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Hidden Morbidity in Cancer: Spouse Caregivers

Michal Braun, Mario Mikulincer, Anne Rydall, Andrew Walsh, Gary Rodin

From the Sharett Institute of Oncology, Hadassah University Hospital, Jerusalem; Psychology Department, Bar-Ilan University, Ramat-Gan, Israel; Behavioral Sciences and Health Research Division, Toronto General Hospital, University Health Network; Psychosocial Oncology and Palliative Care Department, Princess Margaret Hospital; and Psychosocial Oncology Research Division, Ontario Cancer Institute, University Health Network, Toronto, Canada

Address reprint requests to Michal Braun, PhD, Sharett Institute of Oncology, Hadassah University Hospital, POB 12000, Jerusalem 91120, Israel; e-mail: bmichal2{at}hadassah.org.il

	ABSTRACT

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Purpose This study assesses psychological distress among advanced cancer patients and their spouse caregivers, while examining the relative contribution of caregiving burden and relational variables (attachment orientation and marital satisfaction) to depressive symptoms in the spouse caregivers.

Methods A total of 101 patients with advanced GI or lung cancer and their spouse caregivers were recruited for the study. Measures included Beck Depression Inventory–II (BDI-II), Caregiving Burden scale, Experiences in Close Relationships scale, and ENRICH Marital Satisfaction scale.

Results A total of 38.9% of the caregivers reported significant symptoms of depression (BDI-II 15) compared with 23.0% of their ill spouses (P < .0001). In a hierarchical regression predicting caregiver's depression, spouse caregiver's age and patient's cancer site were entered in the first step, objective caregiving burden was entered in the second step, subjective caregiving burden was entered in the third step, caregiver's attachment scores were entered in the fourth step, and caregiver's marital satisfaction score was entered in the fifth step. The final model accounted for 37% of the variance of caregiver depression, with subjective caregiving burden (β = .38; P < .01), caregiver's anxious attachment (β = .21; P < .05), caregiver's avoidant attachment (β = .20; P < .05), and caregiver's marital satisfaction (β = –.18; P < .05) making significant contributions to the model.

Conclusion Spouse caregivers of patients with advanced cancer are a high-risk population for depression. Subjective caregiving burden and relational variables, such as caregivers' attachment orientations and marital dissatisfaction, are important predictors of caregiver depression.

	INTRODUCTION

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Cancer and its treatment have a major influence on both patients and their significant others. The recent trend toward longer survival and toward ambulatory and home care has increased the number of informal family caregivers and may have amplified their burden.^1-3 In most cases, the spouse becomes the primary informal caregiver.⁴

Spouse caregivers of cancer patients have been found to be adversely affected by the illness in physical and psychological areas.^3,5,6 Their emotional distress may be as high as or even higher than that of the patients themselves.^4,7-11 Caring for spouse caregivers may be important not only to relieve their distress but also because this may have positive effects for their ill spouses.¹² With regard to the latter, spousal support has been found to buffer against patients' distress.¹³

Most studies of cancer caregivers have examined the impact of subjective and objective caregiving burden on caregivers' distress.^4,14 Whereas depression is a general affective state, caregiving burden is a multidimensional construct¹⁵ focusing on the specific caregiving consequences. Objective caregiving burden refers to concrete care tasks, such as assistance with self-care, financial management, and medical and emotional care. In this study, we assessed the amount of caregivers' time devoted to these tasks. Subjective caregiving refers to the experience of caregiving and caregivers' appraisal of their role as caregivers.^4,16,17 Objective and subjective components are only moderately correlated.¹⁸ Some evidence suggests that the impact of objective burden on caregivers' distress is mediated by caregivers' subjective burden.^19,20

Caregiving is an interpersonal exchange, and therefore relational factors may be important determinants of caregivers' well-being. Surprisingly, however, few studies have examined this hypothesis.^3,21 The current study examines the impact on caregivers' depression of relational factors, such as their attachment orientation and marital satisfaction.

Bowlby's attachment theory^22-24 highlighted the need for proximity to others to obtain support and protection as well as individual differences in the way people relate to others. Attachment orientation refers to the way people interact and feel in close relationships, along two main dimensions.^22-25 Anxious attachment reflects the degree to which a person worries that a relationship partner will not be available in times of need.²⁵ Avoidant attachment reflects the extent to which a person distrusts a relationship partner's goodwill and seeks independence and emotional distance.²⁵ Individuals scoring low on these dimensions are securely attached and form satisfactory close relationships.²⁵

The emphasis within the attachment theory on the continuity of care seeking and caregiving across the life span^22,26-28 provides a useful framework for studying caregiving between adult partners. Previous studies have found that attachment anxiety or avoidance is more likely to interfere with effective and sensitive caregiving.^29,30 Specifically, individuals with more avoidant attachment are less likely to provide care,³¹ and the care they provide is insensitive and controlling.³⁰ Although those with more anxious attachment long for closeness and intimacy, they are more likely to be focused on their own needs rather than on needs of their partners.³² In addition, they are likely to feel overwhelmed by distress and to provide care compulsively.^30,33

Although attachment insecurity has been shown to interfere with caregiving of older relatives³⁴ and dementia patients,³⁵ there is only one study examining the contribution of caregivers' attachment orientations to caregiving of cancer patients. Kim and Carver³⁶ have found that caregivers' attachment insecurity was unrelated to frequency of care, but was related to heightened subjective caregiving burden.

Past studies have found significant associations between marital dissatisfaction and psychological distress among spouse caregivers of cancer patients.^10,37-39 However, no study has examined the extent to which caregivers' marital satisfaction contributes to their distress, independent of their attachment orientation in the cancer context. In fact, Collins and Feeney⁴⁰ found among healthy couples that perceptions of caregiving within couple relationships were influenced by both marital satisfaction and attachment orientations. In this study, we examined the unique contribution of these two factors to depression of spouse caregivers of advanced cancer patients. We hypothesized that caregivers' attachment insecurities, marital dissatisfaction, and subjective and objective caregiving burden would be associated with higher levels of caregiver depression.

	METHODS

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Participants
Participants recruited for this study were spouses of patients who participated in a larger longitudinal study of the will to live (WTL) and desire for hastened death among metastatic cancer patients.⁴¹ The spouse caregivers who participated in the current study were not part of the WTL study. Patients were recruited from outpatient clinics at Princess Margaret Hospital, a comprehensive cancer treatment center in Toronto, Canada. Participants were eligible if they were defined as the primary caregiver by a patient with stage III or IV lung cancer or stage IV GI cancer; married to, or in a common law relationship, with this patient; and able to speak and read English. This study received approval from the University Health Network Research Ethics Board, and all participants provided written informed consent.

Procedure
Patients who identified their spouses as their primary caregivers were approached by a research assistant to request permission to contact the spouses. The spouses were contacted by a research assistant at the hospital or at home by telephone. If spouses were approached at the hospital, informed written consent was obtained and participants were given the questionnaire package to complete at home and return by mail. If spouses were contacted by telephone, the consent form and the questionnaires were mailed to their homes, and the signed consent form and completed questionnaires were returned by mail. Reminder telephone calls were made after 2 weeks.

Measures
Demographic and medical data were collected from the spouse, the patient, and from the patient's medical chart. Data included age, sex, education, country of birth, primary language, duration of relationship, employment status, date of cancer diagnosis, and cancer site and stage. Caregivers completed the Demand subscale from the Caregiving Burden Scale⁴² to assess objective caregiving burden. This scale measures how much time a caregiver devoted to 14 caregiving tasks. Ratings were made on a 5-point scale ranging from 1 (little or no time) to 5 (a great deal of time; Cronbach's = .92). They also completed the Difficulty subscale of the Caregiving Burden Scale⁴² to assess subjective caregiving burden, which measures how difficult caregivers appraised the management of 14 caregiving tasks. Ratings were made on a 5-point scale ranging from 1 (little or no difficulty) to 5 (a great deal of difficulty; Cronbach's = .93).

Caregivers also completed two relational measures. First, the 36-item Experiences in Close Relationships Scale ⁴³ was used to assess attachment anxiety and avoidance orientations. Participants are asked to think about their close relationships, without focusing on a specific partner, and rate the extent to which each item described their feelings in close relationships. Ratings were done on a 7-point scale. Eighteen items assess attachment anxiety (Cronbach's = .87) and 18 items assess attachment avoidance (Cronbach's = .78). Attachment researchers⁴⁴ recommend the use of the Experiences in Close Relationships scale continuous scores of anxiety and avoidance because there is no evidence for true attachment categories. The reliability and validity of the two continuous scores have been demonstrated in a wide variety of samples and in different languages.^43,45 Second, the 15-item ENRICH Marital Satisfaction Scale,⁴⁶ assessing satisfaction in various areas of marital relationship. Ratings were done on a 5-point scale (Cronbach's = .89). The ENRICH Marital Satisfaction Scale has been shown to have high reliability and validity.⁴⁶

Patients and caregivers completed the Beck Depression Inventory–II (BDI-II).⁴⁷ This is a 21-item scale assessing intensity of depressive symptoms (Cronbach's = .92). Higher scores reflect more depressive symptoms, and a cutoff of 15 has been shown to have high sensitivity and specificity for diagnosis of major depression in cancer populations.⁴⁸

Given that the WTL study was longitudinal in design with follow-up assessments every 1 to 2 months, patient's scores on the BDI-II were taken from the assessment time that corresponded most closely to the date of completion of the spouse caregiver questionnaire package. The mean time difference between patient and spouse completion of questionnaire was 13.5 days (standard deviation [SD] = 6), whereas 92.1% completed questionnaires within the same month.

Statistical Analysis
Data were analyzed using the Statistical Package for the Social Sciences, version 12.0 for Windows 2000 (SPSS; SPSS Inc, Chicago, IL). Missing data were examined and found to range from 0% to 13% across the study measures. Mean substitution was used for missing total scores, by imputing mean total scores for patients by cancer site (GI or lung). This resulted in minimal, nonsignificant changes in SDs, and analyses run without imputation demonstrated no change in the results. Statistical tests were two tailed with set at .05. Descriptive statistics were calculated to provide information about participants' characteristics, prevalence of depression, and association between variables. Hierarchical regression was used to examine the main predictions.

	RESULTS

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Sample Characteristics
Of the 300 participants in the WTL study between November 2002 and December 2004, 210 (70%) were married or living in a common law relationship. Of these, 192 (91.4%) identified their spouse as their primary caregiver. Seven patients died and 22 withdrew from the WTL study before their spouses were contacted, and one spouse caregiver was not contacted. Of the 162 eligible spouse caregivers, 131 (80.9%) consented to participate and 105 (80.2%) returned their questionnaires. Data from four spouses were not included because their ill partners withdrew from the WTL study before the spouses’ questionnaires were completed. Therefore, the analyses were run on 101 couples of patients and caregivers.

The mean and median age of spouses was 60.0 years (SD = 10.6 years; range, 31 to 80 years). For patients, the mean age was 61.8 years and the median was 63.0 years (SD = 10.3 years; range, 28 to 81 years). Seventy-seven spouses were female (76.2%), 93 (92.1%) were married, and eight (7.9%) were living in a common law relationship. The mean duration of the relationship was 30.4 years and the median was 31 years (SD = 14.1 years; range, 1 to 55 years). Seventy-five patients (74.3%) were diagnosed with GI cancer and 26 patients (25.7%) were diagnosed with lung cancer, and the mean duration of illness was 2.2 years (SD = 2.0 years; range, 0.04 to 8.3 years). There were no significant sex differences on any of the study variables and the mean relationship duration was not associated with these variables. Additional sample characteristics are listed in Table 1. Intercorrelations among the study variables are listed in Table 2.

Objective and Subjective Caregiving Burden
Spouses scored an average of 2.5 (SD = 0.9; range, 1 to 4.9) on objective caregiving burden, indicating that the amount of time devoted to caregiving tasks was moderate. They scored an average of 1.9 (SD = 0.8; range, 1 to 4.4) on subjective caregiving burden, indicating low to moderate perceived difficulty in providing care to patients.

Predictors of Spouse Caregivers' Depression
Hierarchical regression was used to determine to what extent subjective caregiving burden, attachment scores, and marital satisfaction contribute to the prediction of spouse caregivers' depression, beyond the contribution of objective caregiving burden. Spouse caregivers' age and patients' type of cancer (GI v lung) were controlled by entering them in step 1 of the analysis, and together they accounted for 8.5% of the variance in caregivers' depression scores (F_2,97 = 5.59; P < .01). In step 2, objective caregiving burden was entered and accounted for an additional 5.6% of the variance (F_1,96 = 6.38; P < .05). In step 3, subjective caregiving burden was entered and accounted for an additional 10.6% of the variance in spouse caregivers' depression (F_1,95 = 13.75; P < .0001). In step 4, spouse caregivers' anxious and avoidant attachment scores were entered, and together they accounted for an additional 12.1% of the variance (F_2,93 = 9.17; P < .0001). In step 5, caregivers' marital satisfaction was entered and accounted for an additional 2.8% of the variance (F_1,92 = 4.44; P < .05). Overall, this model explained a total of 37% of the variance of spouse caregivers' depression scores, with subjective caregiving burden, caregivers' anxiety and avoidance attachment orientations, and marital satisfaction remaining as the significant predictors (Table 3).

	DISCUSSION

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Previous studies attributed the high prevalence of psychological morbidity in caregivers of cancer patients to objective and subjective aspects of caregiving burden.^4,6,18,29,49 We replicated these findings and showed that subjective caregiving burden was more important than objective caregiving burden in predicting caregivers' depression. Other studies have reported similar findings across different patient populations.⁵⁰

This study is unique in providing information about the contribution of relational variables to spouse caregivers' depression. Higher caregivers' attachment anxiety and avoidance were associated with more depression. The diagnosis of cancer in a partner may activate the attachment system.⁵¹ At this point, anxiously attached individuals are likely to become self-preoccupied and provide insensitive caregiving.^30,40,52-54 Furthermore, in response to the plight of their spouses, these individuals are at risk to become emotionally overwhelmed^55,56 by heightened fear of death and heightened accessibility of death-related thoughts.^45,57 Moreover, anxiously attached individuals are prone to chronic grief after bereavement^58-61 due to their fear of abandonment.⁶² Therefore, such individuals might have a stronger tendency to experience depression when facing their spouses' cancer and potential loss of their partners.

More avoidant individuals may have less adequate knowledge about how to support others, and have less sense of relationship trust.⁵² Moreover, they tend to distance themselves from needy partners as well as from signals of others' suffering.⁶² However, this regulatory strategy might fail to inhibit distress when representations of attachment insecurity are contextually accessible.⁶³ Avoidant strategies have been shown to be effective in reducing distress in neutral situations but not in chronic and severely threatening contexts.⁶³ When facing a spouse's advanced-stage cancer, the regulatory strategies of avoidant individuals may be shattered due to the knowledge of the impending death and separation, which, in turn, can result in heightened depression.

The correlation among attachment scores in the current study is higher than that found in other attachment studies. However, this trend has also been found in other samples of older people who are married for a long time and who share children,⁶³ as in our sample.

In our study, problems in the marital relationship (marital dissatisfaction) were also an important contributor to spouse caregivers' depression. Other studies have shown that marital dissatisfaction contributes to distress of spouse caregivers of cancer patients.^10,37-39 In our study, marital dissatisfaction was found to be an even more important contributor to depression than objective caregiving burden. Giving care to advanced cancer patients demands not only that the spouse be attuned to partner's needs, but also requires the couple to interact in intimate and difficult situations. In such circumstances, it may be fulfilling to give care to someone with whom the caregiver shares a satisfactory relationship.

There are a number of limitations in this study that need to be considered. First, although all the patients in this study were diagnosed with metastatic cancer, most of them were still functioning physically at a relatively high level. As a result, the objective caregiving burden was not very high and the scores were skewed. Additional research should be conducted closer to the end of life in patients with more caregiving needs. Second, the response rate was low, although the response is compatible with other studies of spouses of cancer patients.⁷ Therefore, the possibility of self-selection should be taken into account. Third, two thirds of our caregivers were women. This could have had an influence on our results in some undetected way, although we did not find sex differences. Fourth, the relatively small sample size makes it difficult to examine interactions between study variables and whether results might be different for different subgroups (age, sex). We analyzed some of these interactions (attachment scores by objective caregiving, sex) via hierarchical regressions and none of them were significant. Additional studies should try to replicate our findings in a larger sample while examining relevant interactions. Finally, the cross-sectional nature of the study limits our ability to determine causal relationships. Although subjective caregiving burden and marital satisfaction can influence caregivers' depression, depression can also influence subjective caregiving burden and marital satisfaction. In addition, we were not able to control or examine the effects of participants' depression before the cancer diagnosis.

Our study identifies spouse caregivers of advanced cancer patients as a high-risk population for depression and highlights the important role of relational variables in predicting such symptoms. The ability of individuals to adjust to their role as caregivers of ill spouses is affected both by relational variables and by the subjectively experienced burden of caregiving. Additional research is needed to understand better the role that relational variables play in caregivers' experience and distress. Clinically, there is a need to assist caregivers in their new and demanding role. It is also important to be sensitive to the meaning that caregivers bring to this role based on their attachment orientation. In addition, there is a need to acknowledge the importance of couple relationships to the welfare of both spouse caregivers and patients while facing cancer. Couples interventions should be developed and assimilated.

	AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

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The author(s) indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

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Conception and design: Michal Braun, Mario Mikulincer, Gary Rodin

Administrative support: Michal Braun, Anne Rydall, Andrew Walsh

Collection and assembly of data: Michal Braun, Andrew Walsh

Data analysis and interpretation: Michal Braun, Mario Mikulincer, Andrew Walsh, Gary Rodin

Manuscript writing: Michal Braun, Mario Mikulincer, Anne Rydall, Gary Rodin

Final approval of manuscript: Michal Braun, Mario Mikulincer, Gary Rodin

	ACKNOWLEDGMENTS

 
We thank Lucia Gagliese, PhD, for valuable suggestions and helpful comments.

	NOTES

 
Supported by the Canadian Institutes of Health Research (Grant No. CIHR MOP-62861; G.R.); the Princess Margaret Hospital Foundation, in the memory of Mr. Gerald Kirsh; and from the Department Psychiatry, University Health Network, Toronto, Canada.

Presented at the 8th World Congress of Psycho-Oncology, Venice, Italy, October 18-21, 2006.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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Submitted November 25, 2006; accepted August 9, 2007.

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