatic Symptoms -.161 .054 -1.79 .076
Parent Interpersonal Relations -.100 .175 -1.08 .281
Parent PSS -.127 .072 -1.38 .169
Parent Total IES -.036 .012 -0.35 .725
Parent Avoidance -.055 .033 -0.52 .605
Parent Hyperarousal .001 .031 0.10 .922
Interaction Models
Parent CESD*Hispanic -.309 .040 -1.63 .107
Parent Positive Affect*Hispanic .184 .172 0.75 .458
Parent Negative Affect*Hispanic -.289 .096 -1.56 .121
Parent Somatic Symptoms*Hispanic -.143 .109 -0.80 .428
Parent Interpersonal Rel. *Hispanic -.256 .381 -1.36 .178
Parent PSS*Hispanic -.205 .145 -0.97 .334
Parent Total IES*Hispanic -.030 .027 -0.12 .903
Parent Avoidance*Hispanic .173 .078 0.64 .524
Parent Intrusions*Hispanic -.078 .067 -0.34 .733
Parent Hyperarousal*Hispanic -.127 .083 -0.62 .540
Outcome: CCS Negative Affect
Main Effect Models
Parent Total CESD .285 .036 3.06 .003
Parent Negative Affect .296 .085 3.16 .002
Parent Somatic Symptoms .279 .098 3.04 .003
Parent PSS .230 .131 3.25 .002
Parent Total IES .364 .022 3.50 .001
Parent Avoidance .332 .061 3.02 .003
Parent Intrusions .342 .057 3.36 .001
Parent Hyperarousal .346 .069 3.52 .001
Interaction Models
Parent CESD*Hispanic .121 .073 0.65 .518
Parent Positive Affect*Hispanic -.090 .318 -0.37 .715
Parent Negative Affect*Hispanic .034 .170 0.20 .844
Parent Somatic Symptoms*Hispanic -.001 .197 -0.01 .995
Parent Interpersonal Rel. *Hispanic .070 .725 0.36 .719
Parent PSS*Hispanic .348 .252 1.76 .082
Parent Total IES*Hispanic -0.01 .045 -0.05 .962
Parent Avoidance*Hispanic -.177 .131 -0.72 .475
Parent Intrusions*Hispanic .089 .113 0.42 .672
87
Parent Hyperarousal*Hispanic .054 .141 0.28 .778
Outcome: CCS Somatic Symptoms
Main Effect Models
Parent Total CESD .261 .031 2.72 .008
Parent Positive Affect -.133 .130 -1.37 .173
Parent Negative Affect .230 .073 2.37 .020
Parent Somatic Symptoms .267 .083 2.85 .005
Parent PSS .280 .114 2.92 .004
Parent total IES .292 .018 2.69 .008
Parent Avoidance .310 .050 2.76 .007
Parent Intrusions .252 .048 2.37 .020
Parent Hyperarousal .256 .058 2.49 .015
Interaction Models
Parent CESD*Hispanic .208 .620 1.09 .276
Parent Positive Affect*Hispanic -.070 .226 -0.28 .782
Parent Negative Affect*Hispanic .161 .145 0.90 .370
Parent Somatic Symptoms*Hispanic .110 .165 0.62 .539
Parent Interpersonal Rel. *Hispanic .157 .601 0.82 .413
Parent PSS*Hispanic .351 .217 1.72 .084
Parent Total IES*Hispanic .049 .037 0.21 .831
Parent Avoidance*Hispanic -.145 .107 -0.57 .572
Parent Intrusions*Hispanic .174 .094 0.79 .428
Parent Hyperarousal*Hispanic .073 .118 0.36 .717
Outcome: CCS Interpersonal Problems
Main Effect Models
Parent Total CESD .369 .009 3.99 <.001
Parent Positive Affect -.247 .039 -2.61 .010
Parent Negative Affect .340 .022 3.62 .001
Parent Somatic Symptoms .305 .025 3.29 .001
Parent Interpersonal Problems .144 .084 1.47 .145
Parent PSS .317 .034 3.36 .001
Parent total IES .369 .006 3.49 .001
Parent Avoidance .379 .016 3.44 .001
Parent Intrusions .318 .015 3.04 .003
Parent Hyperarousal .340 .018 3.39 .001
Interaction Models
Parent CESD*Hispanic .166 .018 0.89 .375
Parent Positive Affect*Hispanic -.137 .080 -0.55 .580
Parent Negative Affect*Hispanic .093 .043 0.52 .603
Parent Somatic Symptoms*Hispanic .053 .050 0.30 .768
Parent Interpersonal Rel. *Hispanic -.032 .183 -0.16 .870
Parent PSS*Hispanic .198 .065 0.96 .337
88
Parent Total IES*Hispanic -.072 .012 -0.32 .753
Parent Avoidance*Hispanic -.084 .034 -0.33 .741
Parent Intrusions*Hispanic -.088 .030 -0.40 .687
Parent Hyperarousal*Hispanic -.007 .037 -0.03 .974
Note. Results in bold type highlight statistically significant differences. Each line is a separate regression
model controlling for CCS age, CCS sex, parent age, SES, treatment intensity, time since diagnosis,
insurance status, Hispanic ethnicity, and living at home status.
89
Table 4-6.
Adjusted standardized parameter estimates for parent mental health indicators
associated with CCS Posttraumatic Growth, CCS Quality of Life, and all corresponding
subscales
Multivariable Regression Model Results
Outcome: CCS Total Posttraumatic Growth
Main Effect Models SE t p
Parent Perceived Stress -.209 .319 -2.20 .030
Parent Total IES .105 .053 0.96 .339
Parent Avoidance .139 .147 1.23 .221
Parent Intrusions .091 .140 0.85 .400
Interaction Models
Parent CESD*Hispanic -.178 .172 -0.93 .355
Parent Positive Affect*Hispanic .164 .708 0.66 .513
Parent Negative Affect*Hispanic -.134 .401 -0.75 .456
Parent Somatic Symptoms*Hispanic -.122 .450 -0.69 .493
Parent Interpersonal Rel. *Hispanic .066 .161 0.35 .725
Parent PSS*Hispanic -.090 .602 -0.43 .670
Parent Total IES*Hispanic .119 .107 0.51 .610
Parent Avoidance*Hispanic -.030 .307 -0.12 .903
Parent Intrusions*Hispanic .240 .269 1.10 .275
Parent Hyperarousal*Hispanic .074 .339 0.37 .715
Outcome: CCS Appreciation for Life
Main Effect Models
Parent PSS -.213 .067 -2.24 .027
Parent Total IES .101 .011 0.96 .341
Parent Avoidance .150 .030 1.36 .178
Interaction Models
Parent CESD*Hispanic -.040 .036 -0.24 .810
Parent Positive Affect*Hispanic -.030 .145 -0.10 .919
Parent Negative Affect*Hispanic -.030 .083 -0.16 .871
Parent Somatic Symptoms*Hispanic -.050 .094 -0.30 .762
Parent Interpersonal Rel. *Hispanic .122 .332 0.66 .510
Parent PSS*Hispanic .178 .124 0.88 .378
Parent Total IES*Hispanic .342 .021 1.54 .127
Parent Avoidance*Hispanic .165 .062 0.67 .504
Parent Intrusions*Hispanic .449 .054 2.17 .032
Parent Hyperarousal*Hispanic .275 .068 1.43 .156
Outcome: CCS New Possibilities
Main Effect Models
90
Parent Total IES .146 .013 1.33 .186
Parent Avoidance .190 .034 1.68 .096
Parent Intrusions .120 .033 1.12 .265
Parent Hyperarousal .097 .040 0.93 .352
Interaction Models
Parent CESD*Hispanic -.275 .041 -1.41 .162
Parent Positive Affect*Hispanic .221 .164 0.89 .375
Parent Negative Affect*Hispanic -.200 .092 -1.13 .262
Parent Somatic Symptoms*Hispanic -.125 .105 -0.70 .485
Parent Interpersonal Rel. *Hispanic -.122 .375 -0.65 .518
Parent PSS*Hispanic -.164 .139 -0.81 .422
Parent Total IES*Hispanic .106 .024 0.46 .643
Parent Avoidance*Hispanic -.085 .070 -0.34 .735
Parent Intrusions*Hispanic .232 .062 1.08 .282
Parent Hyperarousal*Hispanic .099 .078 0.50 .620
Outcome: CCS Spiritual Growth
Main Effect Models
Parent Total IES .182 .015 1.76 .082
Parent Avoidance .178 .040 1.64 .103
Parent Intrusions .202 .038 2.00 .048
Parent Hyperarousal .126 .611 .047 .638
Interaction Models
Parent CESD*Hispanic -.069 .048 -0.37 .709
Parent Positive Affect*Hispanic .133 .196 0.56 .580
Parent Negative Affect*Hispanic .018 .110 0.11 .914
Parent Somatic Symptoms*Hispanic .046 .126 0.26 .793
Parent Interpersonal Rel. *Hispanic -.014 .446 -0.08 .940
Parent PSS*Hispanic .003 .169 0.02 .987
Parent Total IES*Hispanic .149 .029 0.68 .496
Parent Avoidance*Hispanic .002 .083 0.01 .994
Parent Intrusions*Hispanic .240 .072 1.18 .239
Parent Hyperarousal*Hispanic .145 .092 0.76 .448
Outcome: CCS Relating to Others
Main Effect Models
Parent PSS -.225 .071 -2.36 .020
Parent Total IES .128 .012 1.17 .244
Parent Avoidance .119 .033 1.05 .296
Parent Intrusions .127 .031 1.20 .232
Interaction Models
Parent CESD*Hispanic -.281 .038 -1.47 .145
Parent Positive Affect*Hispanic .199 .156 0.81 .419
Parent Negative Affect*Hispanic -.188 .088 -1.07 .289
Parent Somatic Symptoms*Hispanic -.188 .100 -1.07 .288
91
Parent Interpersonal Rel. *Hispanic .091 .356 0.49 .625
Parent PSS*Hispanic -.115 .131 -0.57 .572
Parent Total IES*Hispanic -.085 .023 -0.38 .707
Parent Avoidance*Hispanic -.116 .067 -0.46 .645
Parent Intrusions*Hispanic -.025 .059 -0.11 .909
Parent Hyperarousal*Hispanic -.092 .739 -0.47 .641
Outcome: CCS Personal Strength
Main Effect Models: NONE
Interaction Models
Parent CESD*Hispanic -.063 .035 -0.32 .752
Parent Positive Affect*Hispanic -.001 .141 -0.03 .975
Parent Negative Affect*Hispanic -.020 .079 -0.11 .914
Parent Somatic Symptoms*Hispanic -.146 .089 -0.80 .424
Parent Interpersonal Rel. *Hispanic .189 .315 1.00 .319
Parent PSS*Hispanic -.016 .121 -0.08 .939
Parent Total IES*Hispanic .189 .021 0.80 .427
Parent Avoidance*Hispanic .004 .060 0.01 .989
Parent Intrusions*Hispanic .312 .053 1.42 .160
Parent Hyperarousal*Hispanic -.056 .067 0.69 .492
Outcome: CCS Total Pediatric Quality of Life
Main Effect Models
Parent CESD Total -.265 .124 -2.79 .006
Parent Negative Affect -.220 .291 -2.29 .024
Parent Somatic Symptoms -.318 .327 -3.50 .001
Parent PSS -.316 .447 -3.39 .001
Parent Total IES -.248 .076 -2.29 .024
Parent Avoidance -.280 .210 -2.50 .014
Parent Hyperarousal -.220 .244 -2.15 .034
Interaction Models
Parent CESD*Hispanic -.186 .248 -0.98 .331
Parent Positive Affect*Hispanic .099 1.061 0.40 .692
Parent Negative Affect*Hispanic -.099 .583 -0.54 .588
Parent Somatic Symptoms*Hispanic -1.15 .643 -0.86 .393
Parent Interpersonal Rel. *Hispanic -.095 2.42 -0.49 .628
Parent PSS*Hispanic -.392 .854 -1.95 .054
Parent Total IES*Hispanic .105 .157 0.45 .654
Parent Avoidance*Hispanic .191 .450 0.75 .457
Parent Intrusions*Hispanic .035 .400 0.16 .875
Parent Hyperarousal*Hispanic .080 .496 0.39 .694
Outcome: CCS Physical Functioning
Main Effect Models
Parent Somatic Symptoms -.192 .446 -2.05 .043
92
Parent PSS -.222 .619 -2.32 .023
Interaction Models
Parent CESD*Hispanic -.218 .336 -1.12 .267
Parent Positive Affect*Hispanic .026 .140 0.10 .919
Parent Negative Affect*Hispanic -.192 .780 -1.04 .299
Parent Somatic Symptoms*Hispanic -.210 .884 -1.20 .232
Parent Interpersonal Rel. *Hispanic -.077 .320 -0.39 .696
Parent PSS*Hispanic -.388 .115 -1.89 .062
Parent Total IES*Hispanic .061 .211 0.26 .799
Parent Avoidance*Hispanic .097 .609 0.37 .711
Parent Intrusions*Hispanic .025 .536 0.11 .911
Parent Hyperarousal*Hispanic .059 .668 0.29 .773
Outcome: CCS Emotional Functioning
Main Effect Models
Parent Total CESD -.296 .165 -3.26 .002
Parent Negative Affect -.269 .392 -2.91 .004
Parent Somatic Symptoms -.307 .446 -3.46 .001
Parent PSS -.306 .604 -3.02 .003
Parent Total IES -.346 .099 -3.35 .001
Parent Avoidance -.351 .275 -3.26 .002
Parent Intrusions -.299 .261 -2.94 .004
Parent Hyperarousal -.322 .317 -3.29 .002
Interaction Models
Parent CESD*Hispanic -.126 .339 -0.68 .495
Parent Positive Affect*Hispanic -.007 .148 -0.03 .977
Parent Negative Affect*Hispanic -.041 .800 -0.23 .817
Parent Somatic Symptoms*Hispanic -.064 .915 -0.37 .715
Parent Interpersonal Rel. *Hispanic -.102 .335 -0.54 .592
Parent PSS*Hispanic -.432 .117 -2.20 .030
Parent Total IES*Hispanic -.046 .208 -0.21 .837
Parent Avoidance*Hispanic -.039 .605 -0.38 .706
Parent Intrusions*Hispanic -.142 .533 -0.67 .505
Parent Hyperarousal*Hispanic -.064 .661 -0.33 .743
Outcome: CCS Social Functioning
Main Effect Models
Parent Total CESD -.228 .121 -2.92 .004
Parent Negative Affect -.232 .285 -2.40 .018
Parent Somatic Symptoms -.319 .321 -3.47 .001
Parent PSS -.318 .441 -3.34 .001
Interaction Models
Parent CESD*Hispanic -.135 .254 -0.69 .490
93
Parent Positive Affect*Hispanic .248 1.08 0.98 .329
Parent Negative Affect*Hispanic .004 .594 0.02 .982
Parent Somatic Symptoms*Hispanic -.099 .672 -0.55 .585
Parent Interpersonal Rel. *Hispanic .021 2.46 0.11 .916
Parent PSS*Hispanic -.317 .886 -1.51 .134
Parent Total IES*Hispanic .093 .162 0.39 .697
Parent Avoidance*Hispanic .047 .367 0.18 .858
Parent Intrusions*Hispanic .086 .413 0.38 .704
Parent Hyperarousal*Hispanic .114 .515 0.55 .583
Outcome: CCS School Functioning
Main Effect Model
Parent Total CESD -.226 .155 -2.28 .025
Parent Positive Affect .125 .650 1.28 .205
Parent Negative Affect -.199 .362 -2.01 .047
Parent Somatic Symptoms -.266 .412 -2.80 .006
Parent PSS -.251 .561 -2.57 .012
Parent Total IES -.190 .094 -1.70 .092
Parent Avoidance -.220 .258 -1.90 .060
Interaction Models
Parent CESD*Hispanic -.065 .308 -0.33 .745
Parent Positive Affect*Hispanic .123 1.30 0.48 .631
Parent Negative Affect*Hispanic .006 .717 0.03 .977
Parent Somatic Symptoms*Hispanic -.045 .816 -0.24 .807
Parent Interpersonal Rel. *Hispanic -.127 2.97 -0.64 .526
Parent PSS*Hispanic -.049 1.08 -0.23 .820
Parent Total IES*Hispanic .296 .190 1.23 .221
Parent Avoidance*Hispanic .451 .543 1.73 .087
Parent Intrusions*Hispanic .196 .486 0.86 .393
Parent Hyperarousal*Hispanic .197 .604 0.95 .346
Outcome: CCS Psychosocial Health Summary
Main Effect Models
Parent Total CESD* -.248 .095 -3.32 .001
Parent Negative Affect* -.233 .220 -3.13 .002
Parent Somatic Symptoms* -.247 .256 -3.38 .001
Parent PSS* -.209 .360 -2.69 .008
Parent total IES* -.258 .056 -3.11 .002
Parent Avoidance* -.268 .157 -3.10 .003
Parent Intrusions* -.221 .148 -2.71 .008
Parent Hyperarousal -.234 .181 -2.97 .004
Interaction Models
Parent CESD*Hispanic -.132 .245 -0.70 .487
94
Parent Positive Affect*Hispanic .129 1.06 0.52 .606
Parent Negative Affect*Hispanic -.016 .575 -0.09 .928
Parent Somatic Symptoms*Hispanic -.081 .650 -0.46 .645
Parent Interpersonal Rel. *Hispanic -.934 2.41 -0.48 .633
Parent PSS*Hispanic -.330 .857 -1.62 .107
Parent Total IES*Hispanic .122 .153 0.53 .600
Parent Avoidance*Hispanic .231 .441 0.91 .365
Parent Intrusions*Hispanic .037 .394 0.17 .867
Parent Hyperarousal*Hispanic .083 .488 0.41 .679
Note. Results in bold type highlight statistically significant differences. Each line is a separate regression
model controlling for CCS age, CCS sex, parent age, SES, treatment intensity, time since diagnosis,
insurance status, Hispanic ethnicity, and living at home status. PTG models also controlled for parent sex,
in addition to the above covariates.
95
CHAPTER 5: STUDY 3
The role of acculturation discrepancy and mental health associations
among Hispanic childhood cancer survivors and their parents.
Rhona I Slaughter, Ann S. Hamilton, Julie A. Cederbaum, Jennifer B. Unger,
Lourdes Baezconde-Garbanati, & Joel E. Milam
Department of Preventive Medicine
Keck School of Medicine
University of Southern California
Contact:
Rhona I. Slaughter
Department of Preventive Medicine, Keck School of Medicine
2001 N. Soto St., 3
rd
Floor
Los Angeles, CA 90032
Phone (714) 732-9864
Email: rslaught@usc.edu
96
Abstract
Hispanic childhood cancer survivors (HCCS) and their parents experience more stress and depressive
symptoms than non-Hispanics. A potential cause for this is acculturation discrepancy, where the parent is
either more Hispanic oriented than the child or the HCCS is more Anglo-American oriented than the
parent. The purpose of this study was to examine the role of acculturation discrepancy in HCCS (and
parent) mental health. This study examined 68 HCCS (M
age
= 19.4(2.77) yrs.; 50.0% female 7.8 (2.11)
years since diagnoses) and their parents (M
age
= 46.3(6.07) yrs.; 89.7% female). HCCS reported on
posttraumatic growth and quality of life measures. Parents reported on posttraumatic stress. Both
completed measures on depressive symptoms, perceived stress, and acculturation. Difference scores were
calculated between the parent and child acculturation measures creating acculturation discrepancy scores
for Hispanic and Anglo-American orientations, respectively. After controlling for demographic and
clinical factors, multiple regression models indicated a significant positive association between Hispanic
discrepancy and HCCS perceived stress and significant positive associations between Anglo-American
discrepancy and posttraumatic growth and pediatric quality of life (PedsQL). Finally, Anglo-American
discrepancy significantly moderated the negative relationship between parent depressive symptoms and
HCCS PedsQL. Possible explanations and implications are discussed. The results of this study suggests
that clinicians pay particular attention to the acculturation rates of both the parent and HCCS in
order to account for cultural differences within the family unit when providing tailored cancer
treatment and follow-up support services.
97
Introduction
Hispanic children in the United States make up one quarter of new cancer diagnoses
annually, and it is expected that 85% of these patients will recover from their cancer treatment
and move into recovery and survivorship (Meeske, et al., 2013; ACS, 2015). These Hispanic
childhood cancer survivors (HCCS) may encounter future secondary issues concerning their
mental health. Among Hispanic children, a psychological distress disparity exists among cancer
and other chronic disease survivors (J. G. Berry, Bloom, Foley, & Palfrey, 2010). Previous
research shows Hispanic ethnicity to be associated with negative mental health outcomes in both
HCCS and their parents. One study found that after the first year of diagnoses, HCCS were more
than three times likely to have anxiety symptoms (Myers, et al., 2014). Children from Spanish-
language homes are also more likely to develop emotional distress problems (Kunin ‐Batson et
al., 2016). Hispanic parents are not immune to the negative mental health disorders that
accompany the child’s cancer experience. Previous research supports Hispanic parents as having
significantly higher rates of depressive symptoms and posttraumatic stress disorder than non-
Hispanic parents of CCS (Meeske, et al., 2013; Virtue et al., 2014).
Among HCCS, Hispanic cultural identity has a protective effect mental health. For
example, HCCS (vs. non-Hispanic) report greater posttraumatic growth from their cancer
experience (Arpawong, et al., 2013; Smith, et al., 2008). In a qualitative study examining the
unique perspective of survivorship among Latino AYA, gratitude, positive outlook, empathy for
others with cancer, spirituality, and improved relationships were among the commonly
experiences reported by Latino AYA after their cancer treatment (B. L. Jones et al., 2010). These
adolescents were able to focus on the positive aspects of their cancer experience, and take away a
positive message with them well beyond their final treatment (Phillips & Jones, 2014).
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Hispanic cancer survivorship is complex and often dependent on a variety factors.
Pinheiro et al (2011) found that in Texas, foreign-born cancer patients of Mexican descent had a
higher death risk than Whites if the cancer type was considered to be moderately fatal, but a
lower risk of death if the cancer type was considered a highly fatal when compared to Whites
(Pinheiro, et al., 2011). Alternatively, US-born cancer patients of Mexican descent had the same
death risk as whites for cancers that were typically highly fatal, and a higher risk of death for
cancers with moderate fatal prognoses (Pinheiro, et al., 2011). This may be due, in part, to
cultural issues faced by non-native Hispanic families, particularly those with US-born children.
Foreign-born Hispanic parents, who have a preference for their mother language and are less
acculturated to the US, report higher levels of stress than US-born Hispanic parents (Meeske, et
al., 2013; Sahler, et al., 2013). Feelings of isolation may also be experienced by non-native
parents as they attempt to navigate their child’s cancer treatment without the support of extended
family and resources (Schaefer & Pozzaglia, 1994). Indeed, perceived social support is
protective against parental psychological distress in both HCCS, and non-HCCS families alike
(Speechley & Noh, 1992).
Acculturation is multidimensional and involves different aspects of retaining one’s ethnic
cultural practices while simultaneously accounting for how much the individual has adapted to
the lifestyle, manners and customs of the new (host) culture (Unger, et al., 2007). The two
(former and current cultures) are not necessarily mutually exclusive, as one can be bi-cultural
(high on both scales) or lacking a cultural identity (low of both scales) (Unger, et al., 2007).
A cultural discrepancy occurs when non-native parents of Hispanic children have not yet
adapted to their host country’s culture in the same manner and timeline as their child. For these
families, parents may be primarily rooted in their native cultural practices which may invite
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conflict with the child as he or she becomes more Anglo-American-oriented (Unger, Ritt-Olson,
Wagner, et al., 2009). Previous research suggests that adolescent Hispanic identity can be
protective against risky health behaviors and some mental health disorders, such as depressive
symptoms (Lorenzo-Blanco, et al., 2011; Unger, Ritt-Olson, Wagner, et al., 2009). This could be
due to the accordance they have with their parents and overall family ethnic identity and cultural
values. As the discrepancy gap widens between Hispanic adolescents’ rate of acculturation and
their parent cultural preference, the risks of substance use and depressive symptoms increase
(Lorenzo-Blanco, et al., 2011; Unger, Ritt-Olson, Wagner, et al., 2009).
According to the Family Systems Theory individuals are interconnected with their family
members emotionally (Bowen, 1974). Thus, thoughts, feelings and emotions of one member can
significantly affect the thoughts, feelings and emotions of other members within the same family
unit. For instance, extra stress and anxiety may be placed on the other household members when
one member is going through a period of psychological distress (Kerr, 2000). Family Systems
Theory is a useful framework when examining how thoughts, feelings and emotions affect
family cohesion among HCCS and their families as family cohesion is essential to the Hispanic
culture and associated with the value placed on the interdependence of the family unit (Sabogal,
et al., 1987; Yi, 2009). Szapocznik and Kurtine’s Theory of Bicultural Family Functioning
further accounts for cultural factors distinctive to the health and daily functioning of the Hispanic
family (Cano, et al., 2016; Szapocznik & Kurtines, 1993). The authors recognized the
importance of understanding the complex relationship between the culture of origin, and the
emerging American culture on immigrant families and extended traditional cultural contexts into
a multicultural platform (Szapocznik & Kurtines, 1993). As adolescents acculturate to more
Anglo-American orientations, the family must redefine traditional roles (e.g., parents try to
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maintain family cohesiveness and may feel their influence or leadership is not being heeded,
while youth who striving for more freedoms and autonomy may feel less support from their
parents) (Szapocznik & Kurtines, 1993). This type of stress may impact the general functioning
of the family unit, and exacerbate mental health and behavioral problems in the child (Cano, et
al., 2016; Szapocznik & Kurtines, 1993). The difference between the rate of acculturation
between parent and child, where the child acculturates to their new environment faster than the
parent, is referred to as acculturation discrepancy (Unger, Ritt-Olson, Wagner, et al., 2009).
Acculturation Discrepancy Theory has been used in a variety of studies to evaluate risky health
behaviors, depressive symptomology, and other mental health conditions in Hispanic youth
(Cano, et al., 2016; Pasch et al., 2006; Unger, Ritt-Olson, Soto, et al., 2009). Unfortunately,
results from the current literature in acculturation discrepancy are conflicting, with some studies
finding detrimental outcomes, some finding protective features, and some with non-significant
results (Pasch, et al., 2006; Unger, Ritt-Olson, Soto, et al., 2009; Unger, Ritt-Olson, Wagner, et
al., 2009; Wiesner, Arbona, Capaldi, Kim, & Kaplan, 2015). Methods are also conflicting with
some studies relying on the youth’s perception of their parents’ cultural orientation, and not the
actual parent’s perspective (Cervantes, Cardoso, & Goldbach, 2015; Unger, Ritt-Olson, Soto, et
al., 2009; Unger, Ritt-Olson, Wagner, et al., 2009). At least one study has included a clinical
Hispanic youth population, but this study examined clinical substance users (Cervantes, et al.,
2015). Very little research has been conducted on the role of acculturation discrepancy among
those with acute or chronic diseases, such as cancer. This serious childhood medical condition
can have a marked effect on the mental health of parents, who often report increases in perceived
stress, depressive symptoms, anxiety and lower quality of life (Speechley & Noh, 1992; Witt, et
al., 2010). As presented in Study 2, parent and child negative metal health factors are positively
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correlated with each other. Given the types of additional family stressors that result when an
immigrant child is adapting and assimilating into the host culture faster than their parent, it is
likely that acculturation discrepancy exacerbates these deleterious mental health associations
between parent and HCCS.
Study 3 further expands this line of research from Study 2 to investigate the role of
acculturation discrepancy on these mental health relationships. It was hypothesized that parent-
child acculturation discrepancy (where parent is more Hispanic oriented than their child, and/or
HCCS is more Anglo-American oriented than their parent) will be associated with higher levels
of negative mental health symptoms in HCCS after controlling for demographic and clinical
covariates. Additionally, acculturation discrepancy will be inversely related to positive mental
health outcomes in HCCS after controlling for demographic and clinical covariates. Finally,
acculturation discrepancy will moderate the relationships between parent and child mental
associations after controlling for demographic and clinical covariates. Specifically, it is
hypothesized that:
H
1
: Hispanic acculturation discrepancy scores will be positively related with HCCS
depressive symptoms and HCCS perceived stress, and negative correlated with HCCS
posttraumatic growth and HCCS quality of life.
H
2
: Anglo-American acculturation discrepancy scores will be positively related with
HCCS depressive symptoms and HCCS perceived stress, and negative correlated with
HCCS posttraumatic growth and HCCS quality of life.
H
3
: Parent-child acculturation discrepancy scores will significantly moderate the
associations between parent depressive symptoms; parent perceived stress, parent
posttraumatic stress, HCCS depressive symptoms HCCS perceived stress, HCCS
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posttraumatic growth and HCCS pediatric quality of life, such that the positive
relationships between parent negative mental health and CCS negative mental health
will be stronger in dyads that have greater acculturation discrepancy; likewise, the
negative relationships between parent negative mental health and CCS positive
mental health will be stronger in dyads that have greater acculturation discrepancy.
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Methods
Participants and procedure. The data for this study was taken from the subset data in Study
2 to examine the 68 matched Hispanic-only parent/child dyads (parent: M
age
= 46.3 (6.07),
89.7% female; and child: M
age
= 19.4 (2.77), 50.0% female and at least two years beyond
their last cancer treatment. Comparisons between HCCS included in this study (N = 68) and
64 HCCS excluded from the study (from lack of parent participation or excluded due to
current/recent treatment as noted above) were examined to assess potential biases. No
significant differences were seen between the two groups regarding HCCS age, sex,
insurance status, SES, or treatment intensity, living at home or hospital nor were there any
significant differences between participants and excluded patients among any of the indicator
or outcome main variables of interest. Among the parents of excluded participants (N = 20)
and the study participant parents (n = 68) no significant differences in parent age or parent
sex were found. Finally, there were not significant differences between study group and
excluded group on Hispanic acculturation or Anglo-American acculturation for either the
HCCS or their parents.
Measures. A complete list of each measure is located in the Appendix.
Posttraumatic Growth Inventory - SF. Posttraumatic growth was measured by the PTGI
short form (Tedeschi & Calhoun, 1996). This is a 10-item measure is a shortened form of the
original PTG questionnaire (Tedeschi & Calhoun, 1996). The PTGI-SF has been previously
validated among HCCS populations ( = 0.87, = 0.95) (Yi & Kim, 2014; Yi, et al., 2015). This
measure reflects different areas of positive personal growth as a result of a traumatic experience
and includes five subscales: Relating to Others (for example “I have a greater sense of closeness
with others”), New Possibilities “I established a new path for my life”, Personal Strength “I am
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able to do better things”, Spiritual Change “I have a better understanding of spiritual matters”,
and Appreciation of Life “I have a greater appreciation for life”, as well as an overall composite
score. Participants rated to what degree their cancer experience had influenced their lives on a 6-
point Likert-type rating scale ranging from 0 (“I did not experience this change as a result of my
crisis.”) to 5 (“I experienced this change to a very great degree as a result of my crisis.”). A PTG
total mean score was calculated from all 10 items, where higher scores indicate more growth
from the traumatic experience. Mean scores for each of the five subscales were also created,
consisting of two items each. The Cronbach alpha for the Hispanic-only sample was .93.
Pediatric Quality of Life. The PedsQL measure was developed by Varni, Seid and Kurtin
(2001) for the purpose of measuring several aspects of psychosocial and health functioning
experienced by adolescents and young adults (Varni, et al., 2001). The physical health summary
score and psychosocial functioning summary scales have been validated previously among
childhood cancer survivors ( = 0.89 and = 0.87, respectively) (Arpawong, et al., 2013). The
PedsQL is a 23-item measure that includes several aspects of psychosocial and health
functioning experienced in the past month. Physical Health (It is hard for me to do sports activity
or exercise), Emotional Functioning (I have trouble sleeping), Social Functioning (it is hard for
me to keep up with my peers), and School functioning (Other teens tease me). Responses were
made on a 5-point Likert-type rating scale ranging from never to almost always. A total mean
composite score of all the items was calculated to create an overall Psychosocial Health
Summary Score. Mean scores for each of the four subscales, Physical Health (8 items),
Emotional Functioning (5 items), Social Functioning (5 Items), and School Functioning (5
items), were also created. The Cronbach alpha for the Hispanic-only sample was .92 for the total
PedsQL.
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Center for Epidemiological Studies Depression Scale. The CESD is a 20-item measure
comprised items taken from a variety of depressive symptoms scales (Radloff, 1977). This
measure has been validated previously among childhood cancer survivors and parents of HCCS
populations ( = 0.91 and = 0.84, respectively) (Arpawong, et al., 2013; Meeske, et al., 2013).
In order to capture current depressive symptoms, participants are asked if they have felt a
particular way in the past 7 days. Items include 16 negatively worded questions, for example “In
the past week…I had trouble shaking off sad feelings” and 4 positively worded items, “In the
past week…I felt that I was just as good as other people” which are reverse coded for analyses.
Responses range from 0 meaning they rarely feel this way (0 – 1 days in the past week) to 3
meaning almost the entire week (5 -7 days in the past week). A total composite score was
calculated by summing all 20 items of the scale for a possible score between 0 to 80 points. This
measure is also broken down into four subscales. Negative Affect (7 items) measures the amount
to depressive symptoms one is feeling, such as loneliness, or having the blues. Positive Affect (4
items) refers to happiness and hope. Interpersonal Problems (2 items) accounts for negativity
among relationships, and Somatic Symptoms (7 items) captures activity related aspects of
depressive symptoms, such as eating and sleeping issues (Radloff, 1977). Each subscale was also
received a summed score. Cronbach alpha scores for total depressive symptoms was excellent for
HCCS and good for Hispanic parents ( = .92 and .85, respectively).
Perceived Stress Scale. The Perceived Stress Scale (PSS-4) by Cohen, Kamarck &
Mermelstein (1983) measures the degree to which an individual perceives the current
stressfulness in their lives (Cohen, et al., 1983). Psychometric properties for the PSS-4 are
considered reliable (Cronbach alpha = 0.77) in the normative population (Warttig, et al., 2013),
and used in a variety of clinical populations among children and parents including parental stress
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on childhood asthma, and maternal postpartum stress studies (Milam, et al., 2008; Park, et al.,
2015). The PSS-4 contains four items designed to measure the amount of perceived stress
experienced within the past month. The scale has two negatively worded items (such as, felt that
you were unable to control the important things in your life), and two positively worded items
(such as felt confident about the ability to handle your problems) that are reverse coded for
analysis. Answer responses on a 5-point Likert-type scale ranged from 0 = Never, indicating the
participant has not felt this way at all in the past 30 days, to 4 = Very Often, which indicates that
participant has felt this way for at least half of the month (15+ days). Scores were summed to
create a total perceived stress score for each participant with a possible range from 0 to 16 points.
Cronbach alphas for HCCS and parent PSS in this sample was .54 and .69, respectively
(consideration for the problematic reliability score is addressed in the discussion).
Impact of Event Scale. Posttraumatic Stress Disorder in parents was measured using the
Impact of Event Scale-Revised measure by Weiss and Marmar (1997). The scale used in this
study was designed to capture current distressing feelings (e.g., I had waves of strong feeling
about it), somatic issues (e.g., I had trouble falling asleep), physical symptoms (e.g., sweating or
a pounding heart), and other stressors that had been experienced in the past week as a direct
result of their child’s cancer situation (Weiss & Marmar, 1997). Parents indicated to what degree
these difficulties bothered them on a scale from 0 (not at all) to 4 (extremely). Items were
summed to create scores in the possible range from 0 to 88 points, than averaged to create
individual mean scores. The IES-R also includes three subscales: Avoidance (8 items to assess
the degree to which the parent will try to avoid any reminders about the traumatic event),
Intrusions (8 items which measure the degree to which the parent has recurring intrusive thought
about the traumatic event) and Hyperarousal (6 items to evaluate the physiological symptoms of
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PTSD, such as feeling panicky and anxious, and/or difficulty concentrating or sleeping)
(Dorland, 1959). These scores for these subscales were also created as mean scores as
recommended by the authors to allow for cross comparisons on a scale from 0 – 4 (Weiss &
Marmar, 1997). This 22-item scale has been validated among parents of children suffering
trauma and found to be highly reliable (Cronbach’s alpha =0.95) and recommends using a cut-
point of 1.5 to diagnose clinical levels of stress(Cacciatore, et al., 2013). Cronbach alpha for the
Hispanic-only sample was .97
Acculturation Rating Scale for Mexican Americans-II. The ARSMA-2 measures how
much an individual identifies or is oriented towards to Hispanic and/or Anglo-American culture
(Cuéllar, et al., 1995). This measure has been validated among studies identifying Hispanic and
Anglo-American orientations in adolescents and young adults ( = 0.90 and = .74,
respectively) (Grigsby, Forster, Soto, Baezconde-Garbanati, & Unger, 2014) and in older adult
populations ( = 0.87 and = .82, respectively) (Lessenger, 1997). It is important to note that
this scale was only given to Project Forward participants who had identified as being Hispanic or
Latino. Participants answer a variety of question regarding their language preferences in print
material, television viewing, etc. as well as their friendship preferences. Items include “I enjoy
speaking Spanish” and “My friends are of Anglo-American or White origin”. The scale is
divided into two distinct orientations: Hispanic Orientation (6 items) and Anglo-American
Orientation (7 items). Answer possibilities ranged from 1 for Not at all, to 5 for almost
always/extremely often. Items were summed and then averaged to yield a mean Hispanic
Acculturation and a mean Anglo-American Acculturation (possible scores from 0 – 4) for each
HCCS. Cronbach alphas for this sample ranged were .92 and .89 for HCCS and Parent Hispanic
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Orientation, respectively; and .72 and .94 for HCCS and Parent Anglo-American Orientation,
respectively;
Acculturation discrepancy measure. The acculturation discrepancy measure was
calculated using a procedure described in previously published literature using both scales from
the ARSMA-2 (Unger, Ritt-Olson, Soto, et al., 2009). The discrepancy variables will utilize both
the Anglo-American (US) acculturation scores and the Hispanic Acculturation scores among
parents and HCCS. Following the procedure as in the established prior literature, these
acculturation scores were standardized (M = 0, SD = 1) (Unger, Ritt-Olson, Soto, et al., 2009).
Two separate scores were calculated. First, an Anglo-American orientation discrepancy scale
was calculated by subtracting the parent’s Anglo-American score from the HCCS’s Anglo-
American score. The higher the Anglo-American discrepancy score, the more Anglo-American-
oriented the HCCS is than their parent. A second Hispanic orientation discrepancy score was
subtracting the HCCS’s Hispanic score from the parent’s Hispanic score. The higher the
Hispanic discrepancy score, the more Hispanic-oriented the parent is than the HCCS (Unger,
Ritt-Olson, Soto, et al., 2009).
Covariates. Demographic, parent and family, clinical and system level covariates were
addressed in this study including age, sex, socio-economic status, parent’s age, parent’s sex,
living at home status, cancer diagnoses, cancer treatment intensity, number of years since
diagnoses, cancer treatment hospital site, and insurance status. The proxy for socio-economic
status was neighborhood-specific census track data provided by the cancer registry and treatment
intensity was calculated using the Intensity of Treatment Rating Scale 2.0 (ITR-2) (Werba, et al.,
2007), categorizing treatments into four levels of intensity: 1 = least intensive (e.g., surgery
only), 2 = moderately intensive (e.g., chemotherapy or radiation), 3 = very intensive (e.g., two or
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more treatment modalities), 4 = most intensive (e.g., relapse protocols). Anglo-American
discrepancy was controlled for in all Hispanic discrepancy models, and vice versa.
Statistical analyses plan. SAS statistical software (version 9.2) was utilized to observe
univariate associations and multivariate regression models. Preliminary analyses was evaluate
parent level predictors of posttraumatic stress, perceived stress and depressive symptoms, as well
as, HCCS level outcomes of perceived stress, depressive symptoms, posttraumatic growth, and
quality of life. Two acculturation discrepancy scores will be calculated, each representing the
gap between HCCS and parent orientations in Hispanic and Anglo-American cultures, and
examined as potential moderators between parent and child mental health relationships.
During preliminary analyses, the dataset will be analyzed for any statistical violations of
assumptions (including normality, outliers, etc.). Descriptive statistics will be calculated for all
variables of interest and missing data will be assessed and mean imputation strategies will be
employed for the continuous variables, if necessary. In addition, Pearson correlations among the
dependent variables and covariates will be examined to determine covariates. Potential
demographic and clinical covariates related to the dependent variables at p < .10 will be included
in multivariate regression analyses (only those associated to the discrepancy variables at the p
< .10 bivariate significance level). All parent level indicators will be examined for each of the
HCCS outcomes in the acculturation discrepancy moderation models, and each pair will be
modeled twice (using Anglo-American and Hispanic discrepancy scores as separate moderators)
using proc glmselect statements to obtain standardized estimates of the predictor variables.
For significant moderation findings, further post hoc testing will be conducted using proc glm to
estimate and compare simple slopes of models at three different values of Hispanic/Anglo-
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American discrepancy scores (values = the mean, mean minus 1 standard deviation, and mean
plus 1 standard deviation) (UCLA: Statistical Consulting Group, 2016).
Results
Descriptive characteristics. The sample consisted of 68 Hispanic parent/child dyads.
HCCS were M = 19.35 (2.77) years old, and 50% female. The parents of the HCCS were M =
46.32(6.07) years old, and 89.7% female. Among sociodemographic factors, a high percentage of
HCCS reported living at home (85.3%) and a 73.5% were categorized into the medium-low
(33.8%) or lowest (39.7%) quintile representing socioeconomic status. Sixty-two percent
reported having some type of medical insurance (vs. not having any). Clinically, almost half the
patients underwent a very intensive treatment regime (48.5%) and the average time since their
diagnosis to survey date was 7.8 years (SD = 2.11). Table 5-1 displays the full descriptive
statistics of demographic and clinical variables for HCCS and their parents, and Table 5-2
contains descriptive information on the study variables of interest. On average, HCCS scored
higher on the Anglo-American orientation scale (vs. Hispanic orientation, M = 4.14(0.53), M =
3.29(1.12), respectively) and parents scored higher on the Hispanic orientation (vs. Anglo-
American orientation, M = 4.19(0.93), M = 3.01(1.25) respectively). Acculturation discrepancy
scores were standardized to create the Hispanic and Anglo discrepancy scores (M = 0, SD = 1).
One outlier was excluded from the Anglo-American discrepancy measure (Anglo zscore = -
4.83). Refer to Figure 5-1 for an itemized comparison of each acculturation measure.
Bivariate Correlations. Very few significant correlations were found between the study
variables and the demographic/clinical factors. HCCS positive affect was significantly associated
with having older parents, and HCCS age was negatively associated with physical health scores
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(both p’s < .05). Among the parents, treatment intensity was significantly positively associated
with PTSD, Avoidance, Intrusions, and Hyperarousal; and lower SES was significantly
associated with higher intrusion scores (all p’s < .05). Detailed bivariate associations between the
potential demographic covariates and the main study variables of interest are presented in Table
5-3.
Zero-order Correlations. Noteworthy zero-order correlations for the variables of
interest are briefly described here, with all results presented in Table 5-4. HCCS perceived stress
was not significantly correlated with any of the parent-level mental health indicators. HCCS
depressive symptoms, including negative affect, somatic symptom and interpersonal problem
subscales, were positively significantly associated with parent posttraumatic stress (including
avoidance, intrusions and hyperarousal subscales) and total parent depressive symptoms
(including negative affect and somatic symptoms). The HCCS positive affect subscale of the
CESD was significantly negatively associated with total parent depressive symptoms (also
including negative affect and somatic symptoms). Parent perceived stress and somatic symptoms
were significantly negatively correlated with many of the HCCS positive mental health
outcomes, including total PTG, relating to others, personal strength, overall quality of life
(PedsQL) as well as the PedsQL subscales (physical health; emotional, social and school
functioning, and the psychosocial summary score). Parent total depressive symptoms were also
significantly negatively related to subscales; emotional, social and school functioning.
Multivariable regression hypotheses testing. Although there were few significant
correlations found among the study variables and the demographic/clinical variables, all main
effect models included HCCS age, HCCS sex, parent age, SES, treatment intensity, years since
diagnoses, living at home, and insurance status to address theoretical relationships regardless of
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their statistical significance. Next, the zero order correlation matrix (see Table 5-4) was used as a
guideline to determine which HCCS mental health outcome were modeled. HCCS age, sex,
treatment intensity and insurance status were found to be highly correlated with the other
covariate factors, therefore only these four variables were incorporated into each moderation
model to avoid multicollinearity issues. The results for all multivariate models are displayed in
Table 5-5.
HCCS perceived stress.
Main effect. As hypothesized, Hispanic discrepancy scores were positively associated
with HCCS perceived stress, indicating that HCCS reported higher levels of perceived stress
when the parent was more Hispanic acculturated they were.
Moderation. None of the interaction models of the relationship between parent negative
mental health indicators and HCCS PSS were moderated by either acculturation discrepancy
measure.
HCCS depressive symptoms.
Main effect. At the bivariate level, only one relationship (HCCS positive affect and
Anglo-American discrepancy) was significant among all of the HCCS depressive symptom total
and subscales and the two discrepancy measures. - After controlling for the covariates and
Hispanic discrepancy, positive affect was found to be significantly negatively correlated with
Anglo-American discrepancy. When the HCCS was more Anglo-American oriented than the
parent, they reported less positive affect.
Moderation. None of the interaction models of the relationship between parent negative
mental health indicators and HCCS total depressive symptoms, negative affect, positive affect, or
interpersonal relations were significantly moderated by either acculturation discrepancy measure.
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HCCS posttraumatic growth.
Main effect. There were significant positive relationships between Anglo-American
discrepancy and total PTG, and the PTG subscales of new possibilities, spiritual growth, relating
to others, and personal strength after controlling for the covariates and Hispanic discrepancy, -.
The more Anglo-American oriented the HCCS is than the parent, the greater amount of
posttraumatic growth, experiencing new possibilities, spiritual growth, relating to others and
personal strength were experienced by the HCCS.
Moderation. None of the interaction models of the relationship between parent negative
mental health indicators and HCCS total posttraumatic growth, and PTG subscales of
appreciation for life, new possibilities, spirituality or relating to others were significantly
moderated by either acculturation discrepancy measure. Anglo-American
HCCS pediatric quality of life.
Main effect. A set of regression models which included the covariates and Hispanic
discrepancy were computed to examine the relationship between Anglo-American acculturation
discrepancy and HCCS total pediatric quality of life, emotional functioning, physical health,
school functioning, social functioning and overall psychosocial health. Significant positive
relationships were found between Anglo-American discrepancy and total PedsQL, physical
health, and social functioning, signifying that higher levels of pediatric total quality of life,
physical health, and social functioning were reported by the HCCS when they were more Anglo-
American oriented than the parent.
Moderation. There were seven significant interactions for quality of life: one for total
PedsQL and three for each of the PedsQL subscales; physical health and social functioning. First,
the negative association between total PedsQL and parent total depressive systems was strongest
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when Anglo-American discrepancy was low and not significant when the discrepancy was high
(Figure 2). A similar relationship was observed between the HCCS social functioning subscale
and parent total depressive symptoms and the CESD subscales of negative affect and somatic
symptoms, where the negative associations were strongest when Anglo-American discrepancy
was low, and not significant when the discrepancy was high (Figures 3-5). A slightly different
pattern emerged for the PedsQL subscale of physical health summary score. The significant
correlation of parent total depressive symptoms and physical health summary score was
negatively associated when Anglo-American discrepancy was low; but found to be significantly
positively correlated when Anglo-American discrepancy was high (Figures 6-8).
Discussion
Present findings. The majority of the significant findings in this study were in the
opposite predicted direction. Contrary to the study’s main effect hypotheses, positive HCCS
mental health outcomes, including PTG (and subscales of new possibilities, spirituality, relating
to others) and PedsQL (including subscales of social functioning and physical health summary)
were significantly positively correlated to Anglo-American discrepancy. This suggests that the
more Anglo-American oriented the child is than their parent, greater the PTG and quality of life
experiences are reported by the HCCS. A possible shared mechanism of adaptation may be
responsible for this relationship. Psychological adaptation in the acculturation literature refers to
the individual’s ability to successfully navigate their new cultural environment in a way that
promotes psychological health and well-being (J. W. Berry, 1997). In the chronic disease
literature, adaptation refers to the patient’s ability to successfully cope with their new
circumstances and is often both a precursor and a result of posttraumatic growth (Milam, 2003).
It is possible that the overlap in adaptation during the acculturation process at the same time
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there is adaptation to the cancer experience is associated with greater PTG. Another possible
explanation is that HCCS with higher Anglo-American orientation are more likely to speak, read,
and understand English, in some cases better than the parent. There is a fairly new line of
research among immigrant children referred to as “language brokers”. These children are
responsible for interpreting for their parents regarding their medical treatment and oftentimes,
these situations are complex and require a certain level of maturity (Morales & Hanson, 2005).
Perhaps this level of involvement by the HCCS promotes their health literacy rate which could
also promote PTG or quality of life (Adams, 2010). Lastly, HCCS who are more Anglo-
American oriented are presumed to spend time outside the family with their ‘Americanized’
friends, drawing on the emotional and social support of their peers. Yi et al. (2015) notes that
among adolescent cancer survivors peer social support was positively correlated with PTG,
particularly among nonwhite CCS (Yi, et al., 2015).
In addition to the main effect findings, the results of this study also revealed that Anglo-
American discrepancy significantly moderated parent and child mental health relationships. The
negative relationship between parental total depressive symptoms and child total PedsQL was
strongest when Anglo-American discrepancy between parent and child was low. Conversely, a
positive association was noted between parent total depressive symptoms and child physical
health summary when the Anglo-American discrepancy between the child and parent was high.
Although this did not support the projected hypotheses, it did confirm the general concept that
acculturation discrepancy is associated with parent and child mental health relationships. One
possible explanation for the findings is that the discrepancy itself is related to positive mental
health outcomes. Among parents who have low Anglo-American orientation, inadvertent
encouragement of “accelerated assimilation” may reflect a similar process as PTG (Phillips &
116
Jones, 2014). Further work examining these relationships in non-cancer populations (and/or with
varying types of adverse life events) is needed.
Finally, HCCS PSS was positively associated with Hispanic acculturation discrepancy.
CESD subscale, positive affect, was negatively associated with Anglo-American discrepancy.
These findings are consistent with prior work on acculturation stress. As expected, when the
parent was more Hispanic oriented than the child, the HCCS reported higher perceived stress.
This research supports prior empirical research on perceived stress and cultural issues among
Hispanic adolescents (Romero & Roberts, 2003). There are also some alternative thoughts
regarding language brokers who are not developmentally or emotionally ready to handle the
responsibilities that come with interpreting, which can be reflected in psychological distress
(Morales & Hanson, 2005). However, there was no indication of language brokering in the
context of Hispanic healthcare self-efficacy in the current dataset (data not shown). Nevertheless,
given the questionable validity of the PSS measure in this study sample, further examination and
validation of this measure for use among Hispanic-only childhood cancer survivors is warranted.
Strengths and limitations. One of the primary strengths of this study is the large
number of HCCS/parent dyads completing the study. Much of the previous research on
acculturation discrepancy relies on youth perception of the parent’s responses, whereas this study
measured authentic parent responses to compare with HCCS responses (Unger, Ritt-Olson,
Wagner, et al., 2009). This study adds to the growing body of Hispanic cancer survivorship
literature among CCS and their parents.
The study also comes with limitations to consider when generalizing the findings. First,
the sample was collected from a large urban region in the United States, and may only be
generalizable to comparable metropolitan areas with similar ethnic makeup. There are also
117
limitations in the study design, as cross-sectional data can only capture a specific moment in time
and cannot be used to infer causal relationships. The data is also self-reported by the HCCS and
the parent, which may not be as accurate as multiple or more objective methods of collection.
Future research is needed to follow HCCS longitudinally to assess long-term and causal
relationships, as well as further examine how the moderating role of Anglo-American
acculturation discrepancy changes over time. In addition, acculturation subgroups should be
included to examine potential differences between parents and CCS of varying Hispanic
subcultures, particularly by country of origin (Carlton-Smith & Skeer, 2015).
Conclusion. The findings from this study inform the current literature by empirically
filling the gap in Hispanic childhood cancer survivorship research concerning acculturation
discrepancy and parent-child mental health relationships. The positive associations between
Anglo-American acculturation discrepancy and positive mental health outcomes in HCCS imply
that the child’s mental health may not be reflective of the familial conflict that can sometimes
arise when the child acculturates faster than the parent. More research is needed to evaluate
additional mechanisms that contribute to PTG and quality of life in HCCS of bicultural families.
In the meantime, clinicians should pay particular attention to the acculturation rates of both the
parent and HCCS in order to account for cultural differences within the family unit when
providing tailored support services.
118
Table 5-1.
Descriptive statistics of key demographic and clinical variables for HCCS and their
parents
Characteristic
Hispanic
(N = 68 dyads)
n
Mean(SD)/Percentage
HCCS Age 68 M=19.35 (2.77)
HCCS Sex
Male 34 50.0
Female 34 50.0
Parent Age 68 M=46.32 (6.07)
Parent Sex
Male 7 10.3
Female 61 89.7
Living at home
Yes 58 85.3
No 10 14.7
SES M=1.99 (1.04)
1
st
Quintile (Lowest SES)
27 39.7
2
nd
Quintile
23 33.8
3
rd
Quintile
12 17.7
4
th
Quintile
4 5.90
5
th
Quintile (Highest SES)
2 2.90
Treatment Intensity M = 2.57(.780)
1 (least intensive)
6 8.80
2
23 33.8
3
33 48.5
4 (most intensive)
6 8.80
Years since diagnosis 68 M=7.79 (2.11)
Hospital
Children’s Hospital Los Angeles 61 89.7
Miller Children’s Long Beach 7 10.3
Health Insurance
Any (public or private)
42 61.8
None/Not Sure
25 38.2
119
Table 5-2.
Descriptive statistics of outcome variables of interest for HCSS and indicator variables
of interest for the parent indicator variables of interest
HCCS Level
(N=68)
Outcome Variables Min Max Mean (SD)
CCS Perceived Stress 0 13 5.28(2.99)
CCS Total Depressive Symptoms 0 46 15.0(11.8)
Positive affect 0 12 8.44(3.17)
Negative affect 0 21 4.74(5.46)
Somatic symptoms 0 16 5.94(3.85)
Interpersonal problems 0 6 0.91(1.29)
CCS Total Posttraumatic Growth 0 50 38.6(10.9)
Appreciation of Life 0 10 8.52(2.13)
New Possibilities 0 10 7.58(2.37)
Spiritual 0 10 6.95(2.79)
Relating to Other 0 10 7.73(2.33)
Personal Strength 0 10 8.52(2.01)
CCS Total Pediatric Quality of Life 16.3 98.9 75.5(17.4)
Physical Health
Summary
0 100 77.2(23.3)
Emotional Functioning 10 100 69.6(23.6)
Social Functioning 10 100 87.4(17.1)
School Functioning 15 100 66.6(20.6)
Psychosocial Health
Summary
15 98.3 74.5(16.4)
HCCS Hispanic Orientation 1 5 3.29(1.12)
HCCS Anglo-American Orientation 1 5 4.11(0.57)
Parent Level
(N=68 dyads)
Indicator Variables Min Max Mean (SD)
Parent Total Impact of Event Scale 0 84 36.3(23.7)
Avoidance subscale 0 32 14.1(8.76)
Intrusions subscale 0 30 13.4(8.91)
120
Hyperarousal subscale 0 24 8.76(7.19)
Parent Perceived Stress 0 14 6.14(3.58)
Parent Depressive Symptom Total 0 56 17.9(13.0)
Positive affect 0 11 6.73(2.88)
Negative affect 0 20 6.29(5.70)
Somatic symptoms 0 21 5.87(4.79)
Interpersonal problems 0 6 1.21(1.65)
Parent Hispanic Orientation 1 5 4.13(0.95)
Parent Anglo-American Orientation 1 5 3.01(1.27)
121
Table 5-3.
Bivariate associations between main-effect study variables and potential demographic covariates
HCCS LEVEL
HCCS
age
HCCS
sex
Parent
age
Parent
sex
Living
At
Home SES
Treatment
intensity
Years
since
Diagnosis
Insurance
status
Outcome Measures
ref =
male)
ref =
male
ref = not
home
ref = no
insurance
CCS Perceived Stress 0.17 -0.07 -0.05 0.10 -0.09 -0.03 0.13 0.17 -0.15
CCS Total Depressive Symptoms 0.13 0.01 -0.08 0.08 -0.01 -0.18 0.13 0.05 -0.11
Positive Affect -0.13 0.12 0.26** -0.11 0.06 0.14 -0.11 -0.13 0.18
Negative Affect 0.12 0.16 -0.03 0.07 0.04 -0.14 0.07 0.00 -0.07
Somatic Symptoms 0.05 -0.08 -0.06 0.03 -0.04 -0.21 0.12 0.02 -0.06
Interpersonal Problems 0.14 0.05 0.08 0.05 0.07 -0.15 0.17 0.16 -0.16
CCS Total Posttraumatic Growth -0.09 0.07 -0.14 -0.11 -0.05 0.06 0.08 0.12 0.03
Appreciation of Life -0.21 0.16 -0.08 -0.10 -0.01 0.00 0.13 0.04 0.02
New Possibilities -0.12 0.01 -0.03 -0.08 -0.05 -0.03 0.17 0.08 0.15
Spiritual -0.09 0.07 0.04 -0.12 -0.02 0.08 0.06 0.10 0.16
Relating to Other -0.08 0.18 -0.10 -0.11 -0.01 -0.03 0.00 0.13 0.09
Personal Strength -0.19 -0.01 -0.03 -0.01 -0.03 -0.04 0.07 -0.02 -0.09
CCS Total Pediatric Quality of Life -0.16 -0.13 -0.02 0.00 -0.01 0.04 0.07 -0.12 0.17
Physical Health Summary -0.26** -0.16 -0.02 0.04 0.00 0.03 0.18 -0.08 0.16
Emotional Functioning -0.13 -0.19 -0.07 -0.04 0.01 0.06 -0.05 -0.05 0.18
Social Functioning -0.18 0.01 -0.01 0.05 0.07 -0.07 -0.02 -0.21 0.19
School Functioning 0.14 -0.03 0.06 -0.06 -0.10 0.09 0.03 -0.12 0.01
Psychosocial Health Summary -0.07 -0.10 -0.01 -0.03 -0.01 0.04 -0.02 -0.14 0.16
PARENT LEVEL
Parent Total Impact of Event Scale -0.01 -0.06 0.17 0.04 0.08 -0.19 0.29** -0.16 -0.09
Avoidance subscale 0.00 -0.01 0.18 -0.01 0.05 -0.12 0.23** -0.09 -0.12
Intrusions subscale 0.01 -0.10 0.15 0.05 0.11 -0.24** 0.30** -0.18 -0.09
Hyperarousal subscale -0.03 -0.08 0.14 0.08 0.06 -0.17 0.30** -0.19 -0.03
122
Parent Perceived Stress 0.03 -0.15 -0.11 0.15 -0.01 -0.20 0.18 -0.20 -0.03
Parent Total Depressive Symptoms -0.05 -0.19 -0.02 0.09 -0.05 -0.09 0.13 -0.08 0.01
Positive affect 0.02 0.23 0.08 0.05 0.02 -0.07 -0.14 0.21 -0.03
Negative affect 0.00 -0.12 0.03 0.09 -0.07 -0.15 0.13 -0.04 -0.01
Somatic symptoms -0.01 -0.17 -0.06 0.09 -0.05 -0.05 0.15 -0.10 0.01
Interpersonal problems -0.03 -0.09 -0.05 0.13 -0.15 -0.11 -0.02 0.03 -0.16
Note. Results in bold type highlight statistically significant differences.
*p < .05; **p < .01; ***p < .001
123
Table 5-4.
Zero order correlations among main study variables, and ethnic and acculturation variables for HCCS and parents
Study Variables of
Interest
Parent
Impact of
Event
Scale
Parent
Avoidance
Parent
Intrusions
Parent
Hyper-
arousal
Parent
Perceived
Stress
Parent
Depressive
Symptoms
Parent
Positive
Affect
Parent
Negative
Affect
Parent
Somatic
Symptoms
Parent
Inter-
personal
Problems
Parent
Hispanic
Orientation
Parent
Anglo-
American
Orientation
Hispanic
Accult.
Discrep.
Anglo-
American
Accult.
Discrep.
HCCS Perceived Stress 0.13 0.11 0.15 0.11 0.20 0.21 -0.05 0.18 0.21 0.08 -0.04 0.07 0.25* -0.08
HCCS Total Depressive Sym. 0.29* 0.24* 0.28* 0.31* 0.40*** 0.36** -0.12 0.34** 0.32** 0.13 -0.10 -0.03 0.10 -0.22
Positive Affect -0.09 -0.06 -0.07 -0.13 -0.23 -0.28* 0.13 -0.25* -0.26* -0.18 0.14 -0.15 -0.10 0.33**
Negative Affect 0.30* 0.24* 0.31* 0.32** 0.38** 0.29* -0.05 0.29* 0.25* 0.07 -0.07 -0.10 0.07 -0.11
Somatic Symptoms 0.29** 0.25* 0.30* 0.27* 0.40** 0.35** -0.15 0.31** 0.34** 0.13 -0.11 -0.07 0.10 -0.19
Interpersonal Problems 0.34* 0.35** 0.28* 0.35** 0.38** 0.42*** -0.22 0.40*** 0.32** 0.20 0.10 -0.01 0.13 -0.16
Total Posttraumatic Growth 0.09 0.08 0.12 0.05 -0.27* -0.21 0.09 -0.14 -0.26* -0.12 0.21 -0.08 -0.21 0.34**
PTG - Appreciation for Life 0.18 0.16 0.20 0.14 -0.21 -0.21 0.17 -0.14 -0.24 -0.15 0.18 -0.02 -0.04 0.21
PTG - New Possibilities 0.17 0.14 0.21 0.13 -0.27* -0.18 0.10 -0.06 -0.21 -0.14 0.25* -0.07 -0.17 0.36**
PTG - Spiritual 0.25* 0.20 0.30* 0.20 -0.15 -0.05 -0.03 0.05 -0.10 -0.08 0.26* -0.18 -0.21 0.38**
PTG - Relating to Others 0.09 0.08 0.10 0.06 -0.33* -0.26* 0.17 -0.15 -0.26* -0.13 0.28* -0.15 -0.11 0.45***
PTG - Personal Strength 0.07 0.07 0.09 0.03 -0.18 -0.21 0.08 -0.16 -0.29* -0.16 0.16 -0.04 -0.04 0.37**
HCCS Total Quality of Life -0.18 -0.20 -0.15 -0.17 -0.41*** -0.31* 0.12 -0.24* -0.37** -0.07 0.28* -0.03 -0.12 0.24*
Physical Health Summary -0.07 -0.10 -0.05 -0.06 -0.34** -0.17 0.02 -0.14 -0.26* 0.01 0.27* -0.03 -0.03 0.29*
Emotional Functioning -0.32** -0.29* -0.30* -0.33** -0.42*** -0.32** 0.08 -0.28* -0.34** -0.09 0.13 0.08 -0.16 0.15
Social Functioning -0.16 -0.21 -0.11 -0.15 -0.37** -0.31* 0.20 -0.21 -0.35** -0.08 0.17 -0.02 -0.09 0.26*
School Functioning -0.07 -0.08 -0.06 -0.06 -0.23 -0.27* 0.19 -0.19 -0.29* -0.11 0.26* -0.15 -0.14 0.05
Psychosocial Health Sum. -0.24* -0.25* -0.21 -0.24* -0.42*** -0.37** 0.18 -0.29* -0.40*** -0.12 0.24 -0.03 -0.18 0.18
CCS Hispanic Acculturation 0.04 0.06 0.07 -0.02 -0.38** -0.29* 0.07 -0.21 -0.32** -0.16 0.50*** -0.40*** 0.51*** 0.33**
CCS Anglo Acculturation -0.21 -0.13 -0.24* -0.23 -0.35** -0.20 0.16 -0.14 -0.20 -0.12 -0.09 0.17 -0.10 -0.64***
Hispanic Acculturation
Discrepancy 0.20 0.17 0.18 0.22 0.13 0.13 -0.06 0.08 0.06 0.11 0.49*** -0.37** -0.51*** 0.28*
Anglo Acculturation
Discrepancy 0.21 0.19 0.25* 0.17 -0.17 -0.09 -0.03 -0.03 -0.13 -0.09 -0.09 -0.27** -0.05 0.61***
Note. Results in bold type highlight statistically significant differences.
*p < .05; **p < .01; ***p < .001
124
Table 5-5.
Adjusted standardized parameter estimates for the relationship between HCCS
outcomes, Hispanic/Anglo-American acculturation discrepancy, and between HCCS
and parent mental health factors as moderated by Hispanic/Anglo-American
acculturation discrepancy
Multivariable Model Results
Hispanic Discrepancy Anglo Discrepancy
SE t p SE t p
Outcome: HCCS Perceived Stress
Discrepancy Main Effect Model .378 .373 2.97 .008 -.090 .307 -.77 .613
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent Total CESD* -.070 .033 -0.36 .722 .021 .031 0.08 .939
Parent Positive Affect* .523 .146 1.36 .179 -.125 .129 -0.33 .739
Parent Negative Affect* .049 .075 0.27 .791 .010 .067 0.04 .966
Parent Somatic Symptoms* -.025 .086 -0.14 .890 .058 .077 0.25 .806
Parent Interpersonal Relations* .017 .266 0.11 .911 .096 .238 0.58 .563
Parent PSS* .031 .119 0.13 .898 -.131 .089 -0.49 .624
Parent Total IES* -.228 .018 -1.00 .324 .020 .015 0.07 .946
Parent Avoidance* -.257 .047 -1.08 .248 -.021 .042 -0.08 .940
Parent Intrusions* -.232 .048 -0.99 .328 .061 .034 0.22 .823
Parent Hyperarousal* -.129 .061 -0.70 .484 .008 .047 0.03 .974
Outcome: HCCS Depressive Symptoms
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD*
.002 .128 0.01 .991 -.041 .111 -0.15 .879
Parent Positive Affect*
.350 .598 0.84 .406 -.025 .490 -0.07 .948
Parent Negative Affect*
.118 .300 0.63 .530 .044 .247 0.21 .837
Parent Somatic Symptoms*
-.016 .340 -0.09 .931 .133 .286 0.57 .572
Parent Interpersonal Relations*
.140 1.10 0.87 .389 .034 .909 0.20 .840
Parent PSS*
.068 .446 0.29 .771 .050 .319 0.19 .847
Parent Total IES*
-.303 .073 -1.27 .210 -.092 .055 -0.33 .743
Parent Avoidance*
-.284 .193 -1.13 .263 -.229 .156 -0.84 .407
Parent Intrusions*
-.264 .196 -1.08 .287 -.037 .128 -0.14 .889
Parent Hyperarousal*
-.218 .243 -1.16 .252 .033 .175 0.14 .889
Outcome: HCCS Positive Affect
Discrepancy Main Effect Model .110 .400 0.86 .394 -.326 0.316 -2.73 .008
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent Total CESD* .057 .036 0.29 .775 .063 .031 0.25 .806
Parent Positive Affect* -.351 .164 -0.88 .385 -.003 .132 -0.01 .993
125
Parent Negative Affect* -.101 .083 -0.54 .593 -.032 .068 -0.16 .876
Parent Somatic Symptoms* .105 .094 0.56 .576 .038 .078 0.17 .866
Parent Interpersonal Relations* -.172 .292 -1.09 .279 -.030 .244 -0.19 .849
Parent PSS* .033 .129 0.14 .893 .014 .091 0.05 .957
Parent Total IES* .251 .021 1.05 .300 -.182 .015 -0.67 .506
Parent Avoidance* .233 .054 0.94 .352 -.092 .043 -0.34 .732
Parent Intrusions* .188 .055 0.76 .449 -.160 .035 -0.62 .540
Parent Hyperarousal* .250 .068 1.32 .191 -.195 .048 -0.85 .400
Outcome: HCCS Negative Affect
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* -.142 .056 -0.73 .471 -.019 .052 -0.07 .943
Parent Positive Affect* .373 .267 0.92 .363 .087 .225 0.23 .820
Parent Negative Affect* -.080 .131 -0.43 .667 .091 .114 0.42 .675
Parent Somatic Symptoms* -.140 .152 -0.74 .462 .192 .133 0.81 .418
Parent Interpersonal Relations* -.003 .483 -0.02 .985 .117 .416 0.70 .486
Parent PSS* -.003 .483 -0.02 .985 .027 .143 0.11 .915
Parent Total IES* -.254 .033 -1.08 .286 -.099 .026 -0.36 .723
Parent Avoidance* -.212 .089 -0.85 .400 -.146 .073 -0.53 .600
Parent Intrusions* -.237 .088 -0.99 .328 -.078 .059 -0.30 .767
Parent Hyperarousal* -.102 -.173 0.11 -.930 -.013 .081 -0.06 .954
OUTCOME: HCCS Somatic Symptoms
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* .230 .044 1.15 .253 -.005 .038 -0.02 .985
Parent Positive Affect* .072 .201 0.17 .864 -.088 .165 -0.23 .818
Parent Negative Affect* .343 .100 1.85 .070 -.016 .085 -0.07 .942
Parent Somatic Symptoms* .218 .113 1.17 .247 .166 .096 0.70 .485
Parent Interpersonal Relations* .275 .363 1.73 .090 -.077 .307 -0.45 .651
Parent PSS* .268 .153 1.13 .264 .167 .110 0.64 .527
Parent Total IES* -.243 .024 -1.00 .319 -.226 .018 -0.80 .428
Parent Avoidance* -.240 .064 -0.95 .348 -.462 .051 -1.69 .097
Parent Intrusions* -.237 .065 -0.96 .343 -.079 .043 -0.29 .772
Parent Hyperarousal* -.131 .082 -0.68 .502 -.038 .059 -0.16 .877
Outcome: CESD - Interpersonal Problems
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* .034 .011 0.19 .850 -.122 .011 -0.48 .631
Parent Positive Affect* .128 .058 0.32 .748 -.457 .048 -1.26 .214
Parent Negative Affect* .046 .027 0.26 .793 -.019 .024 -0.09 .928
Parent Somatic Symptoms* .094 .033 0.51 .610 .009 .029 0.04 .969
Parent Interpersonal Relations* .173 .103 1.10 .275 .024 .091 0.14 .885
126
Parent PSS* .048 .043 0.21 .835 -.160 .032 -0.63 .530
Parent Total IES* -.284 .007 -1.22 .227 -.219 .006 -0.80 .424
Parent Avoidance* -.391 .019 -1.65 .105 -.320 .016 -1.22 .229
Parent Intrusions* -.142 .020 -0.58 .561 -.178 .013 -0.67 .503
Parent Hyperarousal* -.177 .024 -0.96 .342 -.052 .018 -0.22 .825
Outcome: HCCS Total Posttraumatic Growth
Discrepancy Main Effect Model -.181 1.604 -1.25 .216 .442 1.178 3.15 .003
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* -.009 .133 -0.04 .964 -.033 .114 -0.12 .906
Parent Positive Affect* -.397 .583 -0.93 .357 .128 .472 0.34 .734
Parent Negative Affect* -.197 .297 -1.02 .312 -.168 .248 -0.74 .460
Parent Somatic Symptoms* .016 .339 0.08 .933 .074 .283 0.31 .760
Parent Interpersonal Relations* .022 1.06 0.13 .895 .075 .875 0.44 .659
Parent PSS* -.041 .466 -0.17 .868 -.311 .325 -1.16 .251
Parent Total IES* -.328 .071 -1.38 .172 -.367 .054 -1.51 .136
Parent Avoidance* -.317 .186 -1.28 .207 -.266 .158 -0.95 .348
Parent Intrusions* -.312 .189 -1.29 .204 -.369 .139 -1.57 .123
Parent Hyperarousal* -.221 .240 -1.16 .251 -.314 .194 -1.44 .156
Outcome: HCCS Appreciation for Life
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* .122 .025 0.62 .535 -.167 .021 -0.61 .546
Parent Positive Affect* -.456 .109 -1.12 .268 .246 .088 0.67 .503
Parent Negative Affect* -.110 .057 -0.59 .554 -.183 .047 -0.84 .406
Parent Somatic Symptoms* .130 .065 0.71 .481 .109 .053 0.46 .646
Parent Interpersonal Relations* .067 .201 0.41 .680 -.111 .165 -0.67 .507
Parent PSS* .101 .090 0.42 .675 -.202 .062 -0.76 .448
Parent Total IES* .146 .014 0.63 .528 -.190 .010 -0.67 .503
Parent Avoidance* .108 .036 0.45 .657 -.028 .029 -0.10 .918
Parent Intrusions* .134 .036 0.57 .569 -.180 .024 -0.67 .502
Parent Hyperarousal* .207 .046 1.13 .261 -.252 .034 -1.02 .311
Outcome: HCCS New Possibilities
Discrepancy Main Effect Model -.144 .332 -1.00 .321 .419 .243 2.89 .005
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* .094 .027 0.47 .638 -.125 .023 -0.46 .648
Parent Positive Affect* -.287 .119 -0.69 .492 .452 .093 1.27 .209
Parent Negative Affect* -.007 .062 -0.04 .969 -.241 .049 -1.12 .267
Parent Somatic Symptoms* .133 .070 0.72 .473 .013 .057 0.06 .954
Parent Interpersonal Relations* -.026 .218 -0.16 .874 -.075 .176 -0.45 .652
Parent PSS* .067 .093 0.28 .779 -.376 .063 -1.48 .144
Parent Total IES* .004 .015 0.02 .987 -.507 .011 -1.85 .251
Parent Avoidance* .047 .039 0.19 .849 -.244 .031 -0.91 .368
127
Parent Intrusions*
-.011 .040 -0.05 .963 -.270 .029 -1.17 .249
Parent Hyperarousal* .031 .051 0.17 .869 -.456 .036 -1.91 .327
Outcome: HCCS Spiritual Growth
Discrepancy Main Effect Model -.174 .425 -1.19 .238 .418 .290 3.48 .001
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* -.030 .035 -0.15 .884 -.106 .029 -0.37 .710
Parent Positive Affect* -.191 .157 -0.44 .664 .573 .119 1.55 .126
Parent Negative Affect* -.139 .079 -0.73 .471 -.146 .063 -0.66 .515
Parent Somatic Symptoms* .046 .091 0.24 .809 .035 .073 0.14 .886
Parent Interpersonal Relations* -.160 .276 -0.96 .339 .112 .225 0.66 .512
Parent PSS* -.009 .124 -0.04 .972 -.184 .084 -0.69 .494
Parent Total IES* -.132 .019 -0.57 .573 -.184 .084 -0.69 .494
Parent Avoidance* -.133 .050 -0.54 .593 -.085 .040 -0.31 .759
Parent Intrusions* -.117 .049 -0.50 .616 -.303 .531 2.55 .185
Parent Hyperarousal* -.032 .065 -0.17 .867 -.458 .045 -1.88 .066
Outcome: HCCS Relating to Others
Discrepancy Main Effect Model: -.147 .292 -1.20 .235 .568 .236 4.27 <.001
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* .155 .028 0.77 .443 -.150 .023 -0.56 .575
Parent Positive Affect* -.500 .127 -1.18 .244 .380 .096 1.08 .286
Parent Negative Affect* .032 .067 0.17 .868 -.230 .051 -1.08 .283
Parent Somatic Symptoms* .119 .075 0.63 .532 -.056 .058 -0.24 .807
Parent Interpersonal Relations* -.045 .235 -0.26 .792 -.114 .181 -0.70 .485
Parent PSS* .243 .099 1.01 .318 -.284 .066 -1.11 .271
Parent Total IES*
-.058 .017 -0.23 .815 -.359 .011 -1.58 .119
Parent Avoidance* -.051 .043 -0.20 .845 -.283 .032 -1.06 .295
Parent Intrusions*
-.059 .044 -0.24 .814 -.373 .028 -1.70 .096
Parent Hyperarousal*
-.003 -.010 .06 -.975 -.285 .039 -1.39 .169
Outcome: HCCS Personal Strength
Discrepancy Main Effect Model: -.074 .298 -.50 .663 .454 .202 3.75 <.001
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* -.006 .025 -0.03 .975 .273 .020 1.00 .321
Parent Positive Affect* -.328 .110 -0.74 .461 -.284 .085 -0.78 .440
Parent Negative Affect* -.206 .055 -1.05 .296 .104 .045 0.47 .637
Parent Somatic Symptoms* .022 .062 0.11 .909 .367 .049 1.61 .112
Parent Interpersonal Relations* .029 .196 0.18 .861 .220 .154 1.37 .177
Parent PSS* -.009 .087 -0.03 .973 -.137 .059 -0.51 .609
Parent Total IES* -.426 .013 -1.79 .079 -.476 .010 -1.69 .097
Parent Avoidance* -.463 .034 -1.87 .067 -.210 .028 -0.76 .450
Parent Intrusions* -.379 .035 -1.55 .128 -.499 .023 -1.88 .066
Parent Hyperarousal* -.279 .044 -1.45 .153 -.471 .032 -1.93 .059
Outcome: HCCS Total Pediatric Quality of Life
128
Discrepancy Main Effect Model -.059 3.11 -0.74 .673 .481 2.137 3.75 .001
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD*
.263 .170 1.34 .186 .613 .137 2.54 .014
Parent Positive Affect* -.764 .789 -1.96 .055 -.351 .653 -0.99 .326
Parent Negative Affect* .077 .413 0.41 .684 .292 .336 1.43 .157
Parent Somatic Symptoms* .319 .444 1.79 .078 .394 .366 1.88 .065
Parent Interpersonal Relations* -.022 1.47 -0.14 .888 .105 1.23 0.66 .510
Parent PSS* .190 .605 0.84 .406 .264 .425 1.12 .269
Parent Total IES* -.045 .099 -0.19 .851 .175 .071 0.67 .506
Parent Avoidance* -.022 .259 -0.09 .928 .125 .201 0.49 .624
Parent Intrusions* -.067 .263 -0.27 .784 .183 .166 0.73 .466
Parent Hyperarousal* -.044 .330 -0.23 .817 .106 .229 0.47 .640
Outcome: HCCS Physical Health Summary
Discrepancy Main Effect Model -.099 2.67 -0.83 .411 .404 .267 3.50 .001
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD*
.282 .260 1.40 .168 .564 .208 2.68 .009
Parent Positive Affect* -.704 1.10 -1.83 .072 -.543 .864 -1.63 .109
Parent Negative Affect*
.075 .574 0.40 .689 .473 .448 1.93 .048
Parent Somatic Symptoms*
.259 .633 1.44 .154 .480 .507 2.66 .016
Parent Interpersonal Relations* .111 1.10 0.72 .472 .239 1.59 1.63 .108
Parent PSS* .177 .845 0.79 .433 .337 .574 1.49 .142
Parent Total IES* -.095 .144 -0.41 .686 .305 .100 1.22 .228
Parent Avoidance* -.088 .377 -0.36 .721 .288 .282 1.18 .242
Parent Intrusions* -.111 .383 -0.46 .647 .242 .234 1.01 .318
Parent Hyperarousal* -.063 .481 -0.34 .738 .227 .324 1.05 .298
Outcome: HCCS Emotional Functioning
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* .160 .225 0.88 .380 .025 .201 0.10 .920
Parent Positive Affect* -.627 1.15 -1.61 .113 .054 .988 0.15 .884
Parent Negative Affect* .144 .578 0.79 .432 -.087 .503 -0.41 .682
Parent Somatic Symptoms* .247 .638 1.40 .166 -.205 .560 -0.93 .358
Parent Interpersonal Relations* -.096 2.11 -0.61 .544 -.115 1.83 -0.71 .483
Parent PSS* .088 .839 0.39 .695 -.149 .615 -0.61 .543
Parent Total IES* .062 .136 0.27 .787 -.076 .103 -0.29 .772
Parent Avoidance* .035 .360 0.15 .883 -.067 .296 -0.26 .797
Parent Intrusions* .050 .361 0.21 .830 -.040 .239 -0.16 .873
Parent Hyperarousal* .029 .450 0.16 .872 -.108 .326 -0.48 .629
Outcome: HCCS Social Functioning
Discrepancy Main Effect Model -.235 1.794 -1.86 .069 .350 1.44 2.85 .006
Interaction Models*(Hispanic & Anglo
Discrepancy)
129
Parent CESD*
.292 .153 1.47 .148 .637 .123 2.60 .012
Parent Positive Affect* -.816 .700 -2.12 .038 -.164 .583 -0.46 .643
Parent Negative Affect*
.154 .374 0.81 .422 .346 .342 2.05 .044
Parent Somatic Symptoms*
.357 .408 1.97 .054 .479 .333 2.26 .027
Parent Interpersonal Relations* -.015 1.32 -0.09 .926 .094 1.10 0.59 .555
Parent PSS* .267 .560 1.13 .265 .376 .390 1.54 .130
Parent Total IES* -.005 .090 -0.02 .983 .207 .065 0.77 .442
Parent Avoidance* .103 .234 0.41 .683 .188 .182 0.73 .468
Parent Intrusions* -.108 .238 -0.44 .664 .214 .153 0.83 .409
Parent Hyperarousal* .000 .299 0.00 .998 .104 .210 0.45 .655
Outcome: HCCS School Functioning
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy))
Parent CESD* .028 .228 0.13 .897 .434 .194 1.54 .130
Parent Positive Affect* -.199 1.01 -0.48 .633 -.305 .845 -0.81 .423
Parent Negative Affect* -.154 .515 -0.78 .437 .300 .440 1.36 .180
Parent Somatic Symptoms* .155 .580 0.80 .425 .355 .491 1.52 .133
Parent Interpersonal Relations* -.179 1.83 -1.08 .285 .018 1.60 0.11 .914
Parent PSS* .092 .790 0.37 .709 .297 .568 1.13 .262
Parent Total IES* -.057 .123 -0.23 .818 -.015 .097 -0.05 .960
Parent Avoidance* -.031 .320 -0.12 .903 -.146 .270 -0.51 .609
Parent Intrusions* -.019 .327 -0.08 .938 .080 .226 0.29 .776
Parent Hyperarousal* -.088 .408 -0.45 .652 .000 .306 0.00 .999
Outcome: HCCS Psychosocial Health
Summary
Discrepancy Main Effect Model: NONE - - - - - - - -
Interaction Models*(Hispanic & Anglo
Discrepancy)
Parent CESD* .204 .149 1.05 .300 .419 .126 1.65 .104
Parent Positive Affect* -.697 .740 -1.76 .083 -.146 .632 -0.39 .695
Parent Negative Affect* .066 .385 0.34 .732 .182 .326 0.86 .395
Parent Somatic Symptoms* .315 .413 1.76 .083 .202 .359 0.91 .365
Parent Interpersonal Relations* -.130 1.38 -0.81 .423 -.020 1.19 -0.12 .906
Parent PSS* .174 .572 0.74 .460 .169 .414 0.67 .503
Parent Total IES* .007 .089 0.03 .978 .034 .067 0.12 .902
Parent Avoidance* .041 .231 0.17 .869 -.030 .188 -0.11 .911
Parent Intrusions* -.020 .236 -0.08 .934 .101 .155 0.39 .701
Parent Hyperarousal* -.263 .282 -1.46 .148 -.084 .263 -0.41 .683
Note. Results in bold type highlight statistically significant differences. Main effect models: each line
represents two separate models (Hispanic vs. Anglo discrepancy) after controlling for HCCS age, HCCS
sex, parent age, SES, treatment intensity, time since diagnosis, insurance status and living at home.
Interaction models: each line represents two separate models (parent predictor by Hispanic vs. Anglo
discrepancy interaction and main effect predictors) after controlling for HCCS age, HCCS sex, treatment
intensity and insurance status.
130
2
2.5
3
3.5
4
4.5
5
Hispanic Orientation
Parent Child
Anglo Orientation
Figure 5-1.
Itemized comparisons of parent versus child responses on Hispanic and Anglo-
American acculturation measures
131
Figure 5-2.
Graph of the relationship between parent total depressive symptoms, and predicted
HCCS total pediatric quality of life at different levels of Anglo-American orientation
0
20
40
60
80
100
120
0 5 10 15 20 25
Predicted HCCS Total Pediatric Quality of Life
Parent Total Depressive Symptoms
Higher Anglo Discrepancy
Mean Anglo Discrepancy
Lower Anglo Discrepancy
Slope: p =.003
NS
132
Figure 5-3.
Graph of the relationship between parent total depressive symptoms and predicted
HCCS social functioning at different levels of Anglo-American orientation
0
20
40
60
80
100
120
0 5 10 15 20 25
Predicted HCCS Social Functioning
Parent Total Depressive Symptoms
Slope: p =.002
NS
Higher Anglo Discrepancy
Mean Anglo Discrepancy
Lower Anglo Discrepancy
133
Figure 5-4.
Graph of the relationship between parent negative affect and predicted HCCS social
functioning at different levels of Anglo-American orientation
0
20
40
60
80
100
120
0 5 10 15 20 25
Predicted HCCS Social Functioning
Parent Negative Affect
Slope: p =.015
NS
Higher Anglo Discrepancy
Mean Anglo Discrepancy
Lower Anglo Discrepancy
134
Figure 5-5.
Graph of the relationship between parent somatic symptoms and predicted HCCS social
functioning at different levels of Anglo-American orientation
0
20
40
60
80
100
120
0 5 10 15 20 25
Predicted HCCS Social Functioning
Parent Somatic Symptoms
Slope: p =.002
NS
Higher Anglo Discrepancy
Mean Anglo Discrepancy
Lower Anglo Discrepancy
135
Figure 5-6.
Graph of the relationship between parent total depressive symptoms and predicted
HCCS physical health functioning at different levels of Anglo-American orientation
0
20
40
60
80
100
120
0 5 10 15 20 25
Predicted HCCS Physcial Health
Parent Total CESD
Slope: p =.008
Slope: p = .0003
Higher Anglo Discrepancy
Mean Anglo Discrepancy
Lower Anglo Discrepancy
136
Figure 5-7.
Graph of the relationship between parent negative affect and predicted HCCS physical
functioning at different levels of Anglo-American orientation
0
20
40
60
80
100
120
0 5 10 15 20 25
Predicted HCCS Physical Health
Parent Negative Affect
Slope: p =.037
Slope: p = .003
Higher Anglo Discrepancy
Mean Anglo Discrepancy
Lower Anglo Discrepancy
137
Figure 5-8.
Graph of the relationship between parent somatic symptoms and predicted HCCS
physical health at different levels of Anglo-American orientation
0
20
40
60
80
100
120
0 5 10 15 20 25
Predicted HCCS Physical Health
Parent Somatic Symptoms
Relationship between Parent Somatic Symptoms and HCCS Physical
Health at different levels of Anglo American Acculturation
Slope: p =.017
Slope: p < .0001
Higher Anglo Discrepancy
Mean Anglo Discrepancy
Lower Anglo Discrepancy
138
CHAPTER 6: GENERAL DISCUSSION
Summary of Findings
There is a significant likelihood that a CCS will experience some type of physiological or
mental health late effect after they complete their cancer treatment, therefore it is highly
recommended for CCS to undertake a life-time annual follow-up care routine in order to
diagnose and treat secondary medical conditions in a timely fashion (COG, 2013). Given the
importance of the family during and after the childhood cancer experience, the overall objective
of this dissertation project was to gain further understanding in the role of parent influences on
the follow-up care practices and mental health of childhood cancer survivors, while addressing
gaps in ethnic and cultural disparities in the current cancer survivorship literature.
Guided by the Integrative Model of Behavioral Prediction and Social Learning Theory,
Study 1 investigated the relationships between external parent influence (parent modeling), CCS
control beliefs (healthcare self-efficacy), previous behavior (prior follow-up care visits) and the
intention to seek follow-up care (Bandura, 2016; Martin Fishbein, 2008). Moreover, Study 1
addressed the critical time period when the CCS transitions from child-centered to adult-centered
care. It was predicted that 1) INTENT would be positively associated with PHSE after
controlling for covariates, and this relationship would be strongest among younger (under 21
years) vs. older (21 years and older) CCS; 2) CHSE would be positively associated with PHSE
after controlling for covariates, and this relationship would be strongest among younger vs. older
CCS; 3) PREV within the last two years would be positively associated with PHSE after
controlling for covariates, and this relationship would be strongest among younger vs. older
CCS; 4) CHSE would be positively associated with INTENT after controlling for covariates,
and this relationship would be strongest among older vs. younger CCS; 5) PREV would be
139
positively associated with INTENT after controlling for covariates, and this relationship will be
strongest among older vs. younger CCS; and 6) the relationship between PHSE and INTENT
would be fully mediated by CHSE and PREV after controlling for covariates, and these
relationships would be strongest among younger vs. older CCS.
After testing the first hypothesis, as the first step in mediation analysis, PHSE was not a
significant predictor of INTENT after controlling for covariates. The second part of the
hypothesis was tested and found a significant interaction between CCS age (under/over age 21)
and PHSE on INTENT, which post hoc evaluation revealed to be significant for the younger
CCS and not significant for the older CCS. Due to these findings, further mediation testing was
conducted on the under 21 sample. The overall finding revealed that neither CHSE nor PREV
fully mediated the relationship between PHSE. Rather, among the under 21 year old group,
PHSE was directly associated with INTENT, whereas, among the over 21 year old group, the
own CHSE was more important to INTENT. INTENT in both groups benefited from previous
follow-up care visits, however, the association was more than twice as large for the older group
then the younger group.
The findings from Study 1 suggest that parent traits have their greatest associations with
INTENT when the CCS is under 21 years old, or before they transition to adult-centered care.
After the transition into adult-centered care, their personal healthcare self-efficacy becomes more
central to the adherence of long-term follow-up care regimens. These findings support prior
cancer survivorship research identifying self-management and self-efficacy as vital factors in the
transition from child-centered care to adult-centered care (Sadak, 2017).
Utilizing the frameworks of Family Systems Theory and Theory of Bicultural
Functioning (Bowen, 1974; Dunst, Trivette, Hamby, & Pollock, 1990) Study 2 sought to
140
examine the emotional connectedness intertwined within the family unit by investigating the
associations between parent mental health and child mental health among the families of CCS. In
addition, Study 2examined the specific role of Hispanic ethnicity on these relationships. It was
hypothesized that 1) Parent perceived stress, parent posttraumatic stress and parent depressive
symptoms would be positively associated with CCS perceived stress and depressive symptoms;
2) Parent stress, parent posttraumatic stress and parent depressive symptoms would be negatively
associated with CCS posttraumatic growth and CCS quality of life; and 3) Hispanic ethnicity
would modify all of these parent-child associations, where stronger relationships were found
among HCCS and their parents.
The results revealed significant main effect relationships between parent and CCS mental
health outcomes. CCS depressive symptoms were positively related to parent PSS, CESD and
PTSD. This partially supported the first hypotheses that higher negative mental health in parents
is related to higher depressive symptoms in CCS. Among the positive mental health outcomes in
CCS, as predicted, lower levels of parent PSS were significantly associated with higher levels of
PTG. Parent CESD, and PTSD were also negatively correlated with pediatric quality of life,
including psychosocial functioning and physical health. Moderation analysis revealed two
significant interactions between Hispanic ethnicity and parent PSS; positively associated with
CCS depressive symptoms, and negatively associated with PedsQL subscale, emotional
functioning. Post hoc sensitivity analyses revealed that both interactions were significant for
Hispanic CCS, but these same relationships were not significant for non-Hispanic CCS.
The main effect findings of Study 2 support the current literature on the association of
parent mental health on child mental health, i.e., higher negative mental health problems in the
parents are associated with higher negative mental health issues, and lower positive mental
141
health issues in the CCS. The moderated effect of Hispanic ethnicity on parent PSS and the CCS
outcomes identify an associated with total depressive symptoms, negative affect, somatic
symptoms, quality of life, physical functioning, and emotional functioning that is unique to
Hispanic CCS (vs. non-Hispanic CCS), which may be indicative of special cultural issues that
affect the day to day stress of the family, and not the PTSD associated specifically with the
cancer experience (Cohen, et al., 1983). Furthermore, this group is also less likely to seek
professional services to address mental health concerns (Villatoro, et al., 2014). Despite the non-
significant moderation of Hispanic ethnicity and PTSD, research shows that Hispanics are still
more prone to develop PTSD than other ethnic groups, which suggests that perhaps acculturation
issues within the Hispanic family unit may be responsible for the disparity in PTSD that was not
captured in Study 2 (Fierros & Smith, 2006; Meeske, et al., 2013).
Study 3 further expanded the line of research from Study 2 to incorporate the role of
acculturation discrepancy in parent-child mental health associations. Through application of the
Acculturation Gap Theory (Birman, 2006) we further investigated the role of acculturation
discrepancy on parent-child mental health relationships within Hispanic-only families of CCS.
We predicted that 1) Hispanic acculturation discrepancy would be positively correlated with
HCCS depressive symptoms and HCCS perceived stress, and negatively correlated with HCCS
posttraumatic growth and HCCS quality of life; 2) Anglo-American acculturation discrepancy
scores would be positively correlated with HCCS depressive symptoms and HCCS perceived
stress, and negative correlated with HCCS posttraumatic growth and HCCS quality of life; and
3) Parent-child acculturation discrepancy scores would significantly moderate the mental health
associations between the parent and child dyads.
142
Contrary to the study’s main effect hypotheses the majority of the significant findings in
this study were in the opposite predicted direction. Positive HCCS mental health outcomes,
(PTG and PedsQL ) were significantly positively correlated to Anglo-American discrepancy
suggesting that the more Anglo-American oriented the child is than their parent (i.e., a larger
acculturation gap), the greater PTG and quality of life experiences are reported by the HCCS.
Psychological adaptation might be the mechanism responsible for promoting psychological
health and well-being in Anglo-American acculturated HCCS (J. W. Berry, 1997). An alternative
explanation of this finding may focus on the health literacy rates of Anglo-American
acculturated HCCS, which are potentially higher than their parent, as a result of the survivor
taking on a role of interpreter during their treatment (Adams, 2010; Morales & Hanson, 2005).
Lastly, ‘Americanized’ CCS could be drawing on the emotional and social support of their peers,
which is also positively correlated with PTG, particularly among nonwhite CCS (Yi, et al.,
2015).
Dissertation Strengths and Limitations
There are certain limitations to take into account when considering the results of these
studies. First, caution should be taken when generalizing the findings to other CCS populations.
The data collected for this study was from a large urban region in the western United States, with
a prominent Hispanic population and may not be comparable to dissimilar regions. The parent
sample was largely female, thus the parent-level variables in this study did not reflect the shared
influence of multiple caregivers (e.g., fathers, grandparents, aunts, uncles, religious leaders)
(Hobbs, et al., 2015). Furthermore, a self-selection bias may have occurred as parents of younger
CCS were more likely to participate in these studies than parents of older CCS. This may reflect
143
findings of families that are closer together (both in proximity and socially) and not of families
where the young adult CCS is over 21 and not dependent on the parent.
Another limitation is the original study design. These dissertation studies examined cross-
sectional data, which can only capture data from a specific moment in time. Such data cannot be
used to infer causal relationships, thus it we are unable to establish directionality in the parent
and child associations. The data itself is self-reported by the HCCS and the parent, which may
not be as accurate as multiple or more objective methods of collection. While all of the scales
used in these studies are taken from previously validated measures, our sample had two measures
that were low to unreliable. Although for CHSE the Cronbach alpha in our sample ( = .64) is
comparable to reliability of CHSE in previously published studies (Miller, et al., 2017), it is still
considered a questionable measure (Peterson, 1994). CCS PSS in our sample had a poor
reliability rating, thus results should be used to guide additional research and not to generalize
findings.
Several strengths can also be found in these dissertation studies. First, the large number
of complete Hispanic CCS and parent dyads is a prominent feature of this study. Studies that
include Hispanic parent and CCS dyads tend to be qualitative in nature with small sample sizes
(under 50 dyads) (Casillas et al., 2010; Kinahan et al., 2008). Next, much of previous research on
acculturation discrepancy relies on the youth’s perception of the parent’s responses, whereas this
study contains authentic parent responses. Furthermore, these studies add to the current body of
CCS research, particular among Hispanic CCS where a large gap in the literature exists. Results
from these studies inform clinicians of cultural gaps in the literature relating specifically to
Hispanic childhood cancer survivorship.
144
Final conclusion
The results of these three dissertation studies identify some of the parental factors
associated with follow-up care and mental health concerns among general CCS population.
Furthermore, the findings on how ethnicity and culture may impact mental health outcomes in
Hispanic CCS inform the current literature by empirically filling the gaps in Hispanic childhood
cancer survivorship research concerning acculturation discrepancy and parent-child mental
health relationships.
The results of this study suggest that individually tailored support programs are needed in
addition to family-centered approaches to cancer survivorship healthcare. In families with
younger CCS, interventions targeting PHSE may be useful to CCS future intent to seek follow-
up care. In families with young adult CCS, interventions that focus on improving CHSE during
the transition to adult-centered care are essential to future cancer-related follow-up care.
Moreover, clinicians should pay particular attention to the acculturation in both the parent and
HCCS in order to account for cultural differences within ethnic (Hispanic) families when
providing these tailored support services. Finally, the findings regarding PTSD among Hispanic
parents suggest a type of late-effect experienced by the parent which may indicate an unmet
clinical need in long term survivorship care. More research is needed to 1) study longitudinal
causal effects of parenting indicators and CCS health and well-being; 2) expand research to
address the long-term impact of the cancer experience on the entire family unit; and 3) evaluate
additional mechanisms that contribute to protective and/or detrimental mental health outcomes in
HCCS of bicultural families, particularly in the area of Hispanic subgroup acculturation and the
implications of language barriers.
145
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APPENDIX
Validated Construct Measures for Study 1
Construct Name
Total
Items
Survey Items Response Options
CCS Previous
Follow-up Care
1 When did you last see a doctor for
cancer related follow-up care?
1. Within the past year
2. 1-2 years ago
3. More than 2 years ago
4. Not sure
Intent to obtain
Follow-up Care
1 During the next 2 years, what are
the chances that you will go for a
cancer follow-up visit?
1. Very likely
2. Likely
3. Not likely
4. Not sure
Parent Healthcare
Self-efficacy
3 ·How confident are you that you
can ask your child’s doctor
questions about things that
concern you?
·How confident are you in your
ability to make your child’s
doctor’s appointments or decide
when he/she needed care?
·How confident are you that in the
next 2 years your child can get the
cancer follow-up care he/she
needs?
1. Not Very
2. A little bit
3. Moderately
4. Quite a bit
5. Extremely
Child Healthcare
Self-efficacy
3 ·How confident are you that you
can ask your doctor questions
about things that concern you?
·How confident are you in your
ability to make your own doctor’s
appointments or decide when you
care?
·How confident are you that in the
next 2 years you can get the cancer
follow-up care you need?
1. Not Sure
2. Not Confident
3. Somewhat Confident
4. Very Confident
165
Validated Construct Measures Studies 2 & 3
Construct Name
Total
# of
Items
Survey Items Response Options
CCS Posttraumatic
Growth
(PTGI-SF)
A. Relating to Others
B. New Possibilities
C. Personal Strength
D. Spiritual Change
E. Appreciation for Life
10 Indicate the degree to which you
have experienced changes as a
result of your cancer experience:
1. I changed my priorities about
what is important in life. (B)
2. I have a greater appreciation for
the value of my own life. (E)
3. I am able to do better things
with my life. (E)
4. I have a better understanding of
spiritual matters. (D)
5. I have a greater sense of
closeness with others. (A)
6. I established a new path for my
life. (B)
7. I know better that I can handle
difficulties. (C)
8. I have a stronger religious faith.
(D)
9. I discovered that I’m stronger
than I thought I was. (C)
10. I learned a great deal about how
wonderful people are. (A)
0 = did not experience any
change
1 = Very small degree
2 = Small degree
3 = Moderate degree
4 = Great degree
5 = Very great degree
CCS Quality of Life
(PedsQL)
28 In the past month, how much of a
problem has this been for you…
Physical Functioning
1. It is hard for me to walk more
than 1 block
2. It is hard for me to run
3. It is hard for me to do sports
activity or exercise
4. It is hard for me to lift
something heavy
5. It is hard for me to take a bath
or shower by myself
6. It is hard for me to do chores
around the house
7. I hurt or ache
8. I have low energy
Emotional Functioning
0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
166
1. I feel afraid or scared
2. I feel sad or blue
3. I feel angry
4. I have trouble sleeping
5. I worry about what will happen
to me
Social Functioning
1. I have trouble getting along with
other teens
2. Other teens do not want to be
my friend
3. Other teens tease me
4. I cannot do things that other
teens my age can do
5. It is hard to keep up with my
peers
School Functioning
1. It is hard to pay attention in
class
2. I forget things
3. I have trouble keeping up with
my schoolwork
4. I miss school because of not
feeling well
5. I miss school to go to the doctor
or hospital
CCS & Parent Center
for Epidemiological
Studies – Depression
Scale
(CES-D)
A. Negative Affect
B. Positive Affect
C. Interpersonal
Problems
D. Somatic Problems
20 In the past week: How often did
you feel this way?
1. I was bothered by things that
usually don’t bother me. (D)
2. I did not feel like eating; my
appetite was poor. (D)
3. I felt that I could not shake off
the blues even with help from
my family. (A)
4. I felt that I was just as good as
other people.** (B)
5. I had trouble keeping my mind
on what I was doing. (D)
6. I felt depressed. (A)
7. I felt that everything I did was
an effort. (D)
8. I felt hopeful about the future.**
(B)
9. I thought my life had been a
0 = Rarely or none of the
time (0-1 days)
1 = Some or a little of the
time (1-2 days)
2 = Occasionally or a
moderate amount of the
time (3-4 days)
3 = Most or all of the time
(5-7 days)
167
failure. (A)
10. I felt fearful. (A)
11. My sleep was restless. (D)
12. I was happy.** (B)
13. I talked less than usual. (D)
14. I felt lonely. (A)
15. People were unfriendly. (C)
16. I enjoyed life.** (B)
17. I had crying spells. (A)
18. I felt sad. (A)
19. I felt that people disliked me.
(C)
20. I could not get “going.” (D)
** Responses for these items are
reversed.
CCS & Parent
Perceived Stress Scale
(PSS-4)
4 In the last month, how often have
you…
1. Felt that you were unable to
control the important things in
your life?
2. Felt confident about your ability
to handle your personal
problems?**
3. Felt that things were going your
way?**
4. Felt difficulties were piling up
so high that you could not
overcome them?
**Responses for these items are
reversed.
0 = Never (0 days)
1 = Almost Never (1-2
days)
2 = Sometimes (3-5 days)
3 = Fairly Often (5-15
days)
4 = Very Often (15+ days)
Parent Posttraumatic
Stress Disorder
(IES-R)
A. Avoidance
B. Intrusion
C. Hyperarousal
21 The following is a list of
difficulties people sometimes have
after stressful life events. Please
indicate how distressing each
difficulty has been for you during
the past 7 days with respect to
your child’s cancer. How much
were you distressed or bothered by
these difficulties?
1. Any reminder brought back
feelings about it. (B)
2. I had trouble staying asleep. (B)
3. Other things kept making me
think about it. (B)
0 = Not at all
1 = A little bit
2 = Moderately
3 = Quite a bit
4 = Extremely
168
4. I felt irritable and angry. (C)
5. I avoided letting myself get
upset when I thought about it or
was reminded of it. (A)
6. I thought about it when I didn’t
mean to. (B)
7. I felt as if it hadn’t happened or
wasn’t real. (A)
8. I stayed away from reminders
about it. (A)
9. Pictures about it popped into my
mind. (B)
10. I was jumpy and easily
startled. (C)
11. I tried not to think about it. (A)
12. I was aware that I still had a lot
of feelings about it, but I didn’t
deal with them. (A)
13. My feelings about it were kind
of numb. (A)
14. I found myself acting or
feeling like I was back at that
time. (B)
15. I had trouble falling asleep. (C)
16. I had waves of strong feelings
about it. (B)
17. I tried to remove it from my
memory. (A)
18. I had trouble concentrating.(C)
19. Reminders of it caused me to
have physical reactions, such
as sweating, trouble breathing,
nausea, or a pounding heart.(C)
22. I tried not to talk about it. (A)
20. I had dreams about it. (B)
21. I felt watchful and on guard.
(C)
169
Additional Validated Construct Measure for Study 3
Construct Name
Total
# of
Items
Survey Items Response Options
The Acculturation
Rating Scale for
Mexican Americans-II
(ARSMA-2)
A. Hispanic Orientation
B. Anglo-American
Orientation
13 1. I speak Spanish. (A)
2. I speak English. (B)
3. I enjoy speaking Spanish. (A)
4. I associate with Anglo-
Americans or Whites. (B)
5. I enjoy English language
movies. (B)
6. I enjoy listening to English
language music. (B)
7. I enjoy Spanish language TV.
(A)
8. I enjoy Spanish language
movies. (A)
9. I enjoy reading books in
Spanish. (A)
10. I write letters in English. (B)
11. My thinking is done in the
English language. (B)
12. My thinking is done in the
Spanish language. (A)
13. My friends are of Anglo-
American or White origin. (B)
0 = Not at all
1 = Very little/ not very
much
2 = Moderately
3 = Very much/Very
often
4 = Almost
always/Extremely often
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Slaughter, Rhona Indira
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Childhood cancer survivorship: parental factors associated with survivor's follow-up care behavior and mental health
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Publication Date
04/26/2018
Defense Date
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