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Correspondence: Address correspondence to Charles A. Guarnaccia, PhD, University of North Texas, Department of Psychology, PO Box 311280, Denton, TX 76203-1280. E-mail: Guarnacc{at}unt.edu
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Key Words: Family caregiver role strain • Complicated Grief Model • Relief Model
As terminally ill cancer patients live longer, caregiving becomes a process with increased time investment and involvement. This longer caregiving affects the caregiver's response to the end of this relationship with the patient's death. Thus, family caregiving and bereavement are not separate, but parts of a single chronic stressor of caregiving to, death of, and bereavement for a terminally ill family member. This chronic stressor has cumulative effects on the caregiver; there is a need for research to examine the meaning and impact of the care recipient's death in relationship to the caregiving that preceded this death. In contrast, most bereavement research either does not include information about predeath caregiving or only collects postdeath retrospective information and may thus omit or incorrectly measure key determinants of postdeath adjustment (Bass, Bowman, & Noelker, 1991).
Little is known about caregiver's response to care recipient's death or how the caregiving experience affects bereavement adjustment (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). Bereavement research often focuses on the bereavement experience without examining the impact of related predeath factors. With a lengthy intimate caregiving relationship between a family member and a terminally ill cancer patient, a caregiver's reaction to the care recipient's death cannot be isolated from the caregiving before the death (Bass & Bowman, 1990). Caregiver burden and other predeath factors can influence the caregiver's reaction to the patient's death.
As most caregiver studies include dementia patients, research on caregiving and bereavement adjustment for other illnesses is limited. The cognitive impairments of dementia do not occur in illnesses such as breast cancer, except sometimes briefly at the very end of the disease. Such disease differences influence the caregiving relationship and later the caregiver's bereavement. To the extent that a caregiver's experience differs with the patient's illness, research on caregiving and subsequent bereavement adjustment has to include other patient diseases and circumstances.
Caregiver Role Strain and Burden
Prebereavement caregiver burden contributes to postbereavement adjustment. Role strain difficulty in fulfilling role obligations and its associated burden (Mui & Morrow-Howell, 1993) occur when there are insufficient resources to fulfill role obligations, or there are incompatible role expectations (Mui, 1995). Role strain develops from the attempt to manage such competing expectations of multiple roles (Blanchard-Fields, Chen, & Herbert, 1997), and it may affect psychological well-being and satisfaction. Scarcity theory suggests that with limited coping resources, a person who has a greater number of roles will have greater difficulty fulfilling each role's obligations (Aneshensel et al., 1995).
As caregiving leads to increased obligations and incompatible roles, the potential exists for role strain. Barling, MacEwen, Kelloway, and Higginbottom (1994) found that caregiver role conflict was positively associated with personal strain for eldercare providers and negatively predicted their marital functioning. They concluded that eldercare first fostered role conflict and then role strain as resources depleted. Caregiver strain then affected the marital relationship, as caregivers had reduced ability to devote time and energy to the marital role because of added caregiver obligations. Elder caregiving, role strain, and personal and marital functioning were thus interrelated.
Besides the marital relationship, role strain also affects such roles as parent, friend, and employee. To the extent that caregivers have other such roles, there are more opportunities for role strain. The nature of the primary relationship between caregiver and care recipient, whether it is spousal or parent–child, may also influence role strain. Relationship type both carries unique factors into a caregiving situation and influences role fulfillment outside of the caregiving relationship.
With caregiving comes a profound life change to meet new role demands, such as giving personal hygiene aid, nourishment, oversight of finances, and emotional support. As the patient becomes more dependent, caregiver obligations increase and the time and effort needed increases. As these demands increase, the caregiver may be forced to reduce other roles. Areas that are affected often include family and household roles of spouse, parent, cook, housekeeper, and maintenance; career roles of employer, employee, and coworker; and social roles of friend, club member, and teammate. Social and leisure activities are often the first sacrificed, as these may be viewed as less important.
Roles of Older Spouse and Adult-Daughter Caregivers
As cancer is more common in older adults, terminally ill adults with cancer and their spouse caregivers are often older. In their later-life developmental stage, life roles differ from those of younger adults. The roles of parent and worker are less focal aspects of later life, as children are now adults and less dependent, and many older adults are retired from the workforce. As these roles are eliminated or minimized, older adults show reduced concurrent role responsibility (Rankin, 1990). However, many roles remain, even if in a changed capacity. Older caregivers may still juggle the roles of parent, grandparent, friend, volunteer, and the like (Mui & Morrow-Howell, 1993).
As roles change, personal and social resources change with normal aging (Rankin, 1990). Older adults often experience diminished physical ability, opportunity for social interaction outside of the family, and economic earning capacity. With this resource reduction comes strain in the ability to fulfill roles that utilize these resources. Thus, a caregiver role may be especially taxing for older spouses at greater risk for role strain because of fewer resources to cope with caregiver obligations.
For daughters, the role of parental caregiver is likely to occur in midlife. At this stage their roles often involve substantial time investment characterized by multiple concurrent demands that can include marriage or remarriage, childbearing, child-raising, career, extrafamily commitments, and other adult-daughter obligations (Rankin, 1990; Stone, Cafferata, & Sangl, 1987). At this same time, their parents may be widowed or unable to care for each other because of weakened physical condition.
Models of Bereavement
Literature on caregiver's bereavement adjustment to the care recipient's death suggests two competing models. The Relief Model predicts that caregiver strain abates upon the care recipient's death; this death provides a sense of relief and eases the bereavement process. The Complicated Grief Model predicts that caregiver strain diminishes the psychological resources needed for coping with the bereavement following the care recipient's death.
Relief Model
A Relief Model of bereavement proposes that those who experience increased caregiver strain will experience postdeath caregiver relief, as the stress of caregiver obligations is alleviated (Bass & Bowman, 1990). Caregiver strain ends, as the caregiver role ends, with the death of the care recipient. The relief of responsibilities frees the individual to reestablish neglected roles such as employment, social and leisure, or time with children. The end of caregiving also frees psychological resources to allow better adjustment to the care recipient's death. The vanished demands of caregiving provide a sense of relief that eases the bereavement process, so caregivers experience less bereavement adjustment difficulty. Mullan (1992) found that major caregiving stressors were eliminated the 1st year after death, and caregivers experienced almost immediate relief after the care recipient's death, with a feeling of reduced overloaded and an increased sense of life mastery.
Complicated Grief Model
A Complicated Grief Model predicts that greater caregiver role strain leads to greater difficulty in subsequent bereavement. Proposed mechanisms emphasize the extended stress exposure of terminal cancer patient caregivers. Caregiver stress accumulates over time and circumstances to diminish coping resources for later bereavement. The stressful obligations and multiple responsibilities of caregiving also interfere with resolution of the relationship with the patient before the patient's death (a "saying good-bye" process). This lack of closure and unresolved relationship issues between caregiver and care recipient complicate the bereavement process. In addition, stress theory predicts that psychological distress depends on the extent perceived demands exceed coping resources, with successive stressors further depleting these resources. As a failure to cope likely leads to negative consequences, when coping capacity is exhausted, an individual is more vulnerable (W. Stroebe & Stroebe, 1993). Bass and Bowman (1990) found that family members who perceive caregiving as more difficult were at greater risk for troubled bereavement adjustment.
Summary and Hypotheses Tested
The Relief Model and the Complicated Grief Model predict opposite relationships between caregiver strain and bereavement adjustment outcome. In the Relief Model, the bereaved caregiver experiences reduced strain and returns to precaregiving primary roles, thus easing adjustment to the death of the patient. In the Complicated Grief Model, caregiving strain depletes coping resources and reduces the ability to resolve relationship issues with the patient and prepare for the patient's death; this increases bereavement adjustment difficulties. Literature in this area provides inconsistent support for each of these models, suggesting that other factors may influence this caregiver strain to bereavement adjustment relationship.
This study tests if family relationship to the patient influences the impact of caregiver strain on bereavement adjustment. Husband caregivers and daughter caregivers also differ in their primary roles outside of caregiving, which also has implications for caregiver strain. Bereavement adjustment will follow a different pattern depending on the caregiver's primary relationship with the patient, that is, whether the relationship is husband and wife or adult daughter and mother.
With the wife's death, although caregiver strain is removed, the husband has the continued added responsibilities of the wife that deplete resources for coping and may complicate bereavement. Greater role strain before the patient's death leaves the husband fewer psychological resources to cope with the death. As outside assistance disappears with the wife's death, husbands may experience an increase in responsibilities and may not experience any significant period of relief. Husbands' bereavement adjustment is thus predicted to follow a Complicated Grief Model; husbands with greater caregiver strain will experience more difficult bereavement adjustment.
The relationship between a mother and adult daughter involves less interdependence than spouses. Adult-daughter caregiver strain occurs as caregiving adds to primary role responsibilities. During caregiving, the daughter who experiences increased role strain is likely to reduce other roles to alleviate this strain. With the mother's death, the daughter can reestablish involvement and return to previous functioning in these areas. As the daughter is relieved of caregiver strain and returns to other social roles, she may find support and increased resources to help bereavement adjustment. Thus, daughters' bereavement adjustment is predicted to follow a Relief Model.
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Methods |
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Data presented here are from 213 breast cancer patients with either a husband (n = 126) or adult daughter (n = 87) primary caregiver. These patients ranged in age from 33 to 82 years (M = 65.6), had on average a high school diploma, and were mostly White (93%). As expected, husband caregivers (age, M = 63.9) were on average older than daughter caregivers (age, M = 41.4). Husbands and daughters did not differ in education, employment status, or income. All husband caregivers lived with their wives, whereas 62% of daughter caregivers lived with their mothers. Of patients with daughter caregivers, 72% were widowed and 17% were married. Of daughter caregivers, 61% were married, 17% had never been married, 14% were divorced, and 6% were widowed.
National Hospice Study initial interviews were done within a few days of physician or oncology nurse referral. In this first interview, caregiver lifestyle change (leisure and family activity, financial resources, employment role or status) and health or psychological change data since caring for the patient were collected. A follow-up interview was done 1 to 3 weeks later and repeated every 2 weeks until the patient's death. In these follow-ups, the caregiver provided information on family quality of life during caregiving, caregiver's satisfaction with patient care, secondary morbidity experienced by the family, and difficulties giving continuing support to the patient. Approximately 90 days after the patient's death, a bereavement interview was conducted with the caregiver. This last interview assessed the caregiver's medical, social, and psychological status (Greer & Mor, 1987).
Measures
Caregiver Strain
Prebereavement caregiver strain scales were developed to be independent variables to predict subsequent bereavement adjustment. To develop these caregiver strain scales, 30 face-valid items related to different aspects of caregiving strain were selected from the initial (intake) interview and entered into a principle-component factor analysis that examined both a two- and a three-factor solution. For both solutions the first two factors were similar and conceptually interpretable. As the third factor was not interpretable, the two-factor solution was selected. Cross-loaded items were then eliminated, and less strongly loaded items were retained only if they made conceptual sense. Table 1 shows the final items and loadings. These empirically derived caregiver strain factors were labeled "Anxiety and Depression Symptoms" and "Loss or Depletion of Resources." Although different content areas of strain did not emerge in this factor analysis as initially thought, theoretically derived categories reflecting such areas of caregiver life strain were examined. Six theoretically derived caregiver life strain area categories (shown in Table 2 below the two empirically derived factors) were constructed on the basis of item face validity. Both the empirical and theoretical organizations of caregiver strain were used to predict bereavement adjustment. Caregiver strain items were on a 0–1 (absent–present) scale. All scale scores were calculated as an item mean.
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Analyses examined bereavement as measured by the condensed GEI scale and the 12-item GEI-Despair subscale. The Despair subscale was also used as sufficient items were retained from the original subscale to allow such analyses. According to Sanders and colleagues (1985), the GEI-Despair subscale measures the survivor's mood as characterized by pessimistic outlook on life, feelings of hopelessness or worthlessness, slowing of thoughts and actions, and low self-esteem; this scale "is the most pervasive psychological expression of grief" (p. 8). The 33-item condensed GEI scale had an alpha internal consistency reliability of.91 for these data, and the 12-item GEI-Despair subscale had an alpha reliability of.84. This condensed GEI scale had a mean corrected item-total correlation of.47, and the Despair subscale had a mean corrected item-total correlation of.48. Given the reliability, item-total correlation, and face validity of these scales, they are believed to be good short forms of the original GEI and maintain the construct validity of the original GEI inventory.
Overview of Analytical Procedures Used
As already described, initial measure development focused on creation of the empirically derived and theoretically derived independent variable Caregiver Strain scales and the GEI-derived dependent variable Bereavement scales. Following the aforementioned measurement formulation, the first data analyses, subsequently discussed, compare scale elevations using means-difference t tests for comparisons on all these developed scales between the samples of husbands and daughters. Next, prediction of the two 90-day post-care-recipient death bereavement adjustment measures was attempted by using caregiver age and the previously derived strain scales as independent variables. This prediction was first examined with Pearson r correlations and then further examined with stepwise regression equations.
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Predictors of Caregiver GEI and GEI-Despair
Table 3 shows the correlations among caregiver's age, empirically derived caregiver strain factors, and theoretically derived caregiver life strain area categories with GEI and GEI-Despair for husbands and daughters. These correlations were examined as a precursor to stepwise regression prediction of GEI and GEI-Despair by the empirical and theoretical organizations of caregiver strain. For both husbands and daughters, older age correlated with fewer bereavement adjustment problems. For husband caregivers, the Anxiety and Depression Symptoms factor and the Psychological or Emotional and Health Strain categories predicted more GEI and GEI-Despair bereavement problems. For daughters, no measure of caregiver strain was correlated with GEI or GEI-Despair.
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The second two regression equations entered the six theoretical caregiver life strain area categories to again predict total GEI and then GEI-Despair. As shown in the lower top half of Table 4, greater caregiver Psychological or Emotional Strain (t = 3.50; p <.05) and Health Strain (t = 2.31; p <.05) predicted more GEI bereavement problems. As shown in the lower bottom half of Table 4, greater caregiver Psychological or Emotional Strain (t = 3.58; p <.01) and Health Strain (t = 2.10; p <.05) also predicted more GEI-Despair bereavement symptoms. The other four caregiver life strain area categories did not enter these two regression equations as predictors. This second set of regression equations also closely follows the zero-order correlations in Table 3.
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Discussion |
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As seen in Table 2, during caregiving, daughters experienced more caregiver family strain and anxiety and depression symptoms than husbands did. From Rankin (1990), we know that these adult daughters are likely to have multiple concurrent noncaregiver demands involving substantial time investment. The combined roles of spouse, mother, and employee may not be particularly stressful. However, the added role of aging-parent parental caregiver is burdensome and difficult for women, potentially creating role strains (Walker, Pratt, & Wood, 1993).
In a role conflict study, Stephens, Townsend, Martire, and Druley (1998) found that the clash between the role of caregiver to a parent and other roles explains the relationship between women's caregiver stress and psychological well-being. Here caregiving for a parent negatively affected adult daughters' well-being as caregiving drained time and energy resources. This was particularly true when caregiving demands conflicted with the ability to meet demands of other roles and explained greater symptoms of these adult daughters.
To the extent that greater anxiety and depression symptoms during caregiving are indicative of greater global caregiver strain, adult-daughter caregivers may experience greater overall role strain and burden than husband caregivers. In our study, the higher level of caregiver family strain for adult daughters than for husbands suggests that family life is particularly negatively affected when these daughters add the caregiver role to their lives. Items in this family strain category include "lack of family support," "decreased family intimacy," and "family tension," and they suggest the type of family role conflicts these daughters experience in caregiving. Here, Family Strain refers to disrupted family relationships during caregiving. It is noteworthy that husbands' very low mean level of Family Strain in Table 2, near zero, suggests this life strain category can have little impact on husbands.
Husbands' Bereavement Adjustment
The regression analyses form the main findings of this study. For husband caregivers, greater prebereavement anxiety and depression symptoms, psychological or emotional strain, and health strain during caregiving predicted worse bereavement adjustment 90 days after their wife's death from breast cancer. Besides not disputing the predicted Complicated Grief Model, these results add to our understanding of how predeath psychosocial factors have an impact on bereavement adjustment for such husband caregivers of end-stage breast cancer patients in hospice care.
Greater Anxiety and Depression Symptoms and Psychological or Emotional Strain caregiver measures seem strongly related to one another. Both are reflective of greater perceived caregiver strain and indicative of worse current caregiver adjustment. Caregiver Health Strain as a predictor of later bereavement adjustment points to the importance of good, or at least stable, personal health in allowing a husband caregiver to cope with the death of his wife. Reich, Zautra, and Guarnaccia (1989) similarly showed the importance of health in the bereavement adjustment of both older widows and widowers to the death of a spouse. W. Stroebe and Stroebe (1987) and M. S. Stroebe, Stroebe, and Hansson (1993) also discussed the link between health and successful bereavement adjustment.
The caregiver Loss or Depletion of Resources and four of the life strain area categories were not predictive of greater GEI and GEI-Despair in husband's bereavement. This can be viewed in terms of the caregivers' ability to cope with loss of resources and strain in employment, family, social, and caregiving areas. Although caregivers may all experience some degree of depleted resources and life area strain, individual subjective experience of these losses may differ. Those experiencing more anxiety and depression symptoms may be those caregivers who are experiencing difficulty adjusting to these depleted resources and life strains. Therefore, these symptoms may be a better measure of the quality of caregiver strain than the quantitative loss of resources or nonhealth strain.
Daughters' Bereavement Adjustment
For daughters, neither Anxiety and Depression Symptoms nor Loss or Depletion of Resources and none of the six caregiver life strain area categories predicted GEI or GEI-Despair bereavement adjustment. Regression analyses did not support either the Relief Model or the Complicated Grief Model of Bereavement for daughters; the lack of significant correlations in Table 3 suggested this would be the case. The husband–daughter comparisons in Table 2 do not show any difference in the level of general GEI or specific GEI-Despair bereavement adjustment, indicating daughters are not faring any better or worse than husbands 90 days postbereavement. The regression results suggest that the nature of the relationship between mothers and adult-daughter caregivers appears to be more ambiguous than that of the spousal relationship in terms of predicting general grief or despair bereavement outcome for daughter caregivers. Differences in roles between daughters and husbands may have more implications for the pattern of coping and bereavement adjustment rather than the degree of bereavement adjustment after the patient's death.
Differences between husbands' and daughters' experiences of caregiver strain and later bereavement adjustment may be an artifact of gender differences in coping. A large body of bereavement research indicates that women have better adjustment to bereavement than men do. However, the focus of such research is primarily comparing widows to widowers, generally finding that widowers experience greater problems than widows. General gender comparisons or comparisons of other female versus male groups (such as husband and daughter caregivers) are scarce (W. Stroebe & Stroebe, 1993).
Although the two models tested focus on only one predictive factor of bereavement adjustment, caregiver strain, it is important to note that other factors should be included in developing a more complete model. Such factors might include quality of the patient–caregiver relationship, duration of caregiving, and amount of time and nature of involvement in the caregiving role. As the focus of the National Hospice Study was insurance and financial matters related to patient care, data were not available to address these other important psychosocial factors in analyses. Nevertheless, these basic models and this research serve as a solid foundation from which future research can expand to develop comprehensive models of caregiver factors that influence bereavement adjustment.
Clinical Applications and Future Directions
In this examination of the impact of role strain on bereavement adjustment for husband and daughter caregivers, the nature of family relationships placed limitations on the ability to address confounding variables. Gender is confounded within the caregiver's relationship to the parent, husband, or daughter. When one is trying to assess the role of gender, it is possible, for example, to compare wife caregivers to terminally ill husbands; however, then the stability of disease site is lost. Despite potential methods for addressing various confounds related to caregiver relationship, the reality is that husband caregivers are older males and daughter caregivers are younger females. Generalities for husbands and daughters caregivers should not be made because of the unique characteristics and real-world differences they bring to caregiving.
In terms of clinical application, finding predictors of bereavement adjustment within each caregiver group may be more beneficial in establishing appropriate interventions than comparisons between groups. For husbands, greater prebereavement caregiver anxiety and depression symptoms and psychological or emotional strain warns of greater risk for worse bereavement adjustment. Because of its direct nature, this can be a clear indicator that husbands are in need of additional caregiver support. Such screening would add to the value of hospice services to husband caregivers.
Specificity in the application of these findings to caregiver populations also serves a practical benefit. Resources available to caregiving families, such as support groups, psychotherapy, and care assistance, are limited. Additionally, caregivers experiencing role strain caused by heightened demands of caregiving have limited personal resources such as time and energy to engage in supportive activities, and they may perceive such activities as an additional burden. It is thus necessary to provide caregivers with only those resources that will be the most beneficial based on specific needs of the individual and make the best use of the caregivers' limited time and energy. By specifying the unique predictors of bereavement adjustment within specific groups of caregivers, interventions that are more appropriate may be developed, and such interventions can be targeted more appropriately.
These daughter caregivers may also fail to fit any general model of caregiving and bereavement adjustment, because of the specific nature of their mothers' illness, breast cancer. Unlike terminal diseases such as Alzheimer's disease that have been the focus of caregiver research, breast cancer may involve specific emotional significance for the daughters and not the husbands of its sufferers. Wellisch, Gritz, Schain, Wang, and Siau (1992) suggested emotional themes associated particularly with daughters of breast cancer patients that may affect the applicability of general bereavement models based on other diseases. Daughters experience a fear of death by breast cancer or identify with the mutilated body image they hold of their mother, or both. They may experience unresolved grief or depression regarding the loss of their mother, which may be related to insufficient time spent with her, particularly if the death is viewed as premature or preventable by early detection or different treatment. Wellisch and colleagues suggested that these daughters may experience anxiety regarding their own risk for breast cancer such that they either avoid or are hypervigilant in effective health practices, such as early cancer detection. As mother's breast cancer uniquely affects the victim's surviving daughters, the applicability of any general models of bereavement adjustment to these caregiving daughters may be limited.
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Footnotes |
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Decision Editor: Laurence G. Branch, PhD
Received for publication February 20, 2001. Accepted for publication October 14, 2002.
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