Psycho-Oncology Psycho-Oncology 25: 339–346 (2016) Published online 12 May 2015 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3848
Relationships between parenting self-efficacy and distress in parents who have school-aged children and have been treated with hematopoietic stem cell transplant or have no cancer history Julie M. Cessna1,2*, Joseph Pidala1 and Paul B. Jacobsen1 1 2
Moffitt Cancer Center, Tampa, FL, USA University of South Florida, Tampa, FL, USA
*Correspondence to: University of South Florida, 4202 East Fowler Avenue, PCD4118G, Tampa, FL 33620, USA. E-mail: [email protected]. edu
Received: 27 July 2014 Revised: 17 March 2015 Accepted: 14 April 2015
Abstract Objective: Studies demonstrate that parents with cancer experience distress and that parenting selfefficacy (PSE) is related to distress among parents without cancer. However, no study to date has examined the relationships between PSE and psychological distress among parents with cancer. This study sought to address this issue by comparing parents with cancer who had undergone hematopoietic stem cell transplantation (HSCT) to parents without cancer on measures of PSE and psychological distress. Methods: A sample of 57 patients diagnosed with cancer who had undergone HSCT and a control group of 57 parents with no history of cancer were recruited for participation in the study. Medical record reviews assessed clinical variables, and participants filled out self-report measures of demographics, PSE, general self-efficacy, and psychological distress. Results: As hypothesized, parents with cancer reported less PSE and more psychological distress than controls (all p-values ≤ 0.05). Furthermore, findings indicated that both PSE and general selfefficacy mediated the relationship between cancer status and psychological distress. Conclusions: Findings expand understanding of the potential sources of distress among parents with cancer who have been treated with HSCT and who have school-aged children. They also suggest that interventions aimed at reducing distress in these individuals should seek to target both parenting and general self-efficacy. Copyright © 2015 John Wiley & Sons, Ltd.
Background An estimated 14% of cancer survivors have minor children living in their household; this figure equates to 1.58 million people in the USA [1]. Despite the relatively large number of affected individuals, relatively little is known about the extent to which having cancer affects the parenting experience. Moreover, the possibility that concerns about the ability to parent could influence distress in parents with cancer has not been systematically evaluated. Parents with cancer may experience distress if they put their own needs before those of their children, or if they do not feel confident in their ability to meet the needs of their children. Qualitative studies show that many parents with cancer are concerned about their ability to communicate about their illness, struggle to maintain a normal routine at home, and report they lack energy to perform daily parenting activities [2–4]. Quantitative studies comparing parents with cancer with general population norms show that a high proportion of parents with cancer score above clinical cutoffs for anxiety, depression, and psychological distress [5–8]. One Copyright © 2015 John Wiley & Sons, Ltd.
limitation of these studies is that they compare cancer patients with norms for the general population instead of to a control group. Only one study to date has employed a more rigorous case–control design to address this issue, but it did not include fathers [9]. This study found that mothers with breast cancer reported worse psychosocial adjustment and greater psychological distress than mothers who did not have breast cancer [9]. A number of studies have examined sociodemographic and clinical correlates of psychological distress among parents with cancer [7,10], but only one study to date has investigated the link between psychosocial variables and distress among parents with cancer [5]. This study found that higher levels of perceived stress were related to increased depression and anxiety [5]. The current study seeks to expand knowledge of contributory psychosocial factors by examining the relationship between parenting self-efficacy (PSE) and distress among parents with cancer. Parenting self-efficacy can be defined as caregivers’ confidence in their ability to successfully raise their children [11]. This construct stems from Bandura’s work on
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personal efficacy and human agency, which theorizes that actions are influenced by perceptions about the ability to perform behaviors [12]. When applied to parenting, it can be theorized that caregivers who do not feel confident in their ability to parent may be less likely to engage in positive parenting behaviors and may tend to give up easily when challenges arise, such as coping with cancer. This situation, in turn, may reinforce perceptions of low self-efficacy. Research has demonstrated a robust relationship between PSE and positive parenting practices such as parental involvement, responsiveness, and limit-setting among parents from the general population [13–15]. Additionally, greater PSE has been associated with better child adjustment and fewer child behavioral problems [11,14]. Intervention studies also provide support for this relationship by demonstrating that PSE can be increased through family interventions designed to promote positive parenting practices, and that these increases are associated with more positive parenting behaviors and better child adjustment [16–18]. Although no studies to date have examined the relationship between PSE and psychological distress in parents with cancer, PSE has been associated with psychological distress in other populations. Cross-sectional and longitudinal studies have shown an inverse relationship between PSE and depression, such that lower levels of PSE are related to higher levels of depressive symptoms [19–23]. The focus of the current study was on parents with cancer who had undergone hematopoietic stem cell transplantation (HSCT) in the past 2–48 months. While survival rates after HSCT have increased owing to advances in care, patients often require extended hospitalization and time recovering from treatment, and many suffer from significant short-term and long-term treatment side effects, such as nausea, infections, graft-versus-host disease, pain, fatigue, and insomnia [24–30]. Consistent with this pattern, studies have demonstrated that HSCT negatively affects patients’ quality of life during treatment and for many years following treatment [31]. It was expected that HSCT would have been particularly distressing for parents with school-aged children because they may have experienced profound disruptions in family life surrounding the procedures and may be currently dealing with significant quality of life issues while also attempting to fulfill their parenting responsibilities. The current study had three aims. Aim 1 was to determine the relationship of cancer status with PSE, cancerrelated PSE, and psychological distress in parents with cancer. It was hypothesized that parents with cancer would report lower PSE, lower cancer-related PSE, and higher levels of distress than parents without cancer. Aim 2 was to determine the relationship between PSE, cancer-related PSE, and psychological distress. It was hypothesized that lower PSE and lower cancer-related PSE would be related to higher levels of distress. Aim 3 was to explore whether Copyright © 2015 John Wiley & Sons, Ltd.
PSE, cancer-related PSE, and/or general self-efficacy (GSE) mediates the relationship between cancer status and distress.
Methods Participants Eligibility criteria
Participants were parents who had been diagnosed with cancer and undergone HSCT and a control group of parents with no history of cancer. Participants in both the patient and control groups met the following eligibility criteria: (1) have at least one child between 5 and 18 years of age living in the household for whom they are involved in parenting, (2) able to read and speak English, (3) able to provide informed consent, and (4) 18 years of age or older. Additionally, participants in the patient group were required to have completed HSCT within the past 2– 48 months, and participants in the control group were required to have no history of cancer except non-melanoma skin cancer. This study was approved by the University of South Florida Institutional Review Board.
Procedure Patients
A list of patients who underwent HSCT in the past 2–48 months was obtained from the Moffitt Cancer Center Blood and Marrow Transplant Program. Patients were screened via medical record review to determine if they met eligibility criteria. Potential participants were approached during a follow-up visit in the clinic or by phone to have the study protocol explained. If eligible and interested, informed consent was obtained, or a form was given to the participant to take home to sign, along with a packet of selfreport measures to complete. Controls
Participants for the control group were recruited via community outreach. A flyer providing study information was posted in community settings and e-mailed to the staff of community organizations. Those who expressed interest in participating were contacted by phone to determine if they were eligible. Those who were eligible and verbally agreed were mailed a packet containing an informed consent form, a study questionnaire, and a postage-paid return envelope. All participants were asked to fill out the measures for one child within the age range of 5–18 years. If they had more than one child in that age range, they were asked to complete the measures for the child whose first name came first in alphabetic order. All participants were paid $20 upon study completion. Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
Parenting self-efficacy and distress among parents with cancer
Measures Demographic characteristics
The following demographic characteristics were assessed using a standardized self-report form: age, gender, race, ethnicity, marital status, income, employment status, and education. In addition, each child’s age and sex were assessed. Clinical characteristics
The following clinical characteristics were assessed for the patient group via medical chart review: type of cancer, date of diagnosis, date of HSCT, type of HSCT, and current disease status. Parenting involvement
Used previously in a study examining parental involvement and family adjustment [32], parenting involvement in childcare was assessed by asking participants ‘What percentage of all the child care and things that have to be done for the children in your household do you do?’ Responses could range from 0% to 100%. Child referral for psychological or behavioral problems
Child referral for psychological or behavioral problems was assessed by asking participants ‘Has this child been referred to or seen by a mental health professional, such as a licensed psychologist or psychiatrist, in the past six months?’ General self-efficacy
The Generalized Self-Efficacy Scale (GSES) was used to assess perceptions about one’s ability to cope with difficult situations. The GSES is composed of ten items rated on a 4-point response scale, with a range from 1 = not at all true to 4 = somewhat true [33]. This measure demonstrated adequate internal consistency reliability (α = 0.85). Parenting self-efficacy
Parenting self-efficacy was assessed using the 36-item Self-Efficacy Parenting Tasks Index (SEPTI). The SEPTI measures PSE in five domains: achievement, recreation, discipline, nurturance, and health [34,35]. Items are rated on a 6-point scale ranging from 1 = strongly disagree to 6 = strongly agree. This measure demonstrated adequate internal consistency reliability (α = 0.91). Cancer-related parenting self-efficacy
A new measure, the 24-item Cancer-Related Parenting Self-Efficacy Scale (CaPSE), was created to assess PSE for tasks that were thought to be particularly relevant to cancer patients. Items are rated on a 6-point scale ranging from 1 = strongly disagree to 6 = strongly agree for how Copyright © 2015 John Wiley & Sons, Ltd.
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confident parents feel about their ability to perform certain tasks. Initial development involved creating an item pool by adapting questions from other validated measures of PSE, and adding new items designed to assess self-efficacy for parenting tasks that might be particularly difficult for parents who may have certain limitations due to cancer and its treatment (e.g., ‘I am confident in my ability to physically care for my child’). Items were reviewed by five experts in psycho-oncology for face validity. These items were then administered to five parents with cancer, who were then debriefed using cognitive interviewing in order to determine question comprehension and relevance. Based on patient feedback, items that were deemed redundant were eliminated, and those deemed unclear were re-worded. The final set of 24 CaPSE items (Supporting Information) demonstrated adequate internal consistency reliability (α = 0.94). Additionally, the CaPSE demonstrated convergent validity with another measure of PSE, the SEPTI (r = 0.67, p < 0.001). Psychological distress
General psychological distress was assessed using the 53item Brief Symptom Inventory [36]. Items are rated on a 5-point scale ranging from 0 = not at all to 4 = extremely. For the purpose of this study, the Brief Symptom Inventory Global Severity Index was used to indicate the intensity of perceived distress. The Global Severity Index demonstrated adequate internal consistency reliability (α = 0.93).
Statistical analyses Before conducting the main analyses, independent samples t-tests or chi-square tests were performed to determine whether or not the groups differed on demographic variables. If the groups differed significantly on a variable (p ≤ 0.05) and the variable was significantly related to PSE or distress, then it was included as a covariate in subsequent analyses. In order to determine the relationship of cancer status with PSE and distress, analysis of covariance was conducted to compare mean levels of PSE between patients and controls on PSE, cancer-related PSE, and psychological distress after controlling for relevant covariates. In order to determine the relationship between PSE and distress, a partial correlation was calculated to determine if there was a significant association between distress and PSE after controlling for relevant covariates. Mediational analyses were performed using Baron and Kenny’s [37] criteria and bootstrapping to explore whether PSE or GSE mediates the relationship of cancer status with psychological distress. Path coefficients and bootstrap confidence intervals (CIs) for effect were estimated using an SPSS macro created by Preacher and Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
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Hayes to determine the significance of the potential mediators [38]. The accrual target was 120 (60 participants per group), which yielded 80% power to detect a medium between group effect size of 0.5 with an α = 0.05 (two tailed).
Results Participant characteristics One thousand four hundred and twenty-four patients were screened for this study; of these, 1169 were ineligible based on medical record reviews. The remaining 255 participants were approached for participation. Of these, 114 were unable to be contacted by phone, 46 refused to participate, and 95 agreed to participate (67% of those able to be contacted). Of those who agreed to participate, 36 never completed the study measures and could not be reached again, and two were found to be ineligible after participating. Thus, analyses were conducted on 57 patients with evaluable data. Because control participants were self-nominated, the participation rate could not be calculated for this group. Fifty-seven controls provided evaluable data. Participant demographic and clinical characteristics are shown in Table 1. The groups differed on age, gender, years of education, current employment, annual gross income, and focus child age (p-values ≤ 0.05), such that patients were older, more likely to be male, less educated, less likely to be employed, had a lower income, and had a focus child who was older than controls (Table 1). Among these variables, only participant age and focus child age were correlated (p-values ≤ 0.05) with PSE (rs = 0.27) or cancer-related PSE (rs = 0.30 and 0.19, respectively). Therefore, participant and focus child age were included as covariates in subsequent analyses. Previous research in the general population indicates that mothers report greater PSE than fathers [35]. However, in this sample, gender was not significantly related to PSE or cancer-related PSE (all p-values > 0.18).
Comparison of patients and controls on parenting self-efficacy and psychological distress To address the first hypothesis, comparisons were made using analysis of covariance between patients and controls on measures of PSE and cancer-related PSE. Only cancerrelated PSE, demonstrated a group difference (p = 0.05), such that patients reported less cancer-related PSE than controls (Table 2). Although no hypothesis was offered regarding GSE, an analysis was conducted, which indicated that patients reported less GSE than controls (p = 0.02, Table 2). To address the second hypothesis, comparisons were made between patients and controls on distress. As expected, group differences were found in distress, such Copyright © 2015 John Wiley & Sons, Ltd.
Table 1. Participant demographic and clinical characteristics Characteristic Age in years, mean, SD* Gender, % female* Race, % White Ethnicity, % non-Hispanic Marital status, % married Years of education, %* 12 or less 13 to 16 17 or more Current employment, %* Working On leave Not employed Annual gross income, %* $100,000 Parenting involvement, % mean, SD Focus child age, mean, SD* Focus child sex, % female Relationship with child’s father/mother, % Romantic Friendly Hostile None Other Child referred for treatment, % yes Cancer diagnosis, % Multiple myeloma Acute myeloid leukemia Acute lymphocytic leukemia Chronic lymphocytic leukemia Chronic myeloid leukemia Non-Hodgkin’s lymphoma Hodgkin’s lymphoma Time since diagnosis, months, mean, SD Transplant type, % Autologous Allogeneic, matched related donor Allogeneic, matched unrelated donor Allogeneic, mismatched unrelated donor Cord blood Time since transplant, months, mean, SD Recurrence since transplant, % yes
Patients (N = 57)
Controls (N = 57)
45.56 (7.94) 49 79 77 86
40.12 (6.62) 68 91 86 86
19 63 18
2 49 49
28 7 65
93 0 7
53 25 19 66.75 (28.23) 12.54 (3.96) 51
14 60 16 68.58 (24.34) 9.46 (4.21) 47
74 18 4 4 2 2
83 7 0 4 7 5
25 21 5 4 2 26 17 52.81 (62.11)
– – – – – – – –
49 14 21 5 11 18.71 (11.98) 5
– – – – – – –
*p ≤ 0.05 based on t-tests for continuous variables and chi-square tests for categorical variables.
Table 2. Group differences in parenting self-efficacy, cancer-related parenting self-efficacy, general self-efficacy, and psychological distress Measure CaPSE SEPTI GSES BSI GSI
Patients M (SD)
Controls M (SD)
F
p
126.33 (16.68) 75.81 (24.61) 36.42 (5.40) 0.41 (0.36)
133.95 (9.93) 69.92 (19.49) 38.75 (3.86) 0.24 (0.26)
3.80 0.019 5.67 7.15
0.05 0.89 0.02 0.009
CaPSE, Cancer-Related Parenting Self-Efficacy Scale; SEPTI, Self-Efficacy Parenting Tasks Index; GSES, General Self-Efficacy Scale; BSI GSI, Brief Symptom Inventory Global Severity Index.
Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
Parenting self-efficacy and distress among parents with cancer
that the patients reported more distress than the controls (p = 0.009, Table 2).
Relationships between parenting self-efficacy and distress For the sample as a whole, PSE and cancer-related PSE were associated with distress in the expected direction (p-values ≤ 0.01, Table 3). As hypothesized, lower PSE was related to higher levels of distress. Additionally, it was found that lower GSE was associated with higher Table 3. Partial correlations of the Brief Symptom Inventory Global Severity Index with measures of parenting self-efficacy, cancer-related parenting self-efficacy, and general self-efficacy controlling for age and focus child age Measure CaPSE SEPTI GSES
Full sample (N = 114)
Patients (N = 57)
†
0.46 0.36† 0.32**
0.42** 0.47† 0.22
Controls (N = 57) 0.52† 0.25 0.36*
CaPSE, Cancer-Related Parenting Self-Efficacy Scale; SEPTI, Self-Efficacy Parenting Tasks Index; GSES, General Self-Efficacy Scale. *p ≤ 0.01; **p ≤ 0.001; † p ≤ 0.0001.
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levels of psychological distress (p ≤ 0.01). Additional analyses examined the relationship of GSE, PSE, and cancer-related PSE with distress by group. Among patients, significant relationships were found between PSE and cancer-related PSE, and psychological distress (p-values ≤ 0.05), but not between GSE and distress. Among controls, cancer-related PSE and GSE were related to distress (p-values ≤ 0.05), but PSE was not.
Mediational analyses Exploratory mediational analyses were conducted to determine whether the relationship between cancer status (patients versus controls) and psychological distress was mediated by cancer-related PSE, PSE, or GSE. Because Baron and Kenny’s criteria [37] for mediation were used, only those measures of self-efficacy that were significantly related to both the predictor and the outcome could be considered as mediators. Therefore, the first model focused on cancer-related PSE, and the second model focused on GSE. In the first model, findings were consistent with the view that cancer-related PSE mediates the relationship between cancer status and psychological distress. As shown in Figure 1: (a) cancer status was related to cancer-related PSE (p ≤ 0.05), (b) cancer-related PSE was
Figure 1. Path diagram for the indirect effect of cancer status on distress through (a) parenting self-efficacy and (b) general self-efficacy Copyright © 2015 John Wiley & Sons, Ltd.
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related to distress (p ≤ 0.05), and (c) cancer status was related to distress (p ≤ 0.05). After controlling for cancerrelated PSE, the path between cancer status and distress, while still statistically significant (p ≤ 0.05), decreased in magnitude. The bootstrap estimate of the mediated effect was 0.161 (SE = 0.082, 95% CI [0.020, 0.355]), confirming the finding that cancer-related PSE has an indirect effect on distress. A second model, with GSE as the mediator, was examined in order to determine the extent to which mediation was specific to parenting aspects of self-efficacy or also extends to general perceptions of self-efficacy. Findings were consistent with the view that GSE mediates the relationship between cancer status and psychological distress. As shown in Figure 1b, (a) cancer status was related to GSE (p ≤ 0.05), (b) GSE was related to distress (p ≤ 0.01), and (c) cancer status was related to distress (p ≤ 0.05). After controlling for GSE, the path between cancer status and distress remained statistically significant (p ≤ 0.05) but decreased in magnitude. The bootstrap estimate of the mediated effect was 0.130 (SE = 0.072, 95% CI [0.032, 0.338]), confirming the finding that GSE has an indirect effect on distress. Because cancer-related PSE and GSE each demonstrated an indirect effect on distress, a multiple meditational model was conducted to determine if each mediator accounted for unique variance in the relationship between cancer status and distress. When both cancer-related PSE and GSE were entered simultaneously in the mediation model, the bootstrap estimate of the mediated effect for PSE was 0.164 (SE = 0.082, 95% CI [0.018, 0.345]) and for GSE was 0.126 (SE = 0.065, 95% CI [0.032, 0.301]). This is consistent with the view that each variable had an independent indirect effect on distress.
Discussion As hypothesized, parents with cancer reported more psychological distress than parents who do not have cancer, which corresponds to the medium effect size observed in this study (d = 0.54). This finding is consistent with that of studies demonstrating that parents with cancer report higher levels of distress as compared with general population norms [5–8], and compared with parents without cancer [9]. Additionally, as also hypothesized, parents with cancer reported lower levels of cancer-related PSE than their peers, which corresponds to the medium effect size observed in this study (d = 0.56). Contrary to the study’s hypothesis, no differences were detected on PSE, as measured by the SEPTI. One possible explanation for this finding is that the CaPSE was developed with cancer patients in mind, whereas the SEPTI was not. Consequently, it included items that asked about parenting tasks that might be particularly challenging for cancer patients given Copyright © 2015 John Wiley & Sons, Ltd.
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the physical limitations that often result from cancer treatment, especially a treatment as intense as HSCT. For example, the CaPSE asks parents to rate their confidence in their ability to ‘physically care for my child’. As can best be determined, this is the first study to examine PSE among parents with cancer. Findings are consistent with the view that the experience of being diagnosed with a form of cancer that required HSCT treatment interferes with parents’ confidence in their ability to engage in child-rearing. Finally, as hypothesized, cancer-related PSE and PSE were both related to psychological distress. This relationship was evident in both the patient and control groups for cancer-related PSE, but only in the patient group for PSE. These findings indicate that cancer-related PSE is related to distress, regardless of whether or not a parent has cancer. Furthermore, the finding is consistent with studies in other populations [19–23]. For example, a study of mothers at risk for depression found that lower levels of PSE were related to higher levels of depression [19]. Based on the pattern of results obtained, additional analyses were conducted to determine if cancer-related PSE mediated the relationship between cancer status and distress. At the same time, a mediational analysis was also conducted with a general measure of self-efficacy to determine the extent to which mediation is specific to parenting aspects of self-efficacy or, instead, simply reflects general perceptions of self-efficacy. Study findings showed that both cancer-related PSE and GSE demonstrated indirect effects on distress. Results also showed that, when examined simultaneously, cancer-related PSE and GSE each had an independent, indirect effect on distress. This pattern is interesting given that Bandura’s theoretical work on self-efficacy posits that GSE is not a useful construct and has limited predictive ability in terms of specific behaviors [39]. However, studies among cancer patients have shown that decreased GSE is related to worse anxiety, greater fear of disease progression, and poorer quality of life [40,41]. Together, this suggests that both cancerrelated PSE and GSE are potential targets for interventions seeking to alleviate distress among parents with cancer. The current study had a number of strengths. These included the use of a case–control design that compared parents with cancer with parents without cancer. To date, only one previous study of psychosocial adjustment among mothers with breast cancer has performed this [9]; however, the samples were limited to women with breast cancer and female controls, and the study only looked at psychosocial adjustment. In contrast, this study included both fathers and mothers, making its findings generalizable to parents of both genders. In addition, this study included patients who had undergone HSCT, a treatment more intense and with a poorer prognosis than, for example, treatment for early stage breast cancer and who, therefore, may be more prone to poorer psychosocial Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
Parenting self-efficacy and distress among parents with cancer
adjustment. Additionally, this study examined cancerrelated PSE as a potential mediator for the relationship between cancer status and distress. There were also, however, a number of limitations in the current study. First, it used a cross-sectional design. This limits the conclusions that can be drawn regarding a causal relationship between PSE and distress and does not rule out the possibility that distress mediated the relationship between cancer status and PSE or GSE. Second, owing to the homogeneity of the sample in regard to race and ethnicity, results may not generalize to more diverse populations of cancer patients. Third, all the patients included in this study underwent HSCT. Therefore, these results may not generalize to other populations of cancer patients. Fourth, the groups were not matched on relevant demographic characteristics. The difference between the average age of children of parents with cancer and that of parents without cancer suggests the children in the two samples were at different developmental stages in life. That is, on average, parents with cancer had middle school-aged children and parents without cancer had elementary-aged children. Although children’s ages were covaried for in multivariate analyses, this technique may not have adequately controlled for the different challenges faced by parents with children at these developmental stages. While analyses controlled for age and focus child age, a more rigorous approach would have been to match the control group to the comparison group on these demographic characteristics. Fifth, instead of using a validated measure of child psychological or behavioral problems, one item was used to assess whether or not the focus child had been referred for psychological or behavioral problems. Sixth, only 57 out of 255 eligible patients agreed to participate in the study. This relatively low participation rate raises concerns about the extent to which the patients enrolled adequately represents the target population. Seventh, the sample size (n = 114) was small. To address these issues, future research should use longitudinal research designs, recruit more heterogeneous samples of cancer patients; recruit more participants; match patients and controls on relevant demographic variables, such as parent and child age; and use a validated measure to assess for child psychological or behavioral problems. Findings from this study have a number of implications for future research. Future research should administer the
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CaPSE to a larger number of cancer patients to further examine its psychometric properties, including determining its factor structure. While this study did not measure parental concern, other studies have demonstrated relationships between this construct and poor psychosocial outcomes [42]. Future studies should examine parental concern in relation to PSE and distress and investigate the utility of using measures of parental concern and PSE as screening tools to identify parents with cancer at risk for distress. Findings from the current study have several implications for clinical practice. First, these findings suggest that oncologists and mental health professionals treating cancer patients should discuss parenting concerns with their patients prior to transplant. In particular, they should discuss the possibility that the disruptive nature of HSCT to parenting may lead to greater distress among patients with school-aged children. Second, this study has implications for helping these patients. Both PSE and GSE are potential targets for interventions aimed at decreasing distress among parents with cancer. Increasing patients’ confidence in their ability to carry out child-rearing tasks during transplant by adequately preparing patients, setting realistic expectations for parenting, and providing social support during transplant could lead to less distress. Consistent with this view, a pilot study examining the impact of a family intervention for mothers with breast cancer and their children found beneficial effects for both mothers and their children on psychosocial adjustment [43]. This family intervention included group and joint sessions for mothers and their children aimed at teaching relaxation techniques, learning coping and communication skills, and providing a forum for discussing fears regarding the mothers’ illness [43]. Additionally, intervention studies among other populations of parents, such as those who have children with behavioral problems, have shown that family interventions designed to promote positive parenting practices can increase PSE [16–18]. Accordingly, conducting research to empirically evaluate the efficacy of interventions aimed at improving PSE and GSE among parents with cancer should be prioritized.
Conflict of interest There are no conflicts of interests from any author.
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Supporting information Additional supporting information may be found in the online version of this article at the publisher’s web site.
Copyright © 2015 John Wiley & Sons, Ltd.
Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
Relationships between parenting self-efficacy and distress in parents who have school-aged children and have been treated with hematopoietic stem cell transplant or have no cancer history Julie M. Cessna1,2*, Joseph Pidala1 and Paul B. Jacobsen1 1 2
Moffitt Cancer Center, Tampa, FL, USA University of South Florida, Tampa, FL, USA
*Correspondence to: University of South Florida, 4202 East Fowler Avenue, PCD4118G, Tampa, FL 33620, USA. E-mail: [email protected]. edu
Received: 27 July 2014 Revised: 17 March 2015 Accepted: 14 April 2015
Abstract Objective: Studies demonstrate that parents with cancer experience distress and that parenting selfefficacy (PSE) is related to distress among parents without cancer. However, no study to date has examined the relationships between PSE and psychological distress among parents with cancer. This study sought to address this issue by comparing parents with cancer who had undergone hematopoietic stem cell transplantation (HSCT) to parents without cancer on measures of PSE and psychological distress. Methods: A sample of 57 patients diagnosed with cancer who had undergone HSCT and a control group of 57 parents with no history of cancer were recruited for participation in the study. Medical record reviews assessed clinical variables, and participants filled out self-report measures of demographics, PSE, general self-efficacy, and psychological distress. Results: As hypothesized, parents with cancer reported less PSE and more psychological distress than controls (all p-values ≤ 0.05). Furthermore, findings indicated that both PSE and general selfefficacy mediated the relationship between cancer status and psychological distress. Conclusions: Findings expand understanding of the potential sources of distress among parents with cancer who have been treated with HSCT and who have school-aged children. They also suggest that interventions aimed at reducing distress in these individuals should seek to target both parenting and general self-efficacy. Copyright © 2015 John Wiley & Sons, Ltd.
Background An estimated 14% of cancer survivors have minor children living in their household; this figure equates to 1.58 million people in the USA [1]. Despite the relatively large number of affected individuals, relatively little is known about the extent to which having cancer affects the parenting experience. Moreover, the possibility that concerns about the ability to parent could influence distress in parents with cancer has not been systematically evaluated. Parents with cancer may experience distress if they put their own needs before those of their children, or if they do not feel confident in their ability to meet the needs of their children. Qualitative studies show that many parents with cancer are concerned about their ability to communicate about their illness, struggle to maintain a normal routine at home, and report they lack energy to perform daily parenting activities [2–4]. Quantitative studies comparing parents with cancer with general population norms show that a high proportion of parents with cancer score above clinical cutoffs for anxiety, depression, and psychological distress [5–8]. One Copyright © 2015 John Wiley & Sons, Ltd.
limitation of these studies is that they compare cancer patients with norms for the general population instead of to a control group. Only one study to date has employed a more rigorous case–control design to address this issue, but it did not include fathers [9]. This study found that mothers with breast cancer reported worse psychosocial adjustment and greater psychological distress than mothers who did not have breast cancer [9]. A number of studies have examined sociodemographic and clinical correlates of psychological distress among parents with cancer [7,10], but only one study to date has investigated the link between psychosocial variables and distress among parents with cancer [5]. This study found that higher levels of perceived stress were related to increased depression and anxiety [5]. The current study seeks to expand knowledge of contributory psychosocial factors by examining the relationship between parenting self-efficacy (PSE) and distress among parents with cancer. Parenting self-efficacy can be defined as caregivers’ confidence in their ability to successfully raise their children [11]. This construct stems from Bandura’s work on
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personal efficacy and human agency, which theorizes that actions are influenced by perceptions about the ability to perform behaviors [12]. When applied to parenting, it can be theorized that caregivers who do not feel confident in their ability to parent may be less likely to engage in positive parenting behaviors and may tend to give up easily when challenges arise, such as coping with cancer. This situation, in turn, may reinforce perceptions of low self-efficacy. Research has demonstrated a robust relationship between PSE and positive parenting practices such as parental involvement, responsiveness, and limit-setting among parents from the general population [13–15]. Additionally, greater PSE has been associated with better child adjustment and fewer child behavioral problems [11,14]. Intervention studies also provide support for this relationship by demonstrating that PSE can be increased through family interventions designed to promote positive parenting practices, and that these increases are associated with more positive parenting behaviors and better child adjustment [16–18]. Although no studies to date have examined the relationship between PSE and psychological distress in parents with cancer, PSE has been associated with psychological distress in other populations. Cross-sectional and longitudinal studies have shown an inverse relationship between PSE and depression, such that lower levels of PSE are related to higher levels of depressive symptoms [19–23]. The focus of the current study was on parents with cancer who had undergone hematopoietic stem cell transplantation (HSCT) in the past 2–48 months. While survival rates after HSCT have increased owing to advances in care, patients often require extended hospitalization and time recovering from treatment, and many suffer from significant short-term and long-term treatment side effects, such as nausea, infections, graft-versus-host disease, pain, fatigue, and insomnia [24–30]. Consistent with this pattern, studies have demonstrated that HSCT negatively affects patients’ quality of life during treatment and for many years following treatment [31]. It was expected that HSCT would have been particularly distressing for parents with school-aged children because they may have experienced profound disruptions in family life surrounding the procedures and may be currently dealing with significant quality of life issues while also attempting to fulfill their parenting responsibilities. The current study had three aims. Aim 1 was to determine the relationship of cancer status with PSE, cancerrelated PSE, and psychological distress in parents with cancer. It was hypothesized that parents with cancer would report lower PSE, lower cancer-related PSE, and higher levels of distress than parents without cancer. Aim 2 was to determine the relationship between PSE, cancer-related PSE, and psychological distress. It was hypothesized that lower PSE and lower cancer-related PSE would be related to higher levels of distress. Aim 3 was to explore whether Copyright © 2015 John Wiley & Sons, Ltd.
PSE, cancer-related PSE, and/or general self-efficacy (GSE) mediates the relationship between cancer status and distress.
Methods Participants Eligibility criteria
Participants were parents who had been diagnosed with cancer and undergone HSCT and a control group of parents with no history of cancer. Participants in both the patient and control groups met the following eligibility criteria: (1) have at least one child between 5 and 18 years of age living in the household for whom they are involved in parenting, (2) able to read and speak English, (3) able to provide informed consent, and (4) 18 years of age or older. Additionally, participants in the patient group were required to have completed HSCT within the past 2– 48 months, and participants in the control group were required to have no history of cancer except non-melanoma skin cancer. This study was approved by the University of South Florida Institutional Review Board.
Procedure Patients
A list of patients who underwent HSCT in the past 2–48 months was obtained from the Moffitt Cancer Center Blood and Marrow Transplant Program. Patients were screened via medical record review to determine if they met eligibility criteria. Potential participants were approached during a follow-up visit in the clinic or by phone to have the study protocol explained. If eligible and interested, informed consent was obtained, or a form was given to the participant to take home to sign, along with a packet of selfreport measures to complete. Controls
Participants for the control group were recruited via community outreach. A flyer providing study information was posted in community settings and e-mailed to the staff of community organizations. Those who expressed interest in participating were contacted by phone to determine if they were eligible. Those who were eligible and verbally agreed were mailed a packet containing an informed consent form, a study questionnaire, and a postage-paid return envelope. All participants were asked to fill out the measures for one child within the age range of 5–18 years. If they had more than one child in that age range, they were asked to complete the measures for the child whose first name came first in alphabetic order. All participants were paid $20 upon study completion. Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
Parenting self-efficacy and distress among parents with cancer
Measures Demographic characteristics
The following demographic characteristics were assessed using a standardized self-report form: age, gender, race, ethnicity, marital status, income, employment status, and education. In addition, each child’s age and sex were assessed. Clinical characteristics
The following clinical characteristics were assessed for the patient group via medical chart review: type of cancer, date of diagnosis, date of HSCT, type of HSCT, and current disease status. Parenting involvement
Used previously in a study examining parental involvement and family adjustment [32], parenting involvement in childcare was assessed by asking participants ‘What percentage of all the child care and things that have to be done for the children in your household do you do?’ Responses could range from 0% to 100%. Child referral for psychological or behavioral problems
Child referral for psychological or behavioral problems was assessed by asking participants ‘Has this child been referred to or seen by a mental health professional, such as a licensed psychologist or psychiatrist, in the past six months?’ General self-efficacy
The Generalized Self-Efficacy Scale (GSES) was used to assess perceptions about one’s ability to cope with difficult situations. The GSES is composed of ten items rated on a 4-point response scale, with a range from 1 = not at all true to 4 = somewhat true [33]. This measure demonstrated adequate internal consistency reliability (α = 0.85). Parenting self-efficacy
Parenting self-efficacy was assessed using the 36-item Self-Efficacy Parenting Tasks Index (SEPTI). The SEPTI measures PSE in five domains: achievement, recreation, discipline, nurturance, and health [34,35]. Items are rated on a 6-point scale ranging from 1 = strongly disagree to 6 = strongly agree. This measure demonstrated adequate internal consistency reliability (α = 0.91). Cancer-related parenting self-efficacy
A new measure, the 24-item Cancer-Related Parenting Self-Efficacy Scale (CaPSE), was created to assess PSE for tasks that were thought to be particularly relevant to cancer patients. Items are rated on a 6-point scale ranging from 1 = strongly disagree to 6 = strongly agree for how Copyright © 2015 John Wiley & Sons, Ltd.
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confident parents feel about their ability to perform certain tasks. Initial development involved creating an item pool by adapting questions from other validated measures of PSE, and adding new items designed to assess self-efficacy for parenting tasks that might be particularly difficult for parents who may have certain limitations due to cancer and its treatment (e.g., ‘I am confident in my ability to physically care for my child’). Items were reviewed by five experts in psycho-oncology for face validity. These items were then administered to five parents with cancer, who were then debriefed using cognitive interviewing in order to determine question comprehension and relevance. Based on patient feedback, items that were deemed redundant were eliminated, and those deemed unclear were re-worded. The final set of 24 CaPSE items (Supporting Information) demonstrated adequate internal consistency reliability (α = 0.94). Additionally, the CaPSE demonstrated convergent validity with another measure of PSE, the SEPTI (r = 0.67, p < 0.001). Psychological distress
General psychological distress was assessed using the 53item Brief Symptom Inventory [36]. Items are rated on a 5-point scale ranging from 0 = not at all to 4 = extremely. For the purpose of this study, the Brief Symptom Inventory Global Severity Index was used to indicate the intensity of perceived distress. The Global Severity Index demonstrated adequate internal consistency reliability (α = 0.93).
Statistical analyses Before conducting the main analyses, independent samples t-tests or chi-square tests were performed to determine whether or not the groups differed on demographic variables. If the groups differed significantly on a variable (p ≤ 0.05) and the variable was significantly related to PSE or distress, then it was included as a covariate in subsequent analyses. In order to determine the relationship of cancer status with PSE and distress, analysis of covariance was conducted to compare mean levels of PSE between patients and controls on PSE, cancer-related PSE, and psychological distress after controlling for relevant covariates. In order to determine the relationship between PSE and distress, a partial correlation was calculated to determine if there was a significant association between distress and PSE after controlling for relevant covariates. Mediational analyses were performed using Baron and Kenny’s [37] criteria and bootstrapping to explore whether PSE or GSE mediates the relationship of cancer status with psychological distress. Path coefficients and bootstrap confidence intervals (CIs) for effect were estimated using an SPSS macro created by Preacher and Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
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Hayes to determine the significance of the potential mediators [38]. The accrual target was 120 (60 participants per group), which yielded 80% power to detect a medium between group effect size of 0.5 with an α = 0.05 (two tailed).
Results Participant characteristics One thousand four hundred and twenty-four patients were screened for this study; of these, 1169 were ineligible based on medical record reviews. The remaining 255 participants were approached for participation. Of these, 114 were unable to be contacted by phone, 46 refused to participate, and 95 agreed to participate (67% of those able to be contacted). Of those who agreed to participate, 36 never completed the study measures and could not be reached again, and two were found to be ineligible after participating. Thus, analyses were conducted on 57 patients with evaluable data. Because control participants were self-nominated, the participation rate could not be calculated for this group. Fifty-seven controls provided evaluable data. Participant demographic and clinical characteristics are shown in Table 1. The groups differed on age, gender, years of education, current employment, annual gross income, and focus child age (p-values ≤ 0.05), such that patients were older, more likely to be male, less educated, less likely to be employed, had a lower income, and had a focus child who was older than controls (Table 1). Among these variables, only participant age and focus child age were correlated (p-values ≤ 0.05) with PSE (rs = 0.27) or cancer-related PSE (rs = 0.30 and 0.19, respectively). Therefore, participant and focus child age were included as covariates in subsequent analyses. Previous research in the general population indicates that mothers report greater PSE than fathers [35]. However, in this sample, gender was not significantly related to PSE or cancer-related PSE (all p-values > 0.18).
Comparison of patients and controls on parenting self-efficacy and psychological distress To address the first hypothesis, comparisons were made using analysis of covariance between patients and controls on measures of PSE and cancer-related PSE. Only cancerrelated PSE, demonstrated a group difference (p = 0.05), such that patients reported less cancer-related PSE than controls (Table 2). Although no hypothesis was offered regarding GSE, an analysis was conducted, which indicated that patients reported less GSE than controls (p = 0.02, Table 2). To address the second hypothesis, comparisons were made between patients and controls on distress. As expected, group differences were found in distress, such Copyright © 2015 John Wiley & Sons, Ltd.
Table 1. Participant demographic and clinical characteristics Characteristic Age in years, mean, SD* Gender, % female* Race, % White Ethnicity, % non-Hispanic Marital status, % married Years of education, %* 12 or less 13 to 16 17 or more Current employment, %* Working On leave Not employed Annual gross income, %* $100,000 Parenting involvement, % mean, SD Focus child age, mean, SD* Focus child sex, % female Relationship with child’s father/mother, % Romantic Friendly Hostile None Other Child referred for treatment, % yes Cancer diagnosis, % Multiple myeloma Acute myeloid leukemia Acute lymphocytic leukemia Chronic lymphocytic leukemia Chronic myeloid leukemia Non-Hodgkin’s lymphoma Hodgkin’s lymphoma Time since diagnosis, months, mean, SD Transplant type, % Autologous Allogeneic, matched related donor Allogeneic, matched unrelated donor Allogeneic, mismatched unrelated donor Cord blood Time since transplant, months, mean, SD Recurrence since transplant, % yes
Patients (N = 57)
Controls (N = 57)
45.56 (7.94) 49 79 77 86
40.12 (6.62) 68 91 86 86
19 63 18
2 49 49
28 7 65
93 0 7
53 25 19 66.75 (28.23) 12.54 (3.96) 51
14 60 16 68.58 (24.34) 9.46 (4.21) 47
74 18 4 4 2 2
83 7 0 4 7 5
25 21 5 4 2 26 17 52.81 (62.11)
– – – – – – – –
49 14 21 5 11 18.71 (11.98) 5
– – – – – – –
*p ≤ 0.05 based on t-tests for continuous variables and chi-square tests for categorical variables.
Table 2. Group differences in parenting self-efficacy, cancer-related parenting self-efficacy, general self-efficacy, and psychological distress Measure CaPSE SEPTI GSES BSI GSI
Patients M (SD)
Controls M (SD)
F
p
126.33 (16.68) 75.81 (24.61) 36.42 (5.40) 0.41 (0.36)
133.95 (9.93) 69.92 (19.49) 38.75 (3.86) 0.24 (0.26)
3.80 0.019 5.67 7.15
0.05 0.89 0.02 0.009
CaPSE, Cancer-Related Parenting Self-Efficacy Scale; SEPTI, Self-Efficacy Parenting Tasks Index; GSES, General Self-Efficacy Scale; BSI GSI, Brief Symptom Inventory Global Severity Index.
Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
Parenting self-efficacy and distress among parents with cancer
that the patients reported more distress than the controls (p = 0.009, Table 2).
Relationships between parenting self-efficacy and distress For the sample as a whole, PSE and cancer-related PSE were associated with distress in the expected direction (p-values ≤ 0.01, Table 3). As hypothesized, lower PSE was related to higher levels of distress. Additionally, it was found that lower GSE was associated with higher Table 3. Partial correlations of the Brief Symptom Inventory Global Severity Index with measures of parenting self-efficacy, cancer-related parenting self-efficacy, and general self-efficacy controlling for age and focus child age Measure CaPSE SEPTI GSES
Full sample (N = 114)
Patients (N = 57)
†
0.46 0.36† 0.32**
0.42** 0.47† 0.22
Controls (N = 57) 0.52† 0.25 0.36*
CaPSE, Cancer-Related Parenting Self-Efficacy Scale; SEPTI, Self-Efficacy Parenting Tasks Index; GSES, General Self-Efficacy Scale. *p ≤ 0.01; **p ≤ 0.001; † p ≤ 0.0001.
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levels of psychological distress (p ≤ 0.01). Additional analyses examined the relationship of GSE, PSE, and cancer-related PSE with distress by group. Among patients, significant relationships were found between PSE and cancer-related PSE, and psychological distress (p-values ≤ 0.05), but not between GSE and distress. Among controls, cancer-related PSE and GSE were related to distress (p-values ≤ 0.05), but PSE was not.
Mediational analyses Exploratory mediational analyses were conducted to determine whether the relationship between cancer status (patients versus controls) and psychological distress was mediated by cancer-related PSE, PSE, or GSE. Because Baron and Kenny’s criteria [37] for mediation were used, only those measures of self-efficacy that were significantly related to both the predictor and the outcome could be considered as mediators. Therefore, the first model focused on cancer-related PSE, and the second model focused on GSE. In the first model, findings were consistent with the view that cancer-related PSE mediates the relationship between cancer status and psychological distress. As shown in Figure 1: (a) cancer status was related to cancer-related PSE (p ≤ 0.05), (b) cancer-related PSE was
Figure 1. Path diagram for the indirect effect of cancer status on distress through (a) parenting self-efficacy and (b) general self-efficacy Copyright © 2015 John Wiley & Sons, Ltd.
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related to distress (p ≤ 0.05), and (c) cancer status was related to distress (p ≤ 0.05). After controlling for cancerrelated PSE, the path between cancer status and distress, while still statistically significant (p ≤ 0.05), decreased in magnitude. The bootstrap estimate of the mediated effect was 0.161 (SE = 0.082, 95% CI [0.020, 0.355]), confirming the finding that cancer-related PSE has an indirect effect on distress. A second model, with GSE as the mediator, was examined in order to determine the extent to which mediation was specific to parenting aspects of self-efficacy or also extends to general perceptions of self-efficacy. Findings were consistent with the view that GSE mediates the relationship between cancer status and psychological distress. As shown in Figure 1b, (a) cancer status was related to GSE (p ≤ 0.05), (b) GSE was related to distress (p ≤ 0.01), and (c) cancer status was related to distress (p ≤ 0.05). After controlling for GSE, the path between cancer status and distress remained statistically significant (p ≤ 0.05) but decreased in magnitude. The bootstrap estimate of the mediated effect was 0.130 (SE = 0.072, 95% CI [0.032, 0.338]), confirming the finding that GSE has an indirect effect on distress. Because cancer-related PSE and GSE each demonstrated an indirect effect on distress, a multiple meditational model was conducted to determine if each mediator accounted for unique variance in the relationship between cancer status and distress. When both cancer-related PSE and GSE were entered simultaneously in the mediation model, the bootstrap estimate of the mediated effect for PSE was 0.164 (SE = 0.082, 95% CI [0.018, 0.345]) and for GSE was 0.126 (SE = 0.065, 95% CI [0.032, 0.301]). This is consistent with the view that each variable had an independent indirect effect on distress.
Discussion As hypothesized, parents with cancer reported more psychological distress than parents who do not have cancer, which corresponds to the medium effect size observed in this study (d = 0.54). This finding is consistent with that of studies demonstrating that parents with cancer report higher levels of distress as compared with general population norms [5–8], and compared with parents without cancer [9]. Additionally, as also hypothesized, parents with cancer reported lower levels of cancer-related PSE than their peers, which corresponds to the medium effect size observed in this study (d = 0.56). Contrary to the study’s hypothesis, no differences were detected on PSE, as measured by the SEPTI. One possible explanation for this finding is that the CaPSE was developed with cancer patients in mind, whereas the SEPTI was not. Consequently, it included items that asked about parenting tasks that might be particularly challenging for cancer patients given Copyright © 2015 John Wiley & Sons, Ltd.
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the physical limitations that often result from cancer treatment, especially a treatment as intense as HSCT. For example, the CaPSE asks parents to rate their confidence in their ability to ‘physically care for my child’. As can best be determined, this is the first study to examine PSE among parents with cancer. Findings are consistent with the view that the experience of being diagnosed with a form of cancer that required HSCT treatment interferes with parents’ confidence in their ability to engage in child-rearing. Finally, as hypothesized, cancer-related PSE and PSE were both related to psychological distress. This relationship was evident in both the patient and control groups for cancer-related PSE, but only in the patient group for PSE. These findings indicate that cancer-related PSE is related to distress, regardless of whether or not a parent has cancer. Furthermore, the finding is consistent with studies in other populations [19–23]. For example, a study of mothers at risk for depression found that lower levels of PSE were related to higher levels of depression [19]. Based on the pattern of results obtained, additional analyses were conducted to determine if cancer-related PSE mediated the relationship between cancer status and distress. At the same time, a mediational analysis was also conducted with a general measure of self-efficacy to determine the extent to which mediation is specific to parenting aspects of self-efficacy or, instead, simply reflects general perceptions of self-efficacy. Study findings showed that both cancer-related PSE and GSE demonstrated indirect effects on distress. Results also showed that, when examined simultaneously, cancer-related PSE and GSE each had an independent, indirect effect on distress. This pattern is interesting given that Bandura’s theoretical work on self-efficacy posits that GSE is not a useful construct and has limited predictive ability in terms of specific behaviors [39]. However, studies among cancer patients have shown that decreased GSE is related to worse anxiety, greater fear of disease progression, and poorer quality of life [40,41]. Together, this suggests that both cancerrelated PSE and GSE are potential targets for interventions seeking to alleviate distress among parents with cancer. The current study had a number of strengths. These included the use of a case–control design that compared parents with cancer with parents without cancer. To date, only one previous study of psychosocial adjustment among mothers with breast cancer has performed this [9]; however, the samples were limited to women with breast cancer and female controls, and the study only looked at psychosocial adjustment. In contrast, this study included both fathers and mothers, making its findings generalizable to parents of both genders. In addition, this study included patients who had undergone HSCT, a treatment more intense and with a poorer prognosis than, for example, treatment for early stage breast cancer and who, therefore, may be more prone to poorer psychosocial Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
Parenting self-efficacy and distress among parents with cancer
adjustment. Additionally, this study examined cancerrelated PSE as a potential mediator for the relationship between cancer status and distress. There were also, however, a number of limitations in the current study. First, it used a cross-sectional design. This limits the conclusions that can be drawn regarding a causal relationship between PSE and distress and does not rule out the possibility that distress mediated the relationship between cancer status and PSE or GSE. Second, owing to the homogeneity of the sample in regard to race and ethnicity, results may not generalize to more diverse populations of cancer patients. Third, all the patients included in this study underwent HSCT. Therefore, these results may not generalize to other populations of cancer patients. Fourth, the groups were not matched on relevant demographic characteristics. The difference between the average age of children of parents with cancer and that of parents without cancer suggests the children in the two samples were at different developmental stages in life. That is, on average, parents with cancer had middle school-aged children and parents without cancer had elementary-aged children. Although children’s ages were covaried for in multivariate analyses, this technique may not have adequately controlled for the different challenges faced by parents with children at these developmental stages. While analyses controlled for age and focus child age, a more rigorous approach would have been to match the control group to the comparison group on these demographic characteristics. Fifth, instead of using a validated measure of child psychological or behavioral problems, one item was used to assess whether or not the focus child had been referred for psychological or behavioral problems. Sixth, only 57 out of 255 eligible patients agreed to participate in the study. This relatively low participation rate raises concerns about the extent to which the patients enrolled adequately represents the target population. Seventh, the sample size (n = 114) was small. To address these issues, future research should use longitudinal research designs, recruit more heterogeneous samples of cancer patients; recruit more participants; match patients and controls on relevant demographic variables, such as parent and child age; and use a validated measure to assess for child psychological or behavioral problems. Findings from this study have a number of implications for future research. Future research should administer the
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CaPSE to a larger number of cancer patients to further examine its psychometric properties, including determining its factor structure. While this study did not measure parental concern, other studies have demonstrated relationships between this construct and poor psychosocial outcomes [42]. Future studies should examine parental concern in relation to PSE and distress and investigate the utility of using measures of parental concern and PSE as screening tools to identify parents with cancer at risk for distress. Findings from the current study have several implications for clinical practice. First, these findings suggest that oncologists and mental health professionals treating cancer patients should discuss parenting concerns with their patients prior to transplant. In particular, they should discuss the possibility that the disruptive nature of HSCT to parenting may lead to greater distress among patients with school-aged children. Second, this study has implications for helping these patients. Both PSE and GSE are potential targets for interventions aimed at decreasing distress among parents with cancer. Increasing patients’ confidence in their ability to carry out child-rearing tasks during transplant by adequately preparing patients, setting realistic expectations for parenting, and providing social support during transplant could lead to less distress. Consistent with this view, a pilot study examining the impact of a family intervention for mothers with breast cancer and their children found beneficial effects for both mothers and their children on psychosocial adjustment [43]. This family intervention included group and joint sessions for mothers and their children aimed at teaching relaxation techniques, learning coping and communication skills, and providing a forum for discussing fears regarding the mothers’ illness [43]. Additionally, intervention studies among other populations of parents, such as those who have children with behavioral problems, have shown that family interventions designed to promote positive parenting practices can increase PSE [16–18]. Accordingly, conducting research to empirically evaluate the efficacy of interventions aimed at improving PSE and GSE among parents with cancer should be prioritized.
Conflict of interest There are no conflicts of interests from any author.
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Psycho-Oncology 25: 339–346 (2016) DOI: 10.1002/pon
