Anna Barnwell Psychology Honors Thesis Spring 2010[1]

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Maternal Supportiveness 1
Running Head: CANCER-RELATED MATERNAL SUPPORTIVENESS
The Association of Maternal Anxiety, Perceptions of Child Prognosis, and Coping with
Maternal Supportiveness for Children with Cancer
Anna S. Barnwell
Thesis completed in partial fulfillment of the requirements of the
Honors Program in Psychological Sciences
Under the Direction of Dr. Bruce Compas
Vanderbilt University
April, 2010
Approved
Date
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Maternal Supportiveness 2
Acknowledgements
I extend my deepest gratitude to all those who have helped me along the way throughout
my experience of writing this thesis. In particular, I would like to thank all members of the
Coping and Communication Team at Vanderbilt for their assistance, advice, and relentless effort.
It has been a privilege and pleasure to be part of such a motivated, intelligent group of
individuals, who have all helped inspire me to continue pursuing research. In particular, I am
especially grateful to Dr. Bruce Compas for supporting and advising my academic efforts
throughout the last few years. His guidance, wisdom, and dedication has help been a tremendous
help and intellectual inspiration. Finally, I would like to thank my family and friends for their
perpetual encouragement and support.
Maternal Supportiveness 3
Abstract
Over 12,400 children in the United States are diagnosed with cancer annually. The
diagnosis and treatment of cancer can create significant amounts of stress for the mothers of
these children. While facing this stress, mothers are traditionally expected to serve as primary
sources of emotional support to assist their children in dealing with the illness. A variety of
factors may hinder the ability to provide emotional support, including psychological distress
(anxiety), perceptions of cancer prognosis, and the specific coping mechanisms employed to deal
with the stress of having a child with cancer. This paper explores how maternal anxiety,
perception of prognosis, and coping may independently or jointly affect maternal emotional
supportiveness for children with cancer.
Maternal Supportiveness 4
Introduction
Childhood Cancer
Cancer is a life-threatening illness that is the leading cause of death due to disease in
children in the United States between infancy and age 15 years old. Approximately 13,000
children under the age of 20 in the United States receive a cancer diagnosis each year, making
the threat of childhood cancer very real for a substantial number of American families (United
States Cancer Statistics [USCS], 2005). There are 12 major types of pediatric cancers. Among
them, leukemia – blood cell cancer – is the most common, accounting for more than one third of
all diagnoses (National Cancer Institute [NCI], 2008). Moreover, there are currently three
primary options to treat pediatric cancer, which can be used individually or in combination
depending on the type and stage of the disease: surgery, chemotherapy, or radiation. Due to
recent advancements in the technology of these treatments, 5-year survival rates for childhood
cancer are now on the rise and have increased from 58.1 percent in 1975–77 to 79.6 percent in
1996–2003 (NCI, 2008). However, cancer incidence among children has also been increasing
over the past 20 years, rising from 11.5 cases per 100,000 children in 1975 to 14.8 in 2004 (NCI,
2008). In consequence, despite notable improvements in treatment, over 2,300 children continue
to die from cancer annually, making it the second leading cause of death for children, falling
only behind accidental deaths (American Cancer Society, 2007). Thus, the death of a child due to
cancer is a realistic, disconcerting threat for parents. Therefore, hearing the news of a child’s
cancer diagnosis can be one of the most devastating experiences a parent could face.
It is widely accepted that the life-threatening and complicated nature of cancer can
provoke a considerable amount of stress for both the diagnosed child and his or her family.
Maternal Supportiveness 5
Specifically, stress is defined as “environmental events or chronic conditions that objectively
threaten the physical and/or psychological health or well-being of individuals of a particular age
in a particular society” (Grant et al. 2005). A cancer diagnosis inarguably fits this description,
qualifying as a significant threat. Given the potential impairments – physical and psychological
– can cause, it is important to understand how parents and children respond to the stress of
cancer, as well as how parents may be able to help their children navigate through this difficult
experience. The current study examines the supportive behavior provided by mothers to their
children with cancer and factors potentially related to this support. These factors include
maternal anxiety, mechanisms of coping with their child’s cancer, and mothers’ perceptions of
their children’s prognoses.
Maternal Supportiveness
Children often turn to their mothers as their primary source of emotional support to deal
with the stress of having cancer. However, mothers may find it challenging to provide sufficient
supportive behavior for their children, as they, too, may be adversely affected by their child’s
cancer. The environmental, emotional, and psychological stress of a child’s cancer diagnosis and
its treatment can be an extremely traumatic experience for a mother and the source of significant
anxiety, sadness, and physiological arousal (Noll et al., 1995). Specifically, sources of distress
include the acute negative side effects of treatment, disruptions in family routines, steep financial
costs, potential long-term physical late effects, and the lingering possibility of a future relapse.
As children may be less informed than adults on how to handle these stressors, maternal
supportive behavior may be very important for children’s overall well-being during this painful
experience with cancer.
Maternal Supportiveness 6
A variety of resources are available to guide mothers on how to best support their
children through dealing with cancer. However, the majority of these resources lack supporting
empirical evidence; little research has been conducted on how parents in general should best
provide emotional and psychological support for their children in relation to the illness. One of
the major processes through which parental supportiveness has been researched is
communication style. The National Cancer Institute recommends that parents communicate
open and honestly with their children about their disease, even when the child is terminally ill
(NCI, 2002). This suggestion is based on the relatively small existing literature which indicates
that children typically desire to be fully informed about their cancer, including information
regarding their chances of survival (Slavin et al., 1982). Ellis and Leventhal (1993) surveyed 50
children with cancer and 95% of them indicated they wanted to be told about their prognosis –
even if they were dying. In turn, maternal “lack of candor” can create stress for both mothers
and their children; the absence of emotional support in terms of withholding prognosis
information may cause children to feel isolated and abandoned, especially if they can already
sense they are dying (Hilden et al., 2000). Additional empirical studies are needed to assess how
specific styles of maternal supportive behavior relate to children’s overall adjustment with
cancer.
Anxiety in Parents of Children with Cancer
Mothers are at an increased risk for developing stress-related symptoms at and shortly
following the time of their child’s diagnosis, and these symptoms are commonly manifested in
the form of anxiety. A recent meta-analysis on parental anxiety in relation to childhood cancer
demonstrates that both mothers and fathers are at an increased risk for psychological distress,
Maternal Supportiveness 7
including clinically significant anxiety, following their child’s diagnosis (Pai et al., 2007).
Furthermore, maternal anxiety can be detrimental enough to negatively impact a wide variety of
parenting behaviors in numerous contexts (Wood et al., 2003). Elevated levels of anxiety may,
in turn, adversely affect a mother’s ability to provide supportive behavior for her child.
According to Moore et al. (2004), anxious mothers are less warm, more likely to catastrophize,
and are more controlling through granting less autonomy as compared to non-anxious parents.
Anxious maternal behaviors may additionally provide a model of fear and uncertainty for
children, which could further impair the ease at which they are able cope with cancer.
Limited research currently exists relating generalized symptoms of anxiety in mothers of
children with cancer and maternal supportive behavior. Furthermore, there are notable
contradictions within the literature regarding mothers’ anxiety in relation to their children’s
cancer. A number of prospective studies illustrate that levels of maternal distress – including
anxiety – may be elevated close to diagnosis for both mothers and fathers. According to these
studies, anxiety symptoms tend to decline to normal levels within the first year post-diagnosis
(e.g., Hoekstra-Weebers et al., 1998; Sawyer et al., 2000). In contrast, other studies have
demonstrated that mothers continue to report symptoms of anxiety after their child’s completion
of cancer treatment at non-clinically significant levels (Greening & Stoppelbein, 2007; Kazak et
al., 1997). For example, one study by Roddenberry and Renk (2008) found that both mothers of
children who had been diagnosed with cancer reported experiencing minimal to mild symptoms
of generalized anxiety. However, the timing of assessments ranged widely, from 2-months to
112-months post-diagnosis, potentially confounding the results.
Much of the research on parental anxiety in relation to a childhood cancer has focused on
Maternal Supportiveness 8
posttraumatic stress disorder symptoms (PTSS) or posttraumatic stress disorder (PTSD).
According to the Diagnostic and Statistical Manuel of Mental Disorders (DSM-IV),
posttraumatic stress disorder symptoms include intrusive thoughts and worries about the child
and his or her health, physiological hyperarousal, and avoidance of conversations and/or stimuli
reminiscent of cancer (Bruce, 2006; Kazak et al., 2004). Research indicates that both mothers
and fathers of children with cancer are at an elevated risk for PTSS and PTSD in association with
their child’s cancer diagnosis and/or treatment (Bruce, 2006).
Parental Perceptions of Prognosis
To date, relatively little research has examined the relationship between mothers’
perceptions of cancer prognosis and the ability to provide emotional support for children with
cancer. Lay understanding of cancer is often poor due to the frequent use of euphemisms by
healthcare professionals to describe the disease and its treatment. However, because healthcare
professionals frequently rely on euphemisms to describe cancer and its treatment, lay
understanding of the illness is commonly poor (Chapman et al., 2003). In turn, mothers may not
have access to enough information to fully understand a child’s prognosis; it is estimated that
over 25% of parents feel they are not fully informed of their child’s chances of survival (Meyer
et al., 2002).
It is often assumed that a more promising prognosis is associated with higher displays of
supportive behavior from parents due to optimistic beliefs about the child’s chances of
overcoming the disease (Claflin & Barbarin, 1991). However, it could additionally be argued
that parents of children with poor prognoses act more supportively because as a child’s condition
worsens it may be increasingly more difficult to disguise fears and worries related to the
Maternal Supportiveness 9
disease’s progression. Although this research implies that mothers’ perceptions of cancer
prognosis can impact their supportive behavior, no studies could be found that specifically
investigate the relationship between maternal perception of prognosis and supportive behavior.
Coping with Pediatric Cancer
To diminish the possibility of developing problems such as depression, anxiety, or PTSD,
pediatric cancer patients and their parents must learn to cope with the stress of cancer. Coping
responses are defined as “controlled, goal-directed efforts to manage sources of stress and one’s
emotional reactions” and can be distinguished as voluntary coping responses or involuntary
stress responses (Compas et al., 2001). Factor analyses of the RSQ identify five primary factors
of coping (Connor-Smith et al., 2000): primary control engagement coping (problem solving,
emotional expression, emotional modulation), secondary control engagement coping (cognitive
restructuring, positive thinking, acceptance, distraction), disengagement coping (avoidance,
denial, wishful thinking), involuntary engagement (emotional arousal, physiological arousal,
rumination, intrusive thoughts, impulsive action), and involuntary disengagement (cognitive
interference, emotional numbing, inaction, escape).
Mothers may react to stress in a variety of ways, exhibiting a range of symptoms of
distress as they engage in different coping behaviors. For example, some may become depressed
and/or anxious, while others may not show heightened levels of distress. This variety is possibly
accounted for by factors that mediate or moderate the relationship between stress and
psychopathology (Compas et al., 2001). Coping styles may also serve as mediators/moderators,
helping to either increase or reduce manifestations of stress.
Maternal Supportiveness 10
Research suggests that primary and secondary control coping are particularly adaptive in
the face of stress and subsequently result in lower levels of externalizing and internalizing
symptoms (Compas et al., 2001). More specifically, secondary control coping has been found to
be most successful when the stressful situation is uncontrollable. In turn, as cancer can be
classified as an uncontrollable stressor, parents may find this coping style to be most helpful and
adaptive. For instance, Grootenhuis and Last (1997) demonstrated through analysis of
interviews and questionnaires that use of secondary control strategies contributes significantly to
the emotional adjustment of parents of children with cancer. Conversely, a number of studies
illustrate that disengagement coping tends to be maladaptive in the face of pediatric cancer,
relating to more internalizing problems and higher levels of maladjustment (Wittrock, Larson &
Sandgren, 1994; Hoekstra-Weebers et al., 1998). In a comprehensive review of literature on
coping with pediatric cancer, Grootenhuis and Last (1997) suggest that mothers often engage in
maladaptive styles coping behaviors, such as wishful thinking and withdrawal. Unfortunately,
when dealing with pediatric cancer, parents’ avoidant behavior is associated with increased
levels of emotional strain, which can surface in forms anxiety and depression (Hoekstra-Weebers
et al., 1998; Norberg, Lindblad, & Boman, 2005).
Current Study
As described above, there are significant gaps in the literature regarding maternal
supportive behavior and childhood cancer. Specifically, attention must be drawn to the
associations among maternal anxiety, perception of prognosis, and mothers’ abilities to provide
support to their children diagnosed with cancer. Because of the psychological and emotional
distress produced by childhood cancer, research on how families should best deal with the illness
Maternal Supportiveness 11
warrants much consideration. Moreover, because of the interpersonal nature of dealing with
cancer within the family, it is important to use behavioral observation methods in conjunction
with written self-reports to fully capture how mothers and children are coping with the cancer
experience. Observational methods have been used to study family adjustment and functioning
in a variety of pediatric populations, including children with asthma, cystic fibrosis, and diabetes
(e.g., Celano et al., 2008; DeLambo et al., 2004; Miller & Drotar, 2007). However, due to the
intensity and unpredictability of the disease and its treatment, these methods have not been
previously used in pediatric cancer populations.
The current study had two main goals: (1) to examine if maternal anxiety, perception of
cancer prognosis, and coping are related to maternal supportive behavior for their children with
cancer, and (2) to explore if these factors (anxiety, perception of prognosis, and coping) are
independent or correlated predictors of parental behaviors, as well as if one factor is a stronger
predictor than another. An overview of the study’s aims and hypothesized predictors is
displayed in Figure 1. Based on the current literature, first, I hypothesized that mothers’
increased use of secondary control coping and primary control coping would be positively
related to their observed supportive behavior toward their child. Secondly, I hypothesized that
increased use of disengagement coping and increased levels of anxiety would be inversely
related to observed supportive behavior. Because of significant limitations of the research
regarding maternal perceptions of prognosis, the relationships between maternal perceptions of
prognosis, anxiety, coping, and maternal supportive behavior were explored.
Maternal Supportiveness 12
Method
Participants
Mothers participating in the study were recruited from outpatient clinics at the pediatric
oncology centers of Vanderbilt University’s Monroe Carell Jr. Children’s Hospital and Ohio
State University’s Nationwide Children’s Hospital. The participants were additionally taking part
in a larger study from which the current sample was taken. To meet criteria for inclusion, all
mothers needed to have children between the ages 5 and 17 with a primary cancer diagnosis and
no known cognitive or developmental disabilities. To maintain the goal of recruiting mothers
close to the time of diagnosis, eligibility for recruitment began one week following the child’s
first-time diagnosis or relapse.
Between the two sites, ninety-three percent of the mothers approached and informed
about the study consented to participating by agreeing to complete the questionnaire measures.
A total of 193 mothers completed and returned the questionnaires. However, only those who
completed both the questionnaires and the observation were included in this study’s analyses,
resulting in a sample of 75 mothers between the ages of 24 and 72 (M = 37.80, SD = 8.55) of
children with cancer (58% males, ages 5 to 17 years; M = 10.33, SD = 3.88). The participants
were enrolled in the study between 8 and 122 days after their child’s diagnosis (M = 34.56, SD =
21.06). Table 1 includes demographic information for 64 of the mothers. Demographic
information for the remaining 11 mothers was not available.
The cancer diagnoses of the children were generally representative of the distribution of
diagnoses within the two institutions the sample was taken from; 43.8% of the children were
diagnosed with leukemia, 21.9% lymphoma, 7.8% brain tumor, and 26.6% another solid tumor
Maternal Supportiveness 13
(e.g., osteosarcoma, neuroblastoma, Wilm’s tumor). Fourteen percent of these children were
recruited as relapse patients. All children were in the active phase of treatment while their
mothers participated in the study.
Measures
Anxiety. Two self-report measures were used to assess maternal anxiety. First, The Beck
Anxiety Inventory (BAI; Beck, Steer, & Brown, 1996), a well-standardized measure of anxiety for
non-psychiatric samples, was used to assess general anxiety symptoms. Among the self-report
measures of anxiety for adults, the BAI has demonstrated the highest rating of discriminant validity
(Steer et al., 1993). Secondly, the Impact of Event Scale-Revised (IES-R; Weiss & Marmar,
1997) was used to measure mothers’ cancer-specific fears and worries. Specifically, the IES-R
was utilized to measure the posttraumatic stress disorder (PTSD) symptoms related to their
child’s cancer, including intrusive thoughts, avoidance, and physiological hyperarousal. The
IES-R is noted for its good reliability and validity and has frequently been used in previous
studies on parents of children with cancer (Weiss & Marmar, 1997). Internal consistency
reliability scores for the current sample were α = .93 for the IES-R, and α = .88 for the BAI.
Perception of Prognosis. Mothers’ perception of their child’s cancer prognosis was
assessed by indicating on a scale of 0 to 100% the belief that her child will be cancer-free 5 years
from the time of assessment.
Coping. To measure patterns of coping behaviors in reaction to the stress of having a
child with cancer mothers completed the Pediatric Cancer version of the Responses to Stress
Questionnaire (RSQ; Connor-Smith et al., 2000). The RSQ consists of 57 items relating to how
the mother responded to cancer-related stressors within the last 6 months and covers 5 factors of
Maternal Supportiveness 14
coping and stress responses; three factors, primary control coping, secondary control coping, and
disengagement coping were focused on in analyses. The RSQ has demonstrated good internal
consistency, test-retest reliability, as well as convergent and discriminant validity (Connor-Smith
et al., 2000).
Observed Parental Supportiveness. A fifteen-minute cancer-related videotaped
conversation between a mother-child dyad was coded using the Iowa Family Interaction Rating
Scales (IFIRS; Melby et al., 1998) to assess parental supportive behavior. IFIRS is a global
coding system with codes a variety of verbal and non-verbal behaviors on a 1-9 scale (1 being
“not at all characteristic” and 9 being “extremely characteristic”) to provide a measure of
behavioral and emotional characteristics. When compared to parent and child reports, the IFIRS
coding system has demonstrated good validity (Melby & Conger, 2001). To capture maternal
supportive behavior, the current study focused on a subset of the following codes: Listener
responsiveness (LR), Communication (CO), Warmth/Support (WM), Prosocial (PR), and Childcenteredness (CC). Internal consistency reliability for the current sample was α = .88, and
intercorrelations among the codes were calculated to ensure that they were sufficiently interrelated to represent supportive behavior (see Table 1). All interactions were double-coded by
two separate trained members of the research team for purposes of reliability.
Procedure
To recruit participants, shortly after the time of the child’s diagnosis a member of the
research team approached the eligible mothers at one of the two inpatient cancer clinics to
describe the study and inquire if they were interesting in participating in the study. If interested,
mothers filled out an informed consent form, approved by the Institutional Review Boards at
Maternal Supportiveness 15
both sites, and were then given a questionnaire packet to complete. These packets, which
included all self-report measures described above, could be filled out either within the hospital
setting or the home and once completed were collected at the clinic or mailed in by the
participants.
After completing the questionnaires, at approximately three months post-diagnosis
mothers were again approached and presented with information regarding the behavioral
observation portion of the study. If interested, parents signed an informed consent form and
were videotaped in a private room within the clinic having a 15-minute cancer-related
conversation with their child, prompted by a series of written questions. Seventy-three percent of
mother-child dyads completed the observation within three months of the child’s diagnosis.
Data Analytic Approach
First, bivariate correlations were calculated to address the first aim of the study, in order
to assess the relationships between maternal anxiety, perception of cancer prognosis, coping
(primary control, secondary control, and disengagement) and observed supportive behavior. In
turn, correlational analyses were conducted between the BAI, the IES-R, the RSQ,
supportiveness IFIRS codes, and the prognosis rating scale. Proportion scores for each coping
factor were calculated to control for individual differences and response bias by dividing each
factor’s total score by the total score for all items in the RSQ (Connor-Smith et al., 2000).
Second, linear multiple regression analyses were conducted to address the second aim of the
study, to explore if maternal anxiety, perception of prognosis, and coping are independent or
correlated predictors of parental behaviors. Regression analyses were additionally utilized to
Maternal Supportiveness 16
determine if one of these factors was a stronger predictor of maternal supportiveness than
another.
Results
Preliminary Analyses
To ensure that the study’s sample was representative of the general population of mothers
with children with cancer, independent sample t-tests were completed to compare available
demographic information between mothers who did complete the observational phase (n = 64)
and mothers who did not complete the observational phase (n = 118). Results indicated that
mothers who did versus mothers who did not complete the observation did not differ on child’s
diagnosis type (t (192) = .72, ns), new diagnosis or relapse status (t (192) = .16, ns), marital
status (t (187) = -.71, ns), level of education (t (187) = -1.45, ns), age t (188) = .21, ns),
socioeconomic (t (188) = -.67, ns) , (race t (188) = .28, ns), or ethnicity (t (185) = .68, ns).
These results indicate that the study’s sample is sufficiently representative of mothers of children
with cancer at the study’s two sites.
Descriptive Statistics
Means, standard deviations, minimum, and maximum scores for maternal perception of
prognosis, supportiveness, anxiety, and coping are presented in Table 2. Mothers’ composite
scores of the IFIRS codes, representing supportiveness, ranged from 14-45 (M = 32.21, SD =
5.02). Among the codes, mothers’ mean score was highest for Communication (M = 7.03, SD =
0.85), while the mean score was lowest for Warmth/Support (M = 5.68, SD = 1.65). Mothers’
scores on the perception of prognosis scale ranged from 0 to 100, with a mean score of 81.77
(SD = 20.06), representing that mothers on average believed that their children had
Maternal Supportiveness 17
approximately an 82% chance of being cancer-free five years from the time of assessment.
Mothers’ mean score (M = 11.26, SD = 8.85) on the BAI fell within the “mild anxiety” range.
Furthermore, the mean on the IES-R (M = 28.74, SD = 17.06) was higher than the recommended
cut-off score of 22 to predict a PTSD diagnosis (Rash et al., 2008). Means and standard
deviations for the RSQ indicated that mothers used the most secondary control coping (M = .27,
SD = .06), followed by primary control coping (M = .20, SD = .04), and used the least
disengagement coping (M = .13, SD = .03).
Aim 1: Correlational Analyses
Bivariate correlations were used to investigate the associations between maternal
perception of prognosis, anxiety, coping, and supportiveness. Correlational analyses are
displayed in Table 2. A more positive perception prognosis was inversely related to general
anxiety (BAI; r = -.31, p < .05), but not cancer-specific anxiety (IES-R; r = -.07, ns). In regards
to coping, as hypothesized increased use of primary control coping and secondary control coping
was inversely related to cancer-specific anxiety (IES-R; r ‘s = -.59 and -.76, p’s < .01,
respectively) and general anxiety (BAI; r’s = -.46 and -.52, p’s <.01). Also as hypothesized,
increased use of disengagement coping was associated with increased levels of general anxiety
(BAI: r = .32, p < .05) and cancer-specific anxiety (IES: r = .61, p < .01). Increased use of
primary control coping was additionally associated with higher levels of maternal supportiveness
(r = .27, p <. 05). Maternal supportiveness was not significantly related to any other measures in
the correlational analyses.
Maternal Supportiveness 18
Aim 2: Regression Analyses
The associations of maternal perception of prognosis, anxiety, and coping were examined
in a linear multiple regression model with maternal supportiveness as the dependent variable.
The regression analysis is displayed in Table 4. The second step of the regression analysis
revealed that maternal use of primary control coping strategies was a significant predictor of
maternal supportiveness (β = .38, p < .05) when added to maternal use of disengagement coping.
In the third step, after use of secondary control coping was added to the equation, primary
control coping remained a significant predictor (β = .38, p < .05). Mothers’ perception of
prognosis was added in the fourth step and use of primary control coping again remained a
significant predictor (β = .37, p < .05). In the fifth step, cancer-related anxiety was included.
Use of primary control coping strategies continued to remain as a significant predictor of
supportiveness (β = .43, p < .05). When general anxiety was added in the final step of the
regression equation, no predictors remained significant. However, the magnitude of the
relationship with primary control coping remained a medium effect (β = .36) and approached
significance (p = 083).
Discussion
Having a child receive a cancer diagnosis can be an extremely stressful and even
devastating experience for mothers. The resulting psychological repercussions of the cancer
experience within the family consequently warrant much attention, especially given the critical
supportive role that mothers are typically expected to undertake. This study investigated the
association of maternal perception of prognosis, anxiety, and coping with maternal
supportiveness for children with cancer.
Maternal Supportiveness 19
According to the literature, disengagement coping can be a maladaptive strategy for
dealing with stress while primary and secondary control coping have shown to be effective in
reducing psychopathology and aiding in adjustment (e.g., Compas et al., 2001). Similarly, in the
current study bivariate correlations indicated that mothers with increased use of disengagement
coping had increased levels of both cancer-specific and general anxiety, as hypothesized.
Meanwhile, also as hypothesized, mothers who exercised more secondary control coping and
primary control coping maintained lower levels of cancer-specific and general anxiety. In turn,
avoidance of cancer-related stress may have the consequence of elevating anxiety – both directly
related to cancer and more broadly – for these mothers. However, elevated levels of anxiety may
alternatively cause mothers to be more avoidant of cancer-related stressors. Similarly, mothers
lower in anxiety may find it easier to engage in more adaptive coping strategies such as primary
and secondary control coping. Research suggests that parents’ emotional distress typically peaks
within the first year following of their child’s cancer treatment (Sawyer et al., 2000). The larger
study from which the current sample was drawn from includes data from 12-months postdiagnosis and thus should be included in future investigations to determine the direction of these
relationships.
The potential benefits of primary control coping on maternal adjustment were also
displayed through a positive association between primary control coping and observed maternal
supportiveness. Based on the linear multiple regression analyses, primary control coping was the
only significant independent predictor of observed maternal supportiveness. This finding again
implies that primary control coping may be a particularly adaptive coping strategy for managing
cancer-related stressors, as compared to disengagement coping and secondary control coping.
Maternal Supportiveness 20
Because primary control coping involves acting directly on a source of stress or one’s emotional
reactions, specific strategies such as problem-solving, emotional expression, and emotional
modulation could be especially adaptive and beneficial to overcome cancer-related stressors and
provide support. For example, problem solving may help mothers juggle the ever-changing,
hectic schedule of cancer treatment and deal with other issues of finances and accommodating
other activities outside the hospital. Emotional expression and modulation may also allow
mothers to be conscientious of how they model and display their emotions and regulate their
emotions in front of their children. By regulating one’s emotions, mothers may additionally be
able to gain emotional stability, which in turn could enable them to be able to be more supportive
of their children.
Perception of prognosis, however, was not significantly associated maternal supportive
behavior, suggesting that mothers may continue to display significant emotional support for their
children regardless of how they interpret the chances that their children will be free of cancer in
the near future. As mentioned, there has been little investigation of how maternal perceptions of
prognosis are associated with various measures of adjustment or supportiveness. Further research
is necessary regarding this topic in order to reach conclusions.
Additional exploratory analyses of maternal perception of prognosis indicated that
mothers who maintained a more positive outlook on the chances that their children would be
cancer-free in five years reported experiencing low levels of general anxiety. Hence, the level of
anxiety mothers feel may be directly affected by how they positive or negative they perceive
their children’s cancer prognosis to be. However, according to the current sample, mothers of
children with cancer may have only mildly elevated levels of general anxiety overall, despite the
Maternal Supportiveness 21
stressful nature of cancer and its treatment. These findings are consistent with other studies of
anxiety in mothers of children with cancer (Greening & Stoppelbein, 2007; Kazak et al., 1997;
Roddenberry & Renk, 2008). Nevertheless, also mirroring the current literature, elevated scores
from the current sample on the IES-R indicate that mothers of children with cancer are at
clinically significant risk for Post-Traumatic Stress Disorder and its symptoms. Thus, cancerspecific anxiety may significantly impair mothers’ abilities to be supportive with their children,
as they may feel hindered and overwhelmed by their own PTSD symptoms.
Despite promising findings, there are several limitations in the current study that should
be addressed. First, few studies involving life-threatening illnesses have utilized observational
methodology – particularly in pediatric populations. The interpersonal nature between child and
parent of the cancer experience is not to be overlooked and in turn research using observational
methods can be beneficial for capturing supportive behaviors as they occur and should therefore
be included in future studies. Additional studies including observational measures such as the
IFIRS should be conducted in order to establish the validity of this form of assessment. Because
of this, if repeated the current study should include additional written measures of supportiveness
to gain a more comprehensive assessment. Secondly, although recruitment rates were
significantly high, fewer mothers who had completed the questionnaires agreed to participate in
the observational phase as desired. This raises questions concerning the feasibility and
acceptability of the observational phase of the study and limited the final sample size. A larger
sample size would have increased the statistical power to detect significant statistical findings.
Furthermore, the measure of maternal perception of prognosis was relatively narrow, as it relied
on only one question. Therefore, a more in-depth measure should be designed to capture more
Maternal Supportiveness 22
dimensions of prognosis. Lastly, although while the larger sample from which the current study
was drawn from includes both mothers and fathers, the data analyses in the current study only
included mothers of children with cancer. However, supportiveness is not exclusively a task for
mothers; fathers also can serve as important sources of support for their children, and mothers
and fathers (or primary and secondary caregivers) may work together to provide support.
Children with cancer and their mothers are incredibly vulnerable populations who are
thrown into a world of medical confusion with little guidance. While results from this study
show that mothers do demonstrate relatively high levels of support during their children’s
treatment, room for improvement remains. Mothers continue to find it challenging to be
supportive of their children because of the wide variety of cancer-related stressors and the
limitation in available resources on how to best extend emotional support in a sensitive,
informed, and accommodating manner. Consequently, it is crucial that future research focuses
on discovering specific empirical evidence on the most effective and beneficial strategies for
providing support for children with cancer. According to the findings of this study, primary
control coping may be especially beneficial in helping mothers be able to be supportive. This
suggests that teaching emotional modulation, emotional expression, and problem solving to
mothers may prove to have a particularly positive impact on maternal supportiveness. Finally,
because of the increased risk that mothers of children with cancer will develop PTSD, an
incorporation of how to deal with the disorder and its symptoms within interventions and
guidelines of supportiveness would also likely be beneficial.
Maternal Supportiveness 23
References
American Cancer Society. Cancer Facts and Figures 2007. Atlanta, GA: American Cancer
Society. Retrieved December 26, 2007, from
http://www.cancer.org/downloads/STT/CAFF2007PWSecured.pdf.
Beck, A.T. & Steer, R.A., 1990. Manual for the Beck Anxiety Inventory. , The Psychological
Corporation, San Antonio, Tex.
Bruce, M. (2006). A systematic and conceptual review of posttraumatic stress in childhood
cancer survivors and their parents. Clinical Psychology Review, 26, 233-256.
Celano, M., Bakeman, R., Gaytan, S., Smith, C.O., Koci, A., & Henderson, S. (2008). Caregiver
depressive symptoms and observed family interaction in low-income children with
persistent asthma. Family Process, 47, 7-20.
Claflin, C. J., & Barbarin, O. A. (1991). Does “telling” less protect more? Relationships
among age, Information disclosure, and what children with cancer see and feel. Journal
of Pediatric Psychology, 16, 169 –192.
Compas, B. E., Connor, J.K., Saltzman, H., Thomsen, A.H., & Wadsworth, M.E. (2001).
Coping with stress during childhood and adolescence: problems, progress, and potential
in theory and research. Psychological Bulletin, 127, 87-127.
Connor-Smith, J.K., Compas, B.E., Wadsworth, M.E., Thomsen, A.H., & Saltzman, H. (2000).
Responses to stress in adolescence: Measurement of coping and involuntary stress
responses. Journal of Consulting and Clinical Psychology, 68, 976-992.
Maternal Supportiveness 24
DeLambo, K.E., Levers-Landis, C.E., Drotar, D., & Quittner, A.L. (2004). Association of
observed family relationship quality and problem-solving skills with treatment adherence
in older children with adolescents with cystic fibrosis. Journal of Pediatric Psychology,
29, 343-353.
Ellis, R., & Leventhal, B. (1993). Information needs and decision-making preferences of children
with cancer. Psycho-Oncology, 2, 277-284.
Fotiadou, M., Barlow, J. H., Powell, L. A. & Langton, H. (2008). Optimism and psychological
well-being among parents of children with cancer: an exploratory study. PsychoOncology, 17, 401-409.
Grant, K. E., Behling, S., Gipson, P. Y., & Ford, R. E. (2005). Adolescent stress: the
relationship between stress and mental health problems. The Prevention Researcher, 12,
3-6.
Greening, L. & Stoppelbein, L. (2007). Brief report: pediatric cancer, parental coping
style, and risk for depressive, posttraumatic stress, and anxiety symptoms. Journal
of Pediatric Psychology, 32, 1272-1277.
Grootenhuis, M. A., & Last, B. F. (1997). Predictors of parental emotional adjustment to
childhood cancer. Psycho-Oncology, 6, 115-128.
Hilden, J. M., Watterson, J., & Chrastek, J. (2000). Tell the children. Journal of Clinical
Oncology, 18, 3193-3195.
Hoekstra-Weebers, Heuval, F., J.E. Jaspers, J.P., Kamps, W.A. & Klip, E.C. (1998). Brief report:
an intervention program for parents of pediatric cancer patients: a randomized controlled
trial. J Pediatr Psychol, 23, 207-214.
Maternal Supportiveness 25
Kazak, A. E. (1998). Posttraumatic distress in childhood cancer survivors and their
parents. Medical & Pediatric Oncology Supplement, 1, 60-68.
Kazak, A. E., Alderfer, M., Rourke, M. T., Simms, S., Streisand, R., & Grossman, J. R. (2004).
Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in
families of adolescent childhood cancer survivors. Journal of Pediatric Psychology, 29,
211-219.
Kazak, A. E., Meeske, K., Penati, B., Barakat, L., Christakis, D., Meadows, A. T., et al.
(1997). Posttraumatic stress, family functioning, and social
support in survivors of childhood leukemia and their mothers and fathers. Journal
of Consulting and Clinical Psychology, 65, 120-129.
Melby, J. N., Conger, R. D., Book, R., Reuter, M., Lucy, L., & Repinski, D. (1998). The Iowa
Family Interaction Rating Scales (5th Ed.).Unpublished manuscript, Ames Institute for
Social and Behavioral Research, Iowa State University.
Melby, J. N., & Conger, R. D. (2001). The Iowa Family Interaction Rating Scales: Instrument
summary. In P. K. Kerig & K. M. Lindahl (Eds.), Family Observational Coding Systems
(pp. 33-58). Mahway, NJ: Lawrence Erlbaum.
Meyer, E., Burns, J., Griffith, J., & Truog, R. (2002). Parental perspectives on end-of-life care in
the pediatric intensive care unit. Crit Care Med, 30, 226-231.
Miller, V.A., & Drotar, D. (2007). Decision-making competence and adherence to treatment in
adolescents with diabetes. Journal of Pediatric Psychology, 32, 178-188.
Moore, P.S., Whaley, SE., & Sigman, M. (2004). Interactions between mothers and children:
Impacts of maternal and child anxiety. Journal of Abnormal Psychology, 113, 471-476.
Maternal Supportiveness 26
National Cancer Institute, (2008). A Snapshot of pediatric cancers Retrieved from
http://www.nci.nih.gov/aboutnci/servingpeople/pediatric-snapshot.pdf
Norberg, A.L., Lindblad, F., & Bowman, K.K. (2005). Coping strategies in parents of children
with cancer. Social Science & Medicine, 60, 965-975.
Noll, R. B., Gartstein, M. A., Hawkins, A., Vannatta, K., Davies, W. H., & Bukowski, W. M.
(1995). Comparing parental distress for families with children who have cancer and
matched comparison families without children with cancer. Family Systems Medicine, 13,
11-27.
Pai, A. L. H., Greenley, R. N., Lewandowski, A., Drotar, D., Youngstrom, E. & Peterson, C. C.
(2007). A meta-analytic review of the influence of pediatric cancer on parent and family
functioning. Journal of Family Psychology, 21, 407-415.
Ries, L. A. G., Eisner, M. P., Kosary, C. L., Hankey, B. F., Miller, B. A., Clegg, L., et al.
(Eds.). (2004). SEER Cancer Statistics Review, 1975-2001. Bethesda, MD: National
Cancer Institute.
Roddenberry, A. & Renk, K. (2008). Quality of life in pediatric cancer patients: The
relationships among parents’ characteristics, children’s characteristics, and
informant concordance. Journal of Child & Family Studies, 17, 402-426.
Sawyer, M., Antoniou, G., Toogood, I., Rice, M., & Baghurst, P. (2000). Childhood cancer: a 4year prospective study of the psychological adjustment of children and parents. Journal
of Pediatric Hematology and Oncology, 22, 214-220.
Scheier, M. F. & Carver, C. S. (1985). Optimism, coping, and health: assessment and
implications of generalized outcome expectancies. Health Psychology, 4, 219-247.
Maternal Supportiveness 27
Slavin, L. A., O'Malley, J. E., Koocher, G. P., & Foster, D. J. (1982). Communication of the
cancer diagnosis to pediatric patients: Impact on long-term adjustment. The American
Journal of Psychiatry, 139, 179-183.
Steer, R.A., Ranieri, Beck, A.T., & Clark, D.A. (1993). Further evidence for the validity
of the Beck Anxiety Inventory with psychiatric outpatients. Journal of Anxiety
Disorders, 7, 195-205.
United States Cancer Statistics (USCS; 2005). National Institutes of Health, National Cancer
Institute: A Snapshot of Pediatric Cancer. Retrieved March 20, 2009, from
http://planning.cancer.gov/disease/Pediatric-Snapshot.pdf
Weiss, D. S. & Marmar, C. R. (1997). The Impact of Event Scale –Revised. In Wilson, J.
P. & Kean, T. M. (Eds.), Assessing Psychological Trauma and PTSD (pp. 399 –
411). New York: The Guilford Press.
Wittrock, D.A., Larson, L.S., & Sandgren, A.K. (1994). When a child is diagnosed with cancer:
II. parental coping, psychological adjustment, and relationships with medical personnel.
Journal of Psychosocial Oncology 12, 17–32.
Wood, J., McLeod, B., Sibman, M., Hwang, W., & CHu, B. (2003). Parenting and childhood
anxiety: Theory, empirical findings, and future directions. Journal of Child Psychology
and Psychiatry and Allied Disciplines, 44,134-151.
Young, B., Dixon-Woods, M., Windridge, K. C., & Heney D. (2003) Managing communication
with young people who have a potentially threatening chronic illness: qualitative study of
patients and parents. British Medical Journal, 326, 305-308.
Maternal Supportiveness 28
Figure Captions
Figure 1. Hypothesized predictors of maternal supportive behavior. Potential pathways of the
association among maternal perception of prognosis, general and cancer-specific anxiety,
primary control coping, secondary control coping, disengagement coping and maternal
supportive behavior for children with cancer.
Maternal Supportiveness 29
Diagnosis
3Months Post-Diagnosis
Perception of
Prognosis
(Prognosis Scale)
General Anxiety
(BAI)
Cancer-Specific
Anxiety
(IES-R)
Primary Control
Coping
(RSQ)
Secondary Control
Coping
(RSQ)
Disengagement
Coping
(RSQ)
Observed Maternal Supportive
Behavior
(IFIRS)
Maternal Supportiveness 30
Table 1. Maternal Demographic Variables
Age [mean (SD)]
Race [n (%)]
White
African-American
Asian-American
Ethnicity [n (%)]
Hispanic/Latino
Not Hispanic/Latino
Annual Family Income [n (%)]
< $25,000
$25,001 – $50,000
$50,001 – $75,000
$75,001 – $100,000
> $100,000
Education [n (%)]
Some high school
Graduated high school
Some technical school
Graduated technical school
Some college
Graduated college
One or more years graduate school
Marital Status [n (%)]
Married/Living with Someone
Single, Divorced, Separated, or Widowed
Mothers (n = 64)
37.8 (8.5)
55 (85.9)
8 (12.5)
1 (1.6)
2 (3.2)
61(96.8)
17 (26.6)
20 (31.3)
6 (9.4)
5 (7.8)
16 (25.0)
3 (4.8)
17 (26.6)
6 (9.4)
3 (4.7)
16 (25.0)
13 (20.3)
6 (9.4)
50 (78.1)
14 (21.9)
Maternal Supportiveness 31
Table 2. Descriptive Statistics of Perception of Prognosis, Supportiveness, Anxiety, and Coping
Perception of Prognosis
(Prognosis Scale; n = 62)
Mean (SD)
Min
Max
81.77(20.06)
0
100
14.0
1.0
3.0
4.0
3.0
2.0
45.0
9.0
9.0
9.0
9.0
9.0
0
68.0
0
33.6
0.13
0.16
0.08
0.30
0.41
0.20
Supportiveness
(IFIRS; n = 75)
Total
32.21(5.03)
Warmth/Support
5.68(1.65)
Listener Responsiveness 6.59 (1.12)
Communication
7.03 (0.85)
Prosocial
6.55 (1.07)
Child-Centered
6.40 (1.27)
Cancer-Related Anxiety
(IES-R; n = 63)
28.74 (17.06)
Anxiety
(BAI; n = 63)
11.26 (8.85)
Coping
(RSQ; n = 64)
Primary Control
0.20 (0.04)
Secondary Control
0.27 (0.06)
Disengagement
0.13 (0.03)
Maternal Supportiveness 32
Table 3. Correlation Analyses
1
1. Supportiveness
2. Prognosis
3. Warmth/Support (WM)
4. Listener Responsiveness (LR)
5. Communication (CO)
6. Prosocial (PR)
7. Child Centered (CC)
8. IES-R
9. BAI
10. Primary Control Coping
11. Secondary Control Coping
12. Disengagement Coping
Note.* p < .05. ** p < .01
-.10
.84**
.84**
.84**
.79**
.89**
-.07
-.23
.27*
.06
-.07
2
--.01
.16
.15
.20
-.01
-.21
-.31*
.17
.19
-.01
3
-.54**
.56**
.57**
.66**
.03
-.12
.06
.04
-.01
4
-.72**
.65**
.71**
-.10
-.17
.28*
.10
-.13
5
-.59**
.78**
-.09
-.30*
.36**
.02
-.12
6
-.60**
-.07
-.18
.23
.09
-.04
7
--.09
-.26*
.30*
-.00
-.03
8
-.59**
-.59**
-.76**
.61**
9
--.46**
-.52**
.32*
10
--.46**
-.68**
11
--.75**
12
--
Maternal Supportiveness 33
Table 4. Regression Analyses Testing Coping, Perception of Prognosis, and Anxiety as
Predictors of Maternal Supportiveness
DV: Maternal Supportiveness
Block 1 R2 Δ = .005
Disengagement Coping
β
-.067
Block 2 R2 Δ = .093*
Disengagement Coping
Primary Control Coping
.183
.378*
Block 3 R2 Δ = .001
Disengagement Coping
Primary Control Coping
Secondary Control Coping
.225
.383*
.052
Block 4 R2 Δ = .000
Disengagement Coping
Primary Control Coping
Secondary Control Coping
Perception of Prognosis
.210
.374*
.041
.027
Block 5 R2 Δ = .013
Disengagement Coping
Primary Control Coping
Secondary Control Coping
Perception of Prognosis
Cancer-Related Anxiety (IES)
.232
.428*
.146
.032
.153
Block 6 R2 Δ = .022
Disengagement Coping
Primary Control Coping
Secondary Control Coping
Perception of Prognosis
Cancer-Related Anxiety (IES)
General Anxiety (BAI)
.141
.358+
.054
.010
.205
-.204
Model R2 = .135
Note. Model values are Adjusted R2. β = standardized beta. * p < .05; + p < .10.
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