Journal of Clinical Psychology in Medical Settings, Vol. 1, No. 3, 1994

Caregivers of Adults with Cancer: Multidimensional Correlates of Psychological Distress James R. Rodrigue 1,2 and Russell G. Hoffmann HI 1

The relationship between psychological distress and intrapersonal, family, and socioecological variables was examined in 77 caregivers of adults actively receiving cancer treatment. Results indicated that a sizable minority (29%) of caregivers was experiencing clinically significant psychological distress. Furthermore, family disturbances and maladaptive coping strategies were most predictive of psychological distress in this sample. The clinical implications of these findings in relation to the assessment and treatment of both patients and caregivers are discussed. KEY WORDS: cancer; family coping; caregivers; psychological distress.

INTRODUCTION

Cancer is a medical condition that typically reverberates throughout the family system (e.g., Cassileth & Hamilton, 1979; Ell, Nishimoto, Mantell, & Hamovitch, 1988; Pederson & Valanis, 1988)£ Often, its presence necessitates changes in role relationships and interaction patterns within the family, as well as financial challenges and hardships (Houts et aL, 1986; Wellisch, Fawzy, Landsverk, Pasnau, & Wolcott, 1983). Adults residing in the home are usually thrust into a caregiver role and sometimes must assume roles formerly performed by the patient (Given et aL, 1993). In fact, some cancer treatment centers withhold high-risk cancer treatments (e.g., bone marrow transplantation) if an adult caregiver is not identified or read1Department of Clinical and Health Psychology, P.O. Box 100165, University of Florida Health Sciences Center, Gainesville, Florida 32610-0165. 2To whom correspondence should be addressed. 231 1068-9583/94/0900-0231507.00/0© 1994PlenumPublishingCorporation

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ily available to assist in providing support, financial assistance, and transportation to the patient as well as in interacting with the medical staff. In light of the foregoing, it is not surprising that researchers have focused attention on the distress of caregivers of adults with cancer (Ell et aL, 1988; Kalayjiian, 1989; Keitel, Cramer, & Zevon, 1990; Northouse, 1988). Generally, researchers have found that the psychological and physical health of caregivers decline when caring for another adult with chronic illness (e.g., Pederson & Valanis, 1988; Sales, Schulz, & Beigel, 1992). However, several intrapersonal, family, and socioecological variables have been found to moderate the relationship between the stress of cancer and caregivers' psychological adjustment. Coping style is one intrapersonal variable that has been the focus of study. For instance, Keitel, Cramer, and Zevon (1990) found that coping styles characterized by escape or avoidance (i.e., evading and/or denying the exigencies of illness) are associated with greater psychological distress, especially anxiety and depression. Furthermore, Hannum, Giese-Davis, Harding, and Hatfield (1991) reported an inverse relationship between confrontative and supportive coping styles and psychological distress among husbands of women with breast cancer. Finally, Given et aL (1993) found that dispositional optimism was associated with less depressive symptomatology among caregivers of cancer patients. Coping style, therefore, appears to be related to psychological adaptation, and it emerges as an intrapersonal variable worthy of further exploration among caregivers of adults with cancer. Family variables thought to influence caregivers distress include immediate and extended family relationships and perceived quality of the marital relationship. In general, psychological distress of caregivers is lower when family disturbance is low (Sales et al., 1992), extended family support is high (Baider & De-Nour, 1984; Ell et al., 1988), and marital satisfaction is high (Biegel, Sales, & Schulz, 1991; Hafstrom & Schram, 1984). Moreover, marital adjustment appears to be a particularly salient variable in predicting the quality of life of cancer patients' spouses (Fuller & Swenson, 1992). Socioecological factors also have demonstrated their utility in predicting the psychological distress of caregivers. For instance, social support serves as a buffer to stress by refraining the stressor, fostering coping, or alleviating the emotional reaction to the stressor (Cohen & Wills, 1985; Northouse, 1988). More specifically, spouses of adults with cancer who perceive more support from significant others appear to experience less psychological distress than spouses with less perceived social support (Northouse, 1988). Another socioecological factor that may be related to psychological distress to cancer among caregivers is satisfaction with health care. Perhaps more than ever before, health care providers are encouraging

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more involvement in medical decision making on the part of caregivers (Consortium of Family Organizations, 1992). If research findings with patients (Rodrigue et aL, 1994) are any indication, researchers are likely to find a strong association between caregivers' psychological distress and their satisfaction with the quality of their interactions with the health care system. Although the literature on caregiver distress has expanded in recent years, it is noteworthy that most of this research has been unidimensionat in nature and has focused on identifying the relationship between psychological functioning and one or two important variables (Ell et al., 1988; Kaye & Gracely, 1993; Northouse, 1988). However, we have argued elsewhere (Rodrigue et al., 1994) that a multidimensional model, in which the interrelationships between several key variables can be examined simultaneously, is preferable to the more common unidimensional approach to investigating caregiver distress. Furthermore, many investigations have failed to examine the influence of patients' psychological functioning on caregiver distress. In those instances where this relationship has been investigated, results have been mixed, with some suggesting that the psychological functioning of patients and caregivers fluctuates in tandem (e.g., Ell et al., 1988; Northouse & Swain, 1987) and others reporting an inverse relationship (Hannum et aL, 1991). In light of the foregoing, the present study addresses two general questions that are pertinent to the functioning of caregivers of adults with cancer. First, how prevalent is psychological distress (e.g., depression, anxiety, and global distress) in caregivers of adults with cancer? Second, using a multidimensional approach to investigation, what intrapersonal, family, and socioecological variables buffer the deleterious psychological effects (e.g., depression, anxiety) of caring for adults with cancer? It was hypothesized that a substantial minority of caregivers would report clinically significant levels of psychological distress, and that these caregivers would report greater reliance on coping strategies characterized by acceptanceresignation and avoidance, lower marital quality, more family disturbance, less social support, and more dissatisfaction with health care services compared to caregivers with higher psychological functioning.

METHOD Subjects Subjects were 77 spouses (29 female, 48 male) of adults receiving active treatment (i.e., chemotherapy) for cancer at a large southeastern

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university medical center. Participating spouses were a subset of the 132 families that participated in a larger investigation (Rodrigue et al., 1994). Only those spouses who were living with the patient and identified by the patient as their primary caregiver were included in this study; nine spouses were excluded from the analyses for one or both of these reasons. Caregivers were predominantly male (62%), European American (92%), college educated (54% at least 2 years), and middle class [79% (Hollingshead, 1975)]. For this sample, the mean age of caregivers and patients was 37.6 and 42.3 years, respectively. The mean number of children in the family was 2.4. Patients' mean duration of cancer was 21.6 months (SD = 26.6 months), and the most common cancer types were breast (29%), lymphoma (14%), leukemia (14%), Hodgkin's (9%), and colorectal (9%) (Rodrigue et al., 1994). Procedure

Spouses were recruited through a university medical center that serves the majority of adults with cancer who reside within a small metropolitan area and its surrounding rural communities. A letter specifying the purpose and nature of the investigation was sent to all adults who were scheduled for a clinic appointment during a 14-month period. Patients were subsequently contacted by telephone to request their participation in a study of how adults and their caregivers learn to live with cancer. Ninety-two percent of adults contacted agreed to participate, although only 39% were excluded from the original study due to severe cognitive impairment, newly diagnosed cancer, or other significant medical illness. Patients and their spouses were interviewed by a clinical psychology graduate student at the time of their regularly scheduled clinic appointment. Informed written consent was obtained and participants were assured of the confidentiality of all information received. Questionnaires were completed independently by patients and spouses in the clinic. If patients were unable to remain in clinic to complete their questionnaires (i.e., due to excessive fatigue or illness), they and their spouses were instructed to complete the study instruments independently before returning them by mail to the research team. Measures

Psychological Distress. Caregiver and patient psychological distress were assessed using the Symptom Checklist-90-Revised (SCL-90-R; Derogatis, 1983). This multidimensional self-report instrument assesses several

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aspects of psychological symptomatic distress, including depression, anxiety, somatization, obsessive-compulsive, interpersonal sensitivity, hostility, phobic anxiety, paranoid ideation, and psychoticism. Since depression and anxiety are the most commonly examined indices of psychological functioning in the cancer literature, we decided to focus on these two scales. Additionally, the Global Severity Index (GSI), which represents the overall level of distress reported on the SCL-90-R, was used in this study as a more global index of distress. T scores above the 90th percentile on Depression, Anxiety, and GSI scales were considered clinically elevated. Illness and Demographic Variables. How long patients have had cancer (months), patient and spouse age and gender, and family socioeconomic status (SES; Hollingshead, 1975) were recorded. Duration of illness was verified through medical record review; the confirmed diagnosis date reported in the medical record was the date used to compute illness duration for cases involving discrepancies between patient report and the medical record. Intrapersonal Variables. The 19-item Medical Coping Modes Questionnaire (MCMQ; Feifel, Strack, & Nagy, 1987a, b) was used to assess spouses' illness-related coping patterns across three factor-analytically derived scales--confrontation, avoidance, and acceptance-resignation. For each item, respondents indicate how often they use each particular coping strategy on a 4-point scale (1 = never/very little, 4 = all the time/very much). Confrontation items tap the degree to which spouses actively seek out information about the patient's medical condition, talk to others, and cognitively redefine the illness. Avoidance items assess spouses' use of active avoidance of issues related to the patient's medical condition and its treatments. Acceptance-resignation items tap spouses' use of coping strategies characterized by passivity and capitulation. Feifel et al. (1987a, b) reported moderately high alpha coefficients (confrontation = .70, avoidance = .66, acceptance-resignation = .67) and a high construct validity. Marital and Family Variables. The 15-item Marital Adjustment Scale (MAS; Locke & Wallace, 1959) was completed by spouses to assess their perceived level of marital quality or satisfaction. The MAS is reliable and valid, and it is one of the most widely used measures of marital adjustment (O'Leary & Turkewitz, 1978). The self-report version of the Psychosocial Adjustment to Illness Scale (PAIS; Derogatis, 1975) was administered to spouses. The PAIS was designed to assess the psychological and social adaptation of medical patients and their significant others, and it has been used widely by researchers in medical settings. Two PAIS subscales were designed to tap the degree to which illness has disrupted family functioning. Caregivers in this study indicated how they have been affected by their spouse's illness.

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The Domestic Environment subscale has 8 items (c~ = .68) tapping various aspects of family life, including family adaptability and communication, and the perceived financial impact of illness on the family. The five-item Extended Family Relationships subscale (et = .62) assesses the impact of illness on communication, quality of relationships, and interest in interacting with extended kin. Responses are scored on a 0 to 3 scale and their summed total represented the degree of family disruption secondary to illness in this study. Numerous studies have supported the reliability and validity of the PAIS (Derogatis, Abeloff, & Melisaratos, 1979; Gilbar & De Nour, 1989; Derogatis & Lopez, 1983; Morrow, Chiarello, & Derogatis, 1978). Socioecological Variables. The 23-item Social Support Questionnaire (SSQ; Sarason, Levine, Basham, & Sarason, 1983) was used to assess spouses' perceived social support quantity (N) and satisfaction (S). Respondents answer each item by (a) listing who they can rely on for support in the described situation and (b) rating their level of satisfaction with that support using a 6-point scale. Spouses' satisfaction with the medical community was measured using the 42-item Satisfaction Questionnaire (SQ; Zyzanski, Hulka, & Cassel, 1974). Using a 5-point scale, respondents indicate the degree to which they agree with statements designed to reflect their level of satisfaction across three domains: professional competence of the patient's physicians, personal qualities of the patient's physicians, and cost and convenience of the health care system. Subscale scores are obtained by multiplying the item score by its specific factor loading and then summing these item scores within the subscale. For this study, a total satisfaction score was obtained by summing the three subscale scores.

RESULTS

Spouses were divided into two distress (high versus low) groups based on their responses to the SCL-90-R. High distress was defined as a GSI T score of 63 or higher and/or two or more subscales with a T score of 63 or higher, while low distress was the absence of these conditions (Derogatis & Lopez, 1983). Twenty-nine percent (n = 22) of spouses comprised the high-distress group, while 71% (n = 55) were placed in the low-distress group. Chi-square analyses indicated no significant between groups differences on gender, SES, or patient's treatment history (all p's > .05). Table I presents means, standard deviations, and significant effects for all dependent measures. Familywise significance levels (i.e., Bonferonni correction) were used to reduce Type 1 error. Spouses in the high-distress

Caregivers of Adults with Cancer Table

237

I. Mean, SD, and F Values for Study Measures Across Low- and High-Distress Groups Low distress Variable

Illness and demographic Duration Age Intrapersonal (coping) Confrontation Avoidance Acceptance-resignation Interpersonal Marital satisfaction Patient adjustment Family Family disturbance Extended-family problems Socioecological Social support N S Medical satisfaction

High distress

M

SD

M

SD

F

26.11 47.04

28.91 10.73

33.67 44.08

44.48 10.22

1.72 .52

23.29 12.89 5.89

3.53 3.11 1.60

22.33 15.00 7.83

112.11 56.38

22.66 10.26

94.75 60.50

29.31 10.88

5.52* 1.49

4.71 1.49

2.72 1.55

8.08 2.75

4.74 2.18

10.06"* 5.33*

104.43 135.91 4.03

58.00 23.05 17.22

77.33 108.78 -0.14

65.98 43.01 12.54

1.79 5.97* .14

3.39 2.17 2.29

.72 4.35" 11.36"**

Note. FW, familywiseerror correction. *pFW < .05. **pFW < .0I. ***pFW < ,001.

group reported significantly greater use of coping strategies characterized by avoidance and passive resignation, greater disturbances in family functioning and extended family relationships, lower marital satisfaction, and less satisfaction with social support. No significant between groups effects were observed for spouse age, duration of patient's illness, patient's psychological distress, use of confrontation coping strategy, amount of social support, or satisfaction with the medical community. Table II presents correlation coefficients computed to examine the relationships among spouse distress indices, demographic variables, and other dependent measures. Higher GSI and Depression scores were significantly associated with greater use of acceptance-resignation coping strategies, higher family disturbance secondary to illness, lower marital satisfaction, and less satisfaction with social support. Additionally, higher GSI and Anxiety scores were associated with greater use of coping strategies characterized by avoidance, while higher Depression scores were associated with less frequent use of confrontation coping strategies. Hierarchical multiple regression analyses were computed to determine the relative contribution of intrapersonal, family, and socioecological

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Rodrigue and Hoffmann Table II. Correlation Matrix

GSIa Duration Gender Age SES Confrontation Avoidance Acceptance-resignation Marital satisfaction Patient adjustment Family disturbance Extended family relations Social support N S Medical satisfaction

Depressiona

Anxietya

.05 .06 -.01 -.03 -.10 .29** 30"** -.27** -.18 .42*** .22*

.03 -.17 .19 .05 -25"* .10 .28"** -.25** -.22 .49*** .20

-.04 .10 -.02 .04 -.04 .26 .21 -.07 -.16 .19 .15

-.03 -.26** -.02

-.24* -.29*** -.02

-.02 -.21 -.14

aHigher scores are associated with more distress. *p < .01. **p < .001.

factors to the variance associated with spouses' psychological distress. As presented in Tables III and IV, regression analyses were c o m p u t e d separately for the G S I and Depression scales. Predictor variables were those variables that were significantly associated with G S I a n d / o r D e p r e s s i o n scores (Table II). A regression analysis was not c o m p u t e d for the Anxiety scale because of the largely nonsignificant correlations between this scale and the relevant variables. Coping, family, and socioecological variables acc o u n t e d for 29 and 34% o f the variance in G S I and Depression scores, respectively. In particular, coping strategies and family functioning contribTable III. Results of Regression Analyses: Global Severity Index (GSI) Variable Intrapersonal (coping) Acceptance-resignation Avoidance Family Marital satisfaction Family disturbance Socioecological Social support--S *p < .05.

13

F

.14 .23

1.15 3.89*

-.14 .31

1.15 5.32*

-.10

.50

F change

Cumulative R2

4.53*

.14

3.42*

.29

.50

.29

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Caregivers of Adults with Cancer Table IV. Results of Regression Analyses: Depression

Variable Intrapersonal (coping) Acceptance-Resignation Confrontation Family Extended-family problems Family disturbance Socioecological Social support--S

~

F

.16 -.15

1.36 1.45

.14 .43

1.20 11.06"*

-.16

1.32

F change

Cumulative R2

3.67*

.12

4.65**

.31

1.16

.34

*p < .05,

**p < .01.

uted significantly to the prediction model, whereas socioecological variables did not.

DISCUSSION A central finding of this study was that the majority (71%) of caregivers was experiencing minimal or no psychological distress. This finding suggests that most spouses are able to meet the .many challenges associated with caring for an adult with cancer without experiencing debilitating psychological concomitants. However, a substantial minority (29%) reported clinically significant elevations on measures of global psychological distress and depression. This finding is consistent with previous research on spouses of patients with a chronic illness (Ell et al., 1988; Keitel, Zevon, Rounds, Petrelli, & Karakousis, 1990) as well as research documenting the percentage of patients experiencing psychological difficulties (Rodrigue et al., 1994). Although identifying the percentage of caregivers experiencing psychological distress was important, perhaps the most salient empirical contribution of this study was the finding that several factors were significantly associated with high distress a m o n g caregivers. Overall, a multidimensional model--comprised of coping, family, marital, and social support variables--accounted for 34% of the variance in depression and 29% of the variance in global distress, thus providing further empirical support for a multidimensional approach to assessing the psychological adaptation of caregivers. Surprisingly, anxiety was found to be related to only one (i.e., use of avoidance coping strategies) of the several intrapersonal, family, and socioecological variables examined in this study. This

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finding contradicts previous research on patients (Lansky et al., 1985; Levin, Silberfarb, & Lipowski, 1978) and spouses (Keitel, Zevon, Rounds, Petrelli, & Karakousis, 1990). We attribute this apparent contradiction to differences in methodology. With some measures (e.g., State-Trait Anxiety Inventory; Speilberger, 1985), anxiety comprises a wide range of cognitive, physical, and affective components, whereas with the measure used in the present study (i.e., SCL-90-R), the anxiety subscale comprises fewer and more intensive symptoms that are predominantly cognition based. Therefore, our findings may have been limited by the SCL-90-R's reliance on a narrow band of more pronounced symptomatology and less on the more subtle signs of anxiety. This restricted measurement of anxiety may not be as useful an assessment tool for caregivers of adults with illness. Our findings further indicate that illness-related family disturbances and low marital quality are highly related to distress in caregivers. These findings are not particularly surprising in light of previous research linking family disturbance (e.g., role disruption, family rigidity, communication difficulties, financial turmoil), marital discord, and adjustment difficulties among patients and their family members (e.g., Fuller & Swensen, 1992; Hinds, 1985; Houts et al., 1986; Kaye & Gracely, 1993; Pederson & Valanis, 1988; Rodrigue et al., 1994). Moreover, there is a large body of literature linking marital discord and depression among spouses (e.g., Christian, O'Leary, & Vivian, 1994; Coleman & Miller, 1975). These findings have important clinical implications, particularly when one considers that spouses often are identified as the primary support network for patients. Certainly, an assessment of their perceptions of marital and family relations should be an integral component in determining the degree to which they can serve effectively as a source of emotional support to the patient. Very few researchers have focused specifically on identifying adaptive and maladaptive coping responses of caregivers (Hannum et al., 1991; Keitel, Zevon, Rounds, Petrelli, & Karakousis, 1990). In this study, as in studies with patients (e.g., Burgess, Morris, & Pettingale, 1988; Rodrigue, Boggs, Weiner, & Behen, 1993; Rodrigue et al., 1994), results suggest that caregivers are more likely to show signs of psychological distress if they attempt to escape the exigencies of their spouse's illness and/or adopt a more inactive posture toward coping with illness demands. In contrast, seeking information about cancer and its treatments and talking to others about the spouse's illness appear to be more adaptive and inversely related to depressive symptomatology. Although the coping-distress relationship appears to be similar for patients and spouses, further research is necessary to delineate the effects of similar versus different coping strategies between patient and caregiver.

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The psychological distress of caregivers appears to be related to their level of satisfaction with the social support received in various situations. It is noteworthy, however, that the size of the support network is not the critical element here. That is, caregivers who report feeling dissatisfied with the nature of their social support tend to report more psychological problems whether they identify one person or ten individuals in their social network. This finding suggests that for caregivers who may be having difficulty obtaining social support due to social anxieties and the withdrawal of friends or relatives, the clinician should perhaps focus efforts on strengthening existing affective or instrumental ties rather than encouraging the caregiver to broaden the network size. One methodological note is that the social support measure used in this study does not assess perceived support in the context of illness situations, and therefore future research might examine whether different types of support (e.g., illness-specific versus general) produce similar distress-support relationships. Unlike previous researchers (e.g., Ell et al., 1988; Northouse & Swain, 1987), we found that caregiver distress was not significantly associated with patient distress. Furthermore, our finding contradicts those of Hannum et al. (1990), who reported a significant inverse relationship between spouse and patient. One possible explanation for our finding is the presence of an indirect relationship between spouse and patient distress that is mediated by illness variables and psychosocial variables not assessed in this study. There are potential limitations to this study that should be considered before drawing any major implications. First, we assumed that the primary stressor faced by caregivers at the time of the study was their partner's illness and its associated demands. However, there is the possibility that premorbid stressors (i.e., conflictual home environment) or other psychosocial stressors (e.g., death of a relative or close friend) not assessed in this study influenced caregivers' questionnaire responses. Of course, from a clinical perspective, a careful assessment of additional stressors faced by families living with cancer is essential. Second, the cross-sectional correlational nature of this study does not permit causal interpretation of our findings. For instance, observed relationships can reflect the effect caregiver distress may have on family relations just as well as the opposite. Third, this study relied on self-report assessments and future research should include observations of family or marital interactions in the design. However, despite these limitations, our findings could be used to identify those caregivers who may be at risk for experiencing psychological distress. For instance, caregivers who rely on coping strategies characterized by acceptance-resignation and who feel dissatisfied in their marriage and with their

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social support network may be at risk for experiencing depressive symptomatology.

ACKNOWLEDGMENTS

This research was supported in part by an American Cancer Society Institutional Research Grant (89092A) awarded to the first author. The authors thank Joseph Behen and Tim Tumlin for their assistance with data collection.

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Caregivers of adults with cancer: Multidimensional correlates of psychological distress.

The relationship between psychological distress and intrapersonal, family, and socioecological variables was examined in 77 caregivers of adults activ...
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