Abstract
Background
Children whose parents have cancer are at-risk for psychosocial difficulties, however, the mechanisms are not well understood. This cross-sectional study sought support for a model connecting parental cancer to child distress through its impact on parent self-efficacy beliefs and parenting behaviors, by examining relationships among parental illness, quality of life/parent functioning, parent and co-parent efficacy beliefs, and concerns about children's emotional distress.
Methods
194 adult oncology outpatients, with children 18 years of age and younger completed questionnaires assessing health-related quality of life (FACT-G), depression and anxiety symptoms (HADS), overall distress (Distress Thermometer), and parent and co-parent efficacy beliefs and parenting concerns (PCQ).
Results
Parent and co-parent efficacy scores declined significantly after diagnosis. This decline correlated with having more visits to a medical clinic, treatment with IV chemotherapy in the past month, poorer health-related quality of life, and more depression and distress. Parents experiencing the most concern about the impact of mood, physical limitations and changes in routines on their children, experienced the biggest declines in their own sense of efficacy as a parent, and in their belief in their co-parent's efficacy. Finally, declines in parenting efficacy beliefs correlated to parent concerns about children's emotional distress about aspects of the parent's illness.
Conclusions
The study highlights the importance of identifying and addressing parenting concerns to alleviate patient distress, and may help guide future intervention efforts.
Keywords: Parenting, self-efficacy, family relations, quality of life, depression, cancer
BACKGROUND
Cancer affects approximately 1.5 million adults with dependent children in the United States.1 The illness and its treatment affect all areas of family life, and have the potential to influence child functioning over time. Children whose parents have cancer are at higher risk for psychosocial difficulties such as aggression or symptoms of depression or anxiety,2 and child and family outcomes are further worsened by co-morbid parental cancer and depression.3 However, the mechanisms for this increased risk for children are not well understood.
For adults who are living with minor children, parenting is a primary focus of everyday activity. Parental cancer and treatment-related symptoms such as changes in appearance, mobility, memory, mood or energy levels can affect everyday functioning and the caregiving of children.4, 5 The emotional aspects of treatment are an additional stress and may contribute to changes in a parent's anxiety level, mood and coping that also have the potential to affect interactions with children.3,6 Prior research found that many parents report significant concern that illness-related changes in mood, cognition, physical functioning and family routines are affecting their children.7 This was particularly true for parents who experienced poorer physical, functional, emotional and social quality of life. While parenting behavior was not directly observed, the findings suggest that parents themselves believe that their children are affected by cancer-related parenting changes, and this is particularly true for parents whose quality of life is most negatively affected by illness. This previous study also found that parents with the highest illness-related effects (overall distress, depression, anxiety, worse quality of life in multiple arenas) were most concerned about emotional distress in their children, complementing research linking children's emotional functioning with the ill parent's physical and emotional functioning. 8-11 Thus the relationship between parental cancer and increased child distress might be at least partly explained through cancer's impact on symptoms that can affect parenting behaviors and interactions between parents and children.
Parenting dependent children also informs sense of identity in adults. Parenting self-efficacy beliefs, or a parent's expectation about their capacity to parent effectively, have been associated with child and parent functioning in families with and without an ill parent .12, 13 Independent of parenting quality or skill, efficacy beliefs may motivate parents to engage in a variety of ways with children, as well as influence a parent's self-evaluation of their performance in the parenting role.
In two parent families, co-parents are also known to experience significant stress related to their role as caregivers to the ill parent,8,14 and to meeting the sometimes competing needs of children and the ill spouse.15 Their distress, coupled with additional pressures on their time and availability to children, may contribute to children's distress as relationships with not one, but both parents, are impacted. Lewis and Darby9 showed that adolescents with a poor relationship with both an ill mother and non-ill father were more anxious than those reporting a positive relationship with one or both parents, providing evidence that co-parents can either compensate for, or amplify, the impact on children of an ill parent's worsened functioning. Parenting efficacy beliefs are also impacted by the spousal caregiving role, as healthy parents caring for a terminally ill co-parent reported less confidence in their ability to meet children's needs than parents without an ill spouse.16 Parenting efficacy in partners of cancer patients represents an aspect of family functioning that has not yet been well studied.
Prior research supports a model connecting parental illness to child distress through its impact on parenting behaviors 4,11,13,17 and preliminarily, through parent self efficacy beliefs.13,17 The current exploratory study sought additional support for this model by examining the relationships among parental illness, quality of life/parent functioning, parent and co-parent efficacy beliefs, and parent concerns about children's emotional distress in an outpatient population of men and women with a range of cancer diagnoses.
METHODS
Participants
Participants included 194 self-selected adult oncology outpatients, receiving treatment at two affiliates of an urban Comprehensive Cancer Center, with children 18 years of age and younger. Participants anonymously completed a packet of self-report questionnaires and returned them during clinic visits between October 2008 and August 2009. A cover letter described the study; returning the survey indicated informed consent. The study was approved by the IRBs at both participating institutions.
Measures
Patients provided information about socio-demographics and illness characteristics, as well as the following:
Parent health-related quality of life was assessed by the Functional Assessment of Cancer Therapy-General (FACT-G), a 27-item Likert-type questionnaire with items addressing physical, social/family, emotional and functional well-being during the previous week.18, 19
Parent depression and anxiety were assessed with the Hospital Anxiety and Depression Scale (HADS). This 14-item measure screens for symptoms of anxiety and depression in the previous week, and has been well tested in cancer populations. Subscale scores range from 0 - 21; a score higher than 7 on either HADS subscale is considered to be clinically significant.20, 21
Parent overall distress was assessed using the single-item Distress Thermometer 22, 23 on which patients chose a number from 0-10 to indicate their level of distress in the past week.
Parent and co-parent efficacy beliefs: Four items rated on a 5-point Likert-type scale assessed patient's perceptions of their ability to meet children's needs prior to being diagnosed with cancer, and since diagnosis, and the co-parent's ability to meet children's needs prior to and since the patient's diagnosis. Higher scores indicated better perceived ability to meet needs.
Parenting concerns: Patients completed the Parenting Concerns Questionnaire (PCQ)7 and rated how concerned they felt in the past month about a variety of child related issues on a 5-point Likert-type scale. A total score averaging all 15 items, and three subscale scores including 5 items each, were computed:
Practical Impact of the illness on children assessed concerns about illness changing children's routines and the time spent together, and the parent's mood, physical limitations and cognitive changes affecting children.
Emotional Impact of the illness assessed concerns about children's level of emotional distress and potential need for mental health care.
Concerns about co-parent reflected concerns about the co-parent's ability to provide practical and emotional support to the patient and to the children.
On all PCQ scales, higher scores indicate more parental concern. Cronbach's alpha for the 15-item PCQ was .83, for Practical Impact was .79, for Emotional Impact was .79, and for Concerns about Co-parent was .85. Full details on the development and validation of the PCQ, as well as results from factor analyses of items, are described elsewhere.7
Statistical methods
The SPSS software package, version 17.0, was used for all statistical analyses. Subscale scores represent the scale item means; if more than 20% of scale items were missing, the subscale score was entered as missing. Descriptive statistics estimated the frequencies, means, and standard deviations of the study variables. Differences between groups in parenting concerns and other continuous variables were assessed with the use of independent-samples Student's t-tests, after Levene's test for equality of variances clarified the appropriate t-value.
RESULTS
194 participants responded to the survey, and 189 completed all 15 PCQ items. Of patients who completed the questionnaire packet, 73% were female, 95% were Caucasian, 2% were Hispanic, 89% were living with a spouse or partner, and 86% had at least an Associate's degree. Participants ranged in age from 26-65 years with median age of 46. 19% of respondents indicated that they do not live with a child's other parent, but only 10% of the sample was not currently living with any partner. Time since diagnosis ranged from 2 – 237 months with a median of 14 months. Illness characteristics of respondents are described in Table 1; additional demographic and illness characteristics, along with complete descriptive statistics for measures of distress, have been reported elsewhere.7
Table 1.
Illness and treatment characteristics
| Variable | N (Percent) |
|---|---|
| Cancer type: | |
| Breast | 66 (34) |
| Leukemia/lymphoma | 33 (17) |
| GI | 29 (15) |
| Gynecological | 15 (8) |
| Other | 51 (26) |
| Metastatic | 82 (42) |
| Recurrence | 65 (34) |
| Tx in past month: | |
| IV chemotherapy | 100 (52) |
| Radiation | 20 (10) |
| Surgery | 19 (10) |
| Tx in past 6 months: | |
| IV chemotherapy | 124 (64) |
| Radiation | 33 (17) |
| Surgery | 61 (31) |
Parenting efficacy beliefs after diagnosis
Patients’ responses to questions about how well they believed they were able to meet children's needs before and after the cancer diagnosis, are summarized in Table 2. 60% felt they met children's needs “extremely well” before diagnosis, but only 11% after diagnosis. 42% of patients felt that co-parents met children's needs extremely well prior to their diagnosis, vs. 26% after diagnosis. Mean parenting efficacy scores were significantly higher before than after diagnosis (t(192)=16.89, p<.0001), as were patient perceptions of co-parent efficacy (t(188)=5.23, p<.0001). Although both parent and co-parent scores dropped significantly after diagnosis, the effect size for the parent's change was much larger (Cohen's d scores = 1.48 and .26, respectively).
Table 2.
Perceptions of parenting efficacy pre- and post-diagnosis
| M (SD) | Not well at all or not that well (1-2) % | Well enough (3) % | Very or extremely well (4-5) % | |
|---|---|---|---|---|
| How well were you able to meet your children's needs before your diagnosis? | 4.53 (.63) | 1 | 6 | 94a |
| How well are you able to meet their needs since your diagnosis? | 3.4 (.88) | 15 | 42 | 43 |
| How well was the child's other parent able to meet children's needs before your diagnosis? | 3.89 (1.20) | 10 | 16 | 74 |
| How well is the child's other parent able to meet their needs since your diagnosis? | 3.57 (1.28) | 13 | 27 | 61 a |
1=not well at all, 2=not that well, 3=well enough, 4=very well, 5=extremely well
Row sums to >100% due to rounding of decimals; n's =183-194
Difference scores were calculated between parenting and co-parenting efficacy beliefs before vs. after the cancer diagnosis, to create “parenting efficacy change” scores. A negative score indicated a perceived decline in ability to meet children's needs after diagnosis with cancer. The mean Parenting Efficacy Change score was −1.13 (SD=.93) and Co-Parenting Efficacy change was −.32 (SD=.83). There was no difference in mean Parenting Efficacy Changes score between mothers and fathers (Table 3). However, fathers perceived a bigger decline in their partners’ ability to meet children's needs after a cancer diagnosis than did mothers.
Table 3.
Perceived parenting and co-parenting efficacy changes in mothers vs. fathers
| Mothers | Fathers | ||||
|---|---|---|---|---|---|
| M(SD) | N | M(SD) | N | t(df) | |
| Parenting efficacy change | −1.11 (.90) | 140 | −1.17 (1.00) | 52 | .44 (190) |
| Co-parent efficacy change | −0.23 (.85) | 140 | −.58 (.74) | 48 | 2.57 (186)*a |
p<.01,
equal variances not assumed
More frequent visits to a medical clinic in the past month correlated with a bigger decline in both parenting and co-parenting efficacy (r's = −.28 and −.25, p's=.001). T-tests indicated that patients who had IV chemotherapy treatment in the past month also had bigger declines in reported ability to meet children's needs, as did patients who had radiation at the trend level. Having surgery in the past month or metastatic or recurrent disease, was unrelated to parenting efficacy change scores (Table 4).
Table 4.
Parenting efficacy change scores related to treatment and illness characteristics.
| Parenting efficacy change score | |||
|---|---|---|---|
| Mean (SD) | n | t(df) | |
| IV chemo in past month | 2.04 (191)* | ||
| No | −.99 (.97) | 93 | |
| Yes | −1.26 (.87) | 100 | |
| XRT in past month | 1.90 (191) T | ||
| No | −1.09 (.95) | 173 | |
| Yes | −1.5 (.69) | 20 | |
| Surgery in past month | −.64 (191) | ||
| No | −1.14 (.93) | 174 | |
| Yes | −1.00 (.94) | 19 | |
| Metastatic disease | .50 (175) | ||
| No | −1.05 (.96) | 95 | |
| Yes | −1.12 (.87) | 82 | |
| Cancer recurrence | .71 (172) | ||
| No | −1.06 (.94) | 109 | |
| Yes | −1.17 (.94) | 65 | |
*p<.05,
p<.10
Parenting efficacy beliefs and health-related and emotional functioning
Partial correlations tested relationships between measures of parent functioning and distress, and changes in parent efficacy beliefs, after controlling for the perception of pre-diagnosis ability to meet children's needs. This allows an assessment of whether the parent's current daily functioning predicts the changes in parenting efficacy beliefs, independent of pre-diagnosis parenting efficacy. Poorer health-related quality of life and more depression and distress correlated significantly to declines in parenting efficacy beliefs, with moderate to large effect sizes (Table 5). Declines in co-parent efficacy were also correlated with the ill parent's depression, anxiety, distress and poorer quality of life, with the exception of physical well-being.
Table 5.
Partial correlations between parenting efficacy change scores and indicators of distress.
| Parenting efficacy change, controlling for baseline (n=129) | Co-parenting efficacy change, controlling for baseline (n=127) | |
|---|---|---|
| FACT-G total score | .54*** | .32*** |
| Physical well-being | .46*** | .19 |
| Social well-being | .33*** | .25** |
| Emotional well-being | .28** | .27** |
| Functional well-being | .54*** | .30** |
| HADS Depression | −.40*** | −.30*** |
| HADS Anxiety | −.15 | −.21* |
| Distress Thermometer | −.26** | −.22* |
| PCQ score | −.46*** | −.30*** |
| Practical Impact scale | .57*** | −.25** |
| Emotional Impact scale | −.41*** | −.13 |
| Co-parent Concerns scale | −.11 | −.30** |
*p<.05, **p<.01, ***p<.001
Parenting efficacy beliefs and practical impact of illness on children
A significant correlation was found between change in parent and co-parent efficacy beliefs, and the parent's rating of the Practical Impact of the illness on children (Table 5). Parents with the most concern about the impact of their mood, physical limitations and changes in routines on their children, experienced the biggest declines in their own sense of efficacy as a parent, as well as in their belief in their co-parent's efficacy. Concerns about the co-parent's ability to provide practical and emotional support to family members were not correlated with changes in the patient's own parenting efficacy beliefs, but were significantly correlated with changes in the patient's rating of the co-parent's efficacy.
Parenting efficacy beliefs and emotional impact of illness on children
A significant correlation was found between change in parent efficacy beliefs, and the parent's rating of the Emotional Impact of the illness on children (Table 5). Parents with the biggest declines in parenting efficacy beliefs reported the most concern about having children who are emotionally distressed by aspects of the parent's illness.
CONCLUSIONS
This study used the recently developed Parenting Concerns Questionnaire (PCQ) to seek support for a model suggesting that the association between parental cancer and children's distress may be explained partly by changes in parenting behavior and parenting efficacy beliefs resulting from the range of physical, cognitive and emotional changes experienced by parents undergoing cancer treatment.
In this outpatient sample, a sizable group of participants reported significant declines in their ability to meet children's needs following a cancer diagnosis, i.e., parenting efficacy. Both mothers and fathers reported that, after a cancer diagnosis, they were unable to meet their children's needs as well as before the illness. For some, this was not a subtle change, as they reported that before diagnosis, they had met children's needs “very” or “extremely well,” whereas after diagnosis, children's needs were met “not that well” or “not well at all.” Parents described the same decline, to a smaller degree, in their non-ill co-parents, perhaps due to a shift in time and resources from children to the ill parent. Fathers with cancer perceived bigger changes in partners’ parenting than did mothers. While further research is required to clarify this finding, it is possible that mothers who had primary responsibility for childcare prior to the partner's illness, had to take on a range of new responsibilities that interfered with usual routines with children.
Attending more frequent medical appointments, and receiving IV chemotherapy in the past month both related to declines in parenting efficacy beliefs, as did receiving radiation treatment in the past month at the trend level. Interestingly, parents who had recent surgery did not report bigger changes in parenting efficacy than those who had not needed recent surgery. It may have been the day-to-day disruptions to routines stemming from multiple trips to the Cancer Center, or the cumulative side effects of treatments that take many weeks to deliver that left parents feeling less able to meet children's needs than after a more discrete event like surgery. Determining how particular cancer treatments affect parenting efficacy and behavior remains an important area for further research that may allow clinicians to help parents prepare more effectively minimizing the impact of these treatments on children.
Along with undergoing certain cancer treatments recently, having poorer physical, social, functional and emotional quality of life, more overall distress, and more depressive symptoms also predicted bigger declines in pre- to post-diagnosis parenting efficacy beliefs. Importantly, most of these same indicators of patient functioning and distress also predicted declines in patient beliefs about their co-parent's efficacy in meeting children's needs. Thus, from the ill parent's perspective, not only is their own parenting impacted by illness, but their partner's is, too. This finding dovetails with earlier research emphasizing the important role that a healthy co-parent has in compensating for disruptions in a child's relationship with the ill parent;9 taken together, the work underscores the importance of assessing parent efficacy and functioning in both co-parents when one parent is ill.
Given the relationship between health-related quality of life and parenting efficacy, it was surprising that parents with metastatic or recurrent cancer did not have bigger declines in parenting self-efficacy than parents without advanced disease. It may be that in this outpatient sample, daily functioning, and in turn parenting efficacy, was more closely related to active treatment status than to spread of illness. It is also possible that longer time since diagnosis in the group with recurrent disease muted the recollection of very positive pre-diagnosis parenting efficacy, or that the many months of parenting with cancer attenuated the contrast for these parents in pre- and post-diagnosis ability to meet children's needs.
Declines in parenting efficacy beliefs were strongly related to parent concerns about the negative impact of their symptoms and changes in routines on children, suggesting that parents believe they are continuing to meet children's needs when they feel able to shield children from these changes. Parents who endorsed the biggest declines in their co-parent's efficacy were also more concerned about the co-parent's ability to provide support to the patient and their children.
Declines in parenting efficacy related to parent concern about the emotional impact of the illness on their children and the potential need for mental health care. While the PCQ Emotional Impact scale does not directly measure child symptomatology or distress, parents’ concern about the emotional impact of cancer may very well reflect child symptoms, and is an important aspect of parenting distress in its own right. This finding aligns with results from a recently published intervention study for mothers with breast cancer, that found that mothers’ sense of efficacy in talking with children about cancer-related concerns, managing the demands of cancer, and staying calm during difficult interactions with children about the cancer, correlated at baseline with lower internalizing and externalizing behaviors in children.13 However, the 5-session intervention that led to significant improvements in mothers’ self-reported ability to help children discuss and cope with their breast cancer, in mother's depressive symptoms, and in children's externalizing problems and depression, did not similarly impact mothers’ sense of efficacy. Thus, there remains much to learn about the links among parent efficacy beliefs, parenting behavior and child distress, and in particular, how much improving parent efficacy beliefs might translate to improvements in children's cancer-related distress.
Overall, our findings suggest that patients with greater cancer-related personal distress and poorer functioning also felt more concerned that their symptoms had a negative impact on children, and experienced bigger declines in beliefs in their parenting efficacy, or ability to meet children's needs. Further, parent distress, poorer functioning, and weaker parent efficacy beliefs all predicted higher parent concern about children's emotional distress. Causal relationships cannot be deduced from these cross-sectional data, and importantly, child symptomatology was not measured. However, the findings provide additional support for a model linking parental cancer to children's distress through changes in parenting behavior and parenting efficacy beliefs. 13
A number of areas for further research are highlighted. In particular, the extent to which parents’ poorer quality of life across multiple arenas, and perception of a decline in meeting children's needs relates to measurable differences in key parenting behaviors must still be determined. Also, it is not clear what might drive a relationship between parent efficacy beliefs, parent functioning and children's distress. It may be that parents who react to changes in functioning with thoughts that they are doing a “bad job” of parenting tend to withdraw from children rather than finding new ways to engage. Parents may assume that interacting while feeling weak or ill could be more harmful than beneficial for children, and may want to spare children additional suffering. The sense of being unable to meet children's needs may contribute to depression, feelings of guilt, or irritability with the co-parent because of increased dependence on them; these feelings in turn may further increase the parent's felt lack of efficacy.
The four items asking about perception of parent and co-parent ability to meet children's needs over time provide only a very general assessment of parenting efficacy beliefs and do not clarify whether certain aspects of parenting are more affected than others by the experience of living with cancer. It would be useful for future studies to include a measure that allows an assessment of task-specific parent efficacy, for example, communication, recognizing distress, and setting limits, as well as parent efficacy in meeting the varying needs of children at different developmental stages. A reliable, well-validated instrument covering content specific to the cancer population is not currently available, but would aid in these efforts.
The current study has several other limitations. The sample was largely white, and middle to upper-middle class, therefore the generalizability of these results to more diverse populations is unclear. As noted above, the cross-sectional data prohibits drawing any conclusions about the direction of associations. Most importantly, the study was based on a single method of data collection from a single source, so the strength of the correlations may reflect shared method variance as well as true associations between constructs.
Nevertheless, the study highlights the importance of identifying and addressing parenting concerns to alleviate distress in accordance with NCCN guidelines. Findings suggest that interventions targeting parent psychosocial distress, distress about children, and parent self-efficacy beliefs, particularly in populations of cancer patients undergoing chemotherapy and radiation treatments, may more fully deliver on the promise of family-centered care.
Precis.
Declines in parenting self-efficacy beliefs after a cancer diagnosis correlated to aspects of treatment, health-related quality of life, depression and distress, and concerns about the impact of cancer on dependent children. The study highlights the importance of identifying parenting concerns as a potential mediator between parental cancer and children's heightened risk for psychosocial difficulties, and addressing these concerns to alleviate patient distress.
Acknowledgments
Research supported by National Institutes of Health grant R03 CA126394-01.
Footnotes
Financial disclosures: None.
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