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Family Caregivers and Guilt in the Context of Cancer Care

Received March 8, 2006; revised February 16, 2007; accepted February 28, 2007. From the American Cancer Society; University of California, Los Angeles; Univ. of Miami; the Medical College of Wisconsin; and New York Medical College. Send correspondence and reprint requests to Rachel L. Spillers, Behavioral Research Center, American Cancer Society, 250 Williams St. NW, Atlanta, GA 30303-1002. e-mail: rachel.spillers{at}cancer.org
© 2008 The Academy of Psychosomatic Medicine

ABSTRACT

TOP ABSTRACT INTRODUCTION Background METHOD RESULTS DISCUSSION REFERENCES

 
BACKGROUND: Guilt as a key emotional phenomenon in the cancer-caregiving experience is an understudied issue. OBJECTIVE: The purpose of this study is to identify demographic characteristics of cancer caregivers and care-related stress factors that are associated with their feelings of caregiver guilt, as well as to explore the effect of caregiver guilt on their adjustment outcomes. METHOD: A total of 739 caregivers of cancer survivors completed a survey (66.7% response rate), of which 635 provided complete data for the measures in this study. RESULTS: Hierarchical regression analyses revealed that certain caregiver demographics (i.e., younger age, adult offspring, employed) and care-related stress factors (i.e., greater impact on schedule, less perceived caregiving competence, poorer overall health of the care-recipient) were significantly related to caregiver guilt. Higher levels of psychological distress and poorer mental, social, and physical functioning were significantly associated with caregiver guilt, above and beyond the variance accounted for by the covariates. CONCLUSION: Results suggest that caregiver guilt compromises the psychosocial and somatic adjustment of cancer caregivers. Guilt may be a cardinal feature of the caregiving experience, and to fully understand the implications of this complex phenomenon, more research is needed.

INTRODUCTION

TOP ABSTRACT INTRODUCTION Background METHOD RESULTS DISCUSSION REFERENCES

 
Guilt as a key emotional phenomenon in the cancer-caregiving experience is an understudied issue. Specifically, guilt has been referred to as a feeling of responsibility or remorse for falling short of one’s sense of obligation or expectations.¹ Likewise, Harrow and Amdur² defined guilt as a painful, negative psychologic feeling directed toward oneself, with an accompanying belief that one has not lived up to or has violated one’s own internal values or standards about how one should live or behave. The discrepancy that defines guilt exists at the intersection of what one believes and what one does. The induction of guilt is not limited to self (i.e., self-induced guilt); it is also induced by other people (i.e., other-induced guilt). Guilt often arises because different people hold incongruent expectations, and one person’s well-meant actions violate another’s standards. Baumeister et al.³ note that the discrepancy between one’s own standards or expectations and those of another person may be especially salient in the process of guilt-induction, because the inducer is presumably emphasizing his or her own expectations and standards. On the basis of this conceptualization, a caregiver who perceives the actual care provided to their care-recipient as less than what it should be according to their own or others’ standards will experience negative emotions such as guilt. In this study, caregiver guilt (self-induced or other-induced) has been defined as the feeling of inadequacy in their perception of the care they have provided to the care-recipient (i.e., the cancer patient). The purpose of this study is to identify demographic predictors and care-related stress variables related to such caregiver guilt, as well as to explore the association of caregiver guilt on caregivers’ adjustment outcomes.

Background

TOP ABSTRACT INTRODUCTION Background METHOD RESULTS DISCUSSION REFERENCES

 
Family caregivers experience a myriad of psychosocial experiences that can endure throughout their caregiving career. Inevitably, a caregiver’s priorities shift as their caregiving career begins, as attending to the multifaceted needs of their care-recipient becomes paramount. Pearlin et al.⁴ posit that it is this transformation of relationship, from the ordinary exchange of assistance among people to the extraordinary and unequally distributed one-way assistance, that can be a major source of stress for caregivers. In fact, caregivers have often reported levels of psychological distress that are comparable to or even greater than that of their care-recipient.^5–8 In an extensive review of the literature, Schulz et al.⁹ found that, of the 41 studies that were reviewed, virtually all reported a higher prevalence of psychiatric and physical morbidity among caregivers as compared with population norms or control groups.

Studies show that caregivers who do not obtain sufficient time away from the responsibilities of caregiving feel a much greater sense of burden^10,11 and have less success managing their own physical and emotional health.¹² However, caregivers may experience feelings of guilt for taking time away from caregiving to meet their own needs or guilt for feeling as if they should be doing a better job of providing care.^13,14 It is these types of feelings that have the potential to lead to social withdrawal, resulting in a perpetual cycle of guilt.¹⁵

To date, a small number of studies have mentioned caregiver guilt. These have been limited to caregivers of patients with mental disorders¹⁶ and people with neurodegenerative diseases, such as Alzheimer’s disease.^10,17,18 However, although not directly pertaining to caregiver guilt, similar challenges, such as juggling multiple roles with limited resources,¹⁹ depression,²⁰ and anxiety,²¹ have been studied as key predictors of cancer caregivers’ quality of life. Given the heterogeneity of caregivers and their disease-specific care experiences, it is important to understand the prevalence and correlates of caregiver guilt in the context of cancer care.

The bulk of the existing literature shows that female caregivers experience more care-related distress than their male counterparts.^5,8,22 Female caregivers have been shown to be at a greater risk for poorer emotional and physical health consequences, such as high blood pressure and tension or anxiety.^23,24 In addition to caregiver gender, other demographic characteristics, such as age, relationship to the care-recipient, and employment status, have been associated with various indicators of psychosocial and physical adjustment of caregivers. Most notably, younger women have consistently been found to report negative caregiving experiences.^25,26 When the caregiver is the adult daughter of the care-recipient, she has an even greater propensity to experience care-related distress than does the spouse.^24,27 In a study of daughter-caregivers of cancer patients, Raveis et al.^20,21 found that higher levels of anxiety and depression were significantly correlated with poorer health, greater caregiver burden, lack of social support, and a greater sense of filial obligation. However, findings with regard to being employed while providing care have been inconsistent, and mostly in the context of studies investigating multiple roles of caregivers.¹⁹ As yet, no study, to our knowledge, has investigated demographic predictors with regard to caregiver guilt in the context of cancer care.

Care-related stress factors may also be particularly relevant to the caregiver’s adjustment. For example, Kurtz et al.²⁸ conducted a longitudinal study to assess the impact of caregiving on the functioning levels of 491 patient–caregiver dyads. Their results indicated that more impact on schedule, lower social-functioning levels, and a greater sense of abandonment from their family (i.e., lack of family support), all predicted greater levels of psychological distress and poorer physical functioning in caregivers over a period of 1 year. These findings are consistent with other research showing a positive correlation between a lack of family support in providing care,^29,30 more personal interruptions caused by caregiving duties,^25,31 and poorer psychological and physical outcomes of caregiving. Perceived level of incompetence in the caregiver role³² has also been related to psychological distress. Furthermore, the care-recipient’s mental and physical functioning levels have been significantly related to poor psychological and physical outcomes of providing care.³³ Although research findings indicate that certain demographic characteristics of caregivers and various types of care-related stress have adverse effects on caregiver adjustment, there are gaps in the literature with regard to caregiver guilt and how it relates to overall adjustment outcomes (i.e., psychological distress, mental functioning, and physical functioning).

On the basis of the existing literature, we expected that higher levels of caregiver guilt would be associated with caregiver demographic characteristics, such as female gender, being an adult offspring of the cancer survivor, and younger age. Second, the higher levels of caregiver guilt would be significantly associated with greater levels of care-related stress factors, such as lack of family support, having more care-related personal interruptions, feeling less competent in their caregiver role, and lower functional levels of the care-recipient. Given the lack of research on the association between caregiver guilt and adjustment outcomes, we explored this relationship.

METHOD

TOP ABSTRACT INTRODUCTION Background METHOD RESULTS DISCUSSION REFERENCES

 
Participants
Data presented in this article are from the first cohort of baseline data collection from the American Cancer Society’s Quality of Life Survey for Caregivers. This project is a 5-year longitudinal study, with two assessments, which examines the impact of cancer on the quality of life of family members and close friends of those who provide care for the cancer survivor. Cancer survivors participating in the baseline assessment of the Study of Cancer Survivors were asked to nominate a caregiver to participate in a similar quality-of-life study. Caregivers were eligible for participation in the study if they were 1) age 18 years or older; 2) fluent in either English or Spanish; and 3) a resident of the United States. A total of 739 caregivers completed the survey (a 66.7% response rate), of which 635 provided complete data for all study variables included in the subsequent analyses. Participants with incomplete data were not significantly different (all p values greater than 0.05) from those who provided complete data, except that caregivers with incomplete data were more likely to be older (t[697]=4.54; p<0.001) and to have poorer physical functioning (t[720] = –2.55; p<0.05).

Procedures
All procedures were approved by Emory University’s Institutional Review Board before their implementation. A packet containing an introductory letter, survey, self-addressed stamped envelope, frequently-asked questions (FAQ) brochure, and a 60-minute phone card as an incentive was mailed to the nominated informal caregivers. The accompanying introductory letter stated that study participation was completely voluntary, and that there was no penalty for not participating or choosing to stop at any time. Also, the cover letter explicitly stated that by filling out and returning the survey, the participants were agreeing to be in the study. To tailor the survey to the caregiver and to confirm the caregiver–survivor dyad, each survey was personalized by inserting the matched cancer survivor’s first and last name in the first item (i.e., "You were named by Cancer Survivor’s Name as someone who has provided consistent help during his or her experience with cancer.").

Measures
Cancer survivor was defined as an individual that has been diagnosed with cancer, from the time of discovery and for the balance of life.³⁴ Caregiver was defined as a family member or close friend who has provided unpaid care to the cancer survivor. Care was defined in the survey as emotional support, financial support, symptom management, personal care, or transportation.

Demographics
Caregivers’ self-reported gender (1: male; 2: female), relationship to the cancer survivor (1: spouse; 2: adult offspring; and 3: other), employment status (1: employed; 2: not employed), and age were predictor variables in this study.

Care-Related Stress
Six measures were included to assess the level of stress associated with caregiving: 1) A single item asked caregivers whether they were still providing care at the time of assessment (1: yes; 0: no); 2) The degree to which caregivers perceived a lack of family support (abandonment) in their caregiving experience, and 3) The extent to which providing care affected their daily schedule and personal activities, both measured with two subscales from the Caregiver Reaction Assessment (CRA):³⁵ lack of family support, and impact on schedule, respectively. Composite scores were calculated by averaging each of the two 5-item subscales (1: strongly disagree to 5: strongly agree), such that higher scores reflected a stronger impact of the attribute, indicating higher levels of care-related stress. Both subscales have demonstrated good internal consistency in this study (=0.80 for each subscale); 4) Caregivers’ perceived capability to provide care was measured by 2 items from the Caregiving Competence subscale of the Pearlin Stress Scale:⁴ A caregiving competence composite score was calculated by averaging the three items (1: not at all to 4: very much), with lower scores reflecting perceived incompetence in their caregiving role. We took this as a proxy measure for more care-related stress. This subscale showed adequate internal consistency (=0.70); 5) Care-recipients’ self-reported level of mental functioning; and 6) their level of physical functioning were measured with the Medical Outcomes Study Short Form–36 (MOS SF–36).³⁶ Responses to the 36-item generic health status measure were aggregated into 8 dimensions and reflected two summary measures using norm-based scoring: mental functioning (i.e., MCS; a composite score of weighted vitality, social functioning, role-emotional, and mental health subscale scores), and physical functioning (i.e., PCS; a composite score of weighted physical functioning, role-physical, bodily pain, and general health subscale scores). Higher composite scores indicate better functioning of care-recipients. We took this as a proxy measure for less care-related stress.

Caregiver Guilt
This measure was developed for the current research, to assess the extent to which caregivers experience feelings of inadequacy with regard to the care provided to the cancer survivor. Five items were validated (face validity) by 12 experts in the field of cancer and family-based research. The Caregiver Guilt Scale instructions and items are as follows: The following statements reflect how people sometimes feel when taking care of another person: "I have felt guilty for not helping this person enough." "Other people have made me feel guilty for not helping this person enough." "I have felt it was my duty (or obligation) to care for this person." "I have felt guilty for leaving this person alone." and "Other people have made me feel guilty for leaving this person alone." Participants were asked to rate how each item best described their feelings by use of a 5-point Likert-style format (1: Never to 5: Very Often). The composite score was calculated by averaging the items, so that higher scores reflected greater levels of caregiver guilt. The reliability of the scale was evaluated by computing the internal consistency, and inspecting the item/total correlation. One item (i.e., "I have felt it was my duty (or obligation) to care for this person.") exhibited a low item/total correlation and was subsequently dropped from the scale and current analyses. The revised 4-item scale showed an adequate internal consistency (=0.72).

Exploratory factor analysis demonstrated that all four items loaded significantly on one general factor, with loadings ranging from 0.54 to 0.74, which does not support the notion that the scale distinguishes between self-induced or other-induced caregiver guilt. Convergent validity was established when the Caregiver Guilt Scale score was compared with scales that measure similar constructs, such as lack of family support (r=0.20, p<0.001), impact on schedule (r=0.28, p<0.001), and caregiving competence (r = –0.12, p<0.01).

Caregiver Adjustment Outcomes
Three adjustment outcomes were measured: 1) psychological distress; 2) mental/social functioning; and 3) physical functioning. Psychological distress was assessed with the 37-item Profile of Mood States–Short Form (POMS–SF),³⁷ rating items in relation to the past 2 weeks, using a 5-point Likert-style format (1: Not at All to 5: Extremely). A psychological distress composite score was calculated by subtracting the mean of vigor items from the sum of each mean of anger, anxiety, confusion, depression, and fatigue items, with higher scores on this composite reflecting a greater level of psychological distress.^19,38 This composite score had good internal consistency in the present study (=0.92). For the current study, this construct was operationalized as caregivers’ total level of mood disturbance. Caregivers’ self-reported levels of mental/social and physical functioning were measured by use of the MOS SF–36.³⁶ Higher scores reflected better mental/social and physical functioning. In this research, caregivers’ level of mental/social functioning served as an indicator of social adjustment.

Statistical Analysis
Means, standard deviations (SD), and frequencies were calculated to describe the sample. Hierarchical multiple-regression analyses were performed to test whether demographic characteristics of caregivers and care-related stress factors were associated with caregiver guilt. To ascertain the relative importance of each set of predictor variables, caregiver guilt was regressed on demographic variables in Step 1, followed by the care-related stress factors in Step 2 of the analysis.

Next, a series of multivariate general linear modeling analyses were conducted to validate the new construct of caregiver guilt with the three adjustment outcomes (i.e., psychological distress, mental/social functioning, and physical functioning). To explore the unique association between caregiver guilt and adjustment outcomes, caregiver demographic variables and care-related stress factors were included in the model as covariates. The first analysis included all of the caregiver demographic variables as covariates. Likewise, the second set of analyses consisted of care-related stress factors added to the equation as covariates. In the third analysis, caregiver guilt was added. Post-hoc analyses were performed where necessary. Data were analyzed with SPSS Version 14.³⁹

RESULTS

TOP ABSTRACT INTRODUCTION Background METHOD RESULTS DISCUSSION REFERENCES

 
Demographic characteristics of caregivers and descriptive statistics of study variables are shown in Table 1. Most of the participating caregivers were women, middle-aged, and employed. Over half of the caregivers were spouses of the cancer survivor, but other kinship groups were reported. At the time of assessment, the majority (62.2%) of caregivers were not providing care to cancer survivors. Caregivers were almost exclusively White (93.2%), and most were married (82.2%), well-educated (68.8% had obtained more than a high school diploma), and relatively affluent (63.6% reported an annual household income of more than $40,000). Likewise, the majority of cancer survivors were middle-aged (mean age: 59.20 [SD: 12.41] years; range: 28–93), White (92.1%), married (80.1%); and women (57.4%); 25% of the cancer survivors were diagnosed with breast cancer, followed by prostate (20%), colorectal (13%), lung (11%), ovarian (7%), kidney (6%), and other (<5% each of bladder, skin, non-Hodgkin lymphoma, and uterine). The cancer had been diagnosed approximately 2 years (SD: 0.75) before the caregivers completed the survey.

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TABLE 1. Caregiver Demographics and Descriptive Statistics of Study Variables (N=635)

As shown in Table 2, the caregiver’s age, relationship to the cancer survivor, and employment status, among the demographic variables, were significantly related to the degree to which the caregiver felt guilty. Younger caregivers reported higher levels of caregiver guilt. Post-hoc analyses revealed that adult-offspring caregivers (mean: 1.93, SD: 0.68) reported significantly higher levels of caregiver guilt than spouses (mean: 1.58, SD: 0.55) or other types of caregivers (mean: 1.66, SD: 0.70). Employed caregivers also reported higher levels of guilt (mean: 1.71, SD: 0.62) than non-employed caregivers (mean: 1.50, SD: 0.57). No significant differences were evidenced with regard to caregiver gender. Caregiver demographic variables alone significantly accounted for 6% of the variance in predicting caregiver guilt. After controlling for caregiver demographics, the 6 care-related stress factors accounted for an additional 14% of the variance in the prediction of caregiver guilt. Results showed that caregivers reported a higher level of guilt when their schedule had more care-related interruptions, when they felt incompetent in their caregiver role, or when their care-recipient reported lower levels of mental and physical functioning. Providing care at the time of assessment and caregivers’ perception of lack of family support were not significantly related to their level of caregiver guilt. The overall model accounted for 20% of the variance in caregiver guilt scores.

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TABLE 2. Hierarchical Multiple Regression Predicting Caregiver Guilt

Next, a series of multivariate general linear modeling analyses were conducted, predicting three adjustment-outcome variables simultaneously by two sets of covariates, and then caregiver guilt. As shown in Table 3, psychological distress was significantly associated with caregiver gender and age.

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TABLE 3. Multivariate Statistics from Hierarchical General-Linear Modeling Predicting Caregivers’ Adjustment Outcomes

Female caregivers (unstandardized β=1.16; standard error [SE]: 0.36) and caregivers who were younger in age (β = –0.05; SE: 0.02) were more likely to report higher levels of psychological distress. Also, caregivers who were providing care at the time of assessment (β=1.08; SE: 0.28), who lacked support from their family (β=0.67; SE: 0.20), who had more care-related interruptions in their schedule (β=1.74; SE: 0.18), who felt less competent in their caregiver role (β = –0.70; SE: 0.18), and whose care-recipient reported lower levels of mental/social functioning (β = –0.08; SE: 0.01), were more likely to report higher levels of psychological distress. These findings were replicated with regard to caregivers’ level of mental/social functioning. Caregivers’ physical functioning level was also associated with several caregiver demographic variables and care-related stress factors (see Table 3, Physical Functioning). Caregivers who were older in age (β=0.20; SE: 0.03), employed while providing care (β=2.91; SE: 0.86), providing care at the time of assessment (β=1.78; SE: 0.71), and whose care-recipients reported lower levels of mental/social (β = –0.10; SE: 0.04) and physical (β = –0.08; SE: 0.03) functioning were more likely to report poorer levels of physical functioning.

Caregiver guilt was significantly associated with all three adjustment outcomes, over and above the variance accounted for by the caregiver demographics and the care-related stress factors (Table 3, Step 3). Caregivers with greater guilt feelings were more likely to report higher levels of psychological distress (β=1.22; SE: 0.24) and lower levels of mental/social (β = –3.09; SE: 0.72) and physical functioning (β = –1.23; SE: 0.62). The overall model accounted for 40% of the variance in psychological distress, 30% of the variance in mental/social functioning, and 19% of the variance in physical functioning.

A supplementary analysis was conducted to assess the discriminant validity of the Caregiver Guilt Scale by repeating the multivariate general linear modeling analyses described above, but with certain care-related stress variables that are conceptually similar to caregiver guilt (i.e., lack of family support, impact on schedule, and caregiving competence). The care-related stress variables were included in the same step as caregiver guilt. Results revealed that the Caregiver Guilt Scale remained significantly associated with adjustment outcomes: psychological distress (p<0.001), mental/social functioning (p<0.001), and physical functioning (p<0.05). This finding provides support for the discriminant validity of the Caregiver Guilt Scale.

DISCUSSION

TOP ABSTRACT INTRODUCTION Background METHOD RESULTS DISCUSSION REFERENCES

 
This study is the first of its kind to explore a new and important area of research in the context of cancer care with the focus being twofold: 1) to identify demographic characteristics of cancer caregivers and care-related stress factors associated with feelings of caregiver guilt; and 2) to explore the unique association of caregivers’ guilt on their adjustment outcomes.

The results of this exploratory study present a composite picture of who is more likely to experience caregiver guilt, and highlight some of the care-related stress factors that are related to the experience of guilt. This study showed that employed, younger adult offspring of the cancer survivor are more prone to experience caregiver guilt. This finding corroborates the findings of Bernard and colleagues,⁴⁰ who reported a higher level of caregiver burden among adult-offspring caregivers who were faced with the competing demands of being employed and having their own families. This would point toward the notion that role conflicts, inherent in a busy schedule, would increase caregiver guilt when caregiving is one of the roles that must be juggled.

Greater impact on caregiver schedule strongly predicted a higher level of caregiver guilt. Also, a higher level of caregiver guilt was significantly associated with providing care to a loved one whose overall health was poor. It is possible that cancer patients with poor or deteriorating health require more attentive and frequent care, which increases the number of care-related interruptions induced by such care. Furthermore, these findings may reflect the caregiver’s feeling of being overwhelmed and realizing little or no satisfaction in providing care for a person who cannot seem to improve regardless of the caregiver’s efforts. Under this context of care, the caregiver is especially vulnerable to feelings of guilt.

Caregiving competence was inversely correlated with caregiver guilt in this study. Specifically, caregivers with perceptions of incompetence in their caregiving role reported more caregiver guilt. Family caregivers have a strong sense of commitment to provide exceptional care for the cancer survivor; if they feel incompetent to do the necessary job, they may feel inadequate and guilty, perhaps because of a sense of failed obligation.¹⁶ Such guilt may reach its apex in the case of a dying patient, where no task, whether performed well or poorly, appears to make a difference in quality or quantity of life.⁴¹

More importantly, the findings revealed a strong relationship between caregivers’ guilt and their adjustment outcomes for psychological distress and mental/social and physical functioning, regardless of their demographic characteristics or care-related stress factors. With respect to mental/social functioning, these results are in accordance with earlier research, in which burdened caregivers were more likely to withdraw socially.¹⁵ This is precisely within the definition of mental/social functioning (dysfunction) in the current study. Better mental/social functioning was defined as greater levels of social adjustment, which included higher levels of vitality and mental health, and better emotional adjustment to social roles. Thus, caregivers’ guilt appeared to compromise their social adjustment, potentially leading to role-strain and social withdrawal. This adverse impact of caregiver guilt also carried over to their perception of psychological distress, as well as their physical functioning (somatization).

Limitations, Strengths, and Future Directions
These findings should be interpreted in light of several methodological caveats. First, the results are limited by the cross-sectional, self-report, and retrospective nature of the data; therefore, no causal relationships can be determined among these variables. To address these limitations, a follow-up assessment of this sample is underway, which will reflect the impact of caregiver guilt on longer-term functioning. Also, behavioral or physiological measures may complement this self-report data.

Second, generalizability of the study findings is limited to White subjects who are well-educated and relatively affluent. Additional research is needed to replicate the current findings with ethnic minorities and individuals of lower socioeconomic status. It should be recalled that the majority of caregivers (62%) were not providing care at the time of survey completion. Whether or not the caregiver was providing care at assessment was not significantly associated with caregiver guilt. However, we statistically controlled for the effect of caregiving status with the intention that we would not make any generalizations about the effect associated with this variable. It should also be noted that although the current study represents a large sample of cancer caregivers, the presence of selection bias and unmeasured confounding could affect validity.

Third, the Caregiver Guilt Scale was developed for this study and is not a standardized measure; therefore, it is important for additional research to replicate the current findings with other cancer-caregiver samples. Ambiguities still remain with respect to how caregiver guilt is differentiated from similar constructs, such as depression and anxiety. The unique and specific contribution of caregiver guilt to caregiver adjustment—independent of depression or anxiety—needs to be examined in future studies.

Fourth, a modest amount of caregiver guilt was reported by the current sample. It is possible that the level of caregiver guilt is at its highest at the beginning of care-provision, but that it abates over time. Further research is needed to assess potential fluctuations in the amount of caregiver guilt reported at each time-point in the disease trajectory. Also, the amount of variance accounted for in the regression model predicting caregiver guilt was relatively low (20%), suggesting that various other factors need to be assessed in order capture a better understanding of caregiver guilt. Given these limitations, it is important that these findings be viewed as an additional step in understanding the cancer care experience from multiple perspectives and outcomes.

On the other hand, several strengths of the study should also be noted. The current study was the first of its kind to explore the poorly elucidated topic of caregiver guilt. Also, this study consisted of a large sample of cancer caregivers whose relationship to their care-recipients was not limited to spousal partnerships, but also included a considerable number of other relationship types.

In order to understand the caregiver guilt experience even further, it would be valuable for future studies to examine the duration of care, amount and type of caregiver task-involvement, the care-recipient’s cancer type and severity, the caregiver’s health behaviors, additional help received from friends and family, and the caregiver’s motivation for providing care. Research should also take into account the quality of the relationship between the caregiver and the care-recipient, both before and during the care experience.

Being a part of a strong dyad may promote resiliency. Members of a stronger dyad have reported less distress due to cancer than those in dysfunctional relationships.⁴² A recent study of adult attachment styles of spousal caregivers of cancer survivors showed that securely attached caregivers have reported more frequent and varied types of care and less difficulty in providing such care.⁴³ Caregivers who experience caregiver guilt may be so preoccupied with the demands and responsibilities of their role that their relationship with the care-recipient becomes less of a priority, and the quality of care declines. Although caregiver guilt may jeopardize the quality and quantity of care the caregiver provides, it is still unclear whether guilt may serve to enhance interpersonal relationships as a motivator in behavior, thus, contributing positive aspects, as well.^3,13

In conclusion, this study is a first and important step to exploring guilt as a cardinal feature in the cancer-caregiver’s experience. The current findings present a composite picture of who is more likely to experience feelings of caregiver guilt and how these feelings influence adjustment. To fully understand the implications and complex phenomenon of caregiver guilt, more research is needed. Researchers and clinicians may then be able to offer informed strategies for managing caregiver guilt in the context of cancer care.

ACKNOWLEDGMENTS

 
Portions of this article were presented as a poster at the annual meeting of the Society of Behavioral Medicine, San Francisco, CA, March 2006.

This study was funded by the American Cancer Society/National Home Office, Intramural Research.

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