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 _________________________________________ ____________________________ 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. 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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.