Journal of Surgical Oncology 43:148-153 (1990)
Spouse Adjustment to Cancer Surgery: Distress and Coping Responses MERLE A. KEITEL, PhD, MICHAEL A. ZEVON, PhD, JAMES B. ROUNDS, P ~ D , NICHOLAS J . PETRELLI, MD, FACS, AND CONSTANTINE KARAKOUSIS, MD, PhD From the Graduate School of Education, Fordham University, New York, New York (M.A.K.); Departments of Psychology (M.A.Z.) and Surgical Oncology (N.I.P., C.K.), Roswell Park Memorial Institute, Buffalo; Department of Educational Psychology, University of lllinois at Urbana-Champaign (I.5.R.)
Although often acknowledged, the impact of the surgical treatment of cancer on the spouse of the adult cancer patient is a largely unexplored area. The present study examined distress, coping, and appraisal among spouses (N = 36) and patients (N = 43) assessed prior to and following surgery. The results indicated that at both the presurgical and postsurgical period, spouses were exhibiting significantly greater distress than patients. Surprisingly, spouses’ levels of distress remained fairly constant across the presurgery to postsurgery period, while the patients’ distress decreased. Escape and avoidance behaviors were found to be maladaptive for spouses coping with their partners’ surgical treatment. Appraisal was also found to be a critical factor in understanding individual reactions to the stress of cancer surgery. Spouses of cancer patients undergoing surgical treatment appear to be an underacknowledged population at risk. KEY WORDS:medical stressors, distress moderators, appraisal
INTRODUCTION The impact of cancer on the family members of adult cancer patients has been the focus of increasing attention [l-31. This is not surprising, given that severe health threats affect not only the individual who is diagnosed with the disease, but close friends and relatives as well. Spouses’ reactions, as distinct from those of other family members, have seldom been specifically investigated, despite prior reports that spouses of patients suffering from serious and chronic illnesses reported both physical and emotional deterioration [4-81. Spouses of cancer patients, in particular, have only infrequently been considered in investigations of illness adaptation. Those investigators that have examined spouses’ responses to their partners’ illness noted that spouses reported feelings of helplessness, fatigue, social isolation, resentment, guilt, anxiety, and depression [9-151. Given these findings, the critical nature of the support provided by a spouse [ 161, and the fact that the loss of a spouse has been rated as one of the most stressful life events an individual can experience [ 171, an expanded investiga0 1990 Wiley-Liss, Inc.
tion of the spouses’ reactions to their partners’ illnesses and treatments seems warranted. If we are to obtain an accurate understanding of the experience of cancer patients and their spouses, however, it is critical that we examine clearly defined events in the often protracted and complex cancer treatment process. Without such a focus, it becomes difficult to isolate the specific stimuli to which individuals are responding. Psychological responses to the three traditional approaches to the treatment of cancer-chemotherapy, radiotherapy, and surgery-have unique characteristics and deserve individual investigation, parAccepted for publication November 13, 1989. Address reprint requests to Dr. Merle A . Keitel, Fordham University at Lincoln Center, West 60th Street and Columbus Avenue, New York, NY 10023. This research was supported in part by National Cancer Institute Grant CA 16056. Portions of this article were presented at the annual meeting of the American Psychological Association, Washington, DC, August, 1986.
Adjustment to Cancer Surgery
ticularly in light of the fact that cancer treatments are often considered by patients to be more devastating than the disease itself [ 181. The present study focuses on the spouses of cancer patients and their responses to a specific type of cancer treatment-surgery. The primary purpose is to investigate presurgery and postsurgery fluctuations in the distress experienced by spouses in response to their partners’ surgical treatment. A secondary purpose is to examine how spouses appraise and cope with their partners’ cancer surgeries. Appraisal and coping were investigated in light of the literature that identifies an individual’s appraisal or evaluation of a medical stressor, and the manner in which he or she copes with the stressor, as important moderators of distress [19,20].
METHODS Study Sample The subjects consisted of patients admitted to Roswell Park Memorial Institute (RPMI) for surgical treatment of upper gastrointestinal cancer, melanoma, or colorectal cancer, and their spouses. Patients were selected according to the following criteria: minimum age of 18 years, major surgery that required general rather than local anesthesia, and no other concurrent treatments such as chemotherapy or radiotherapy. A total of 43 patients, 36 spouses, and 28 patient-spouse pairs served as subjects in the study. Patient (mean age = 56 years) and spouse (mean age = 52 years) demographics were contrasted by chi-square or t-tests, as appropriate. Significant differences were found only with regard to gender. The patient sample was predominantly male, while the spouse sample was predominantly female. No differences were found between patients and spouses with respect to age, religion, or education. There were 12 patients (28%) who underwent surgery for upper gastrointestinal cancer; 20 patients (46%) underwent colorectal surgery; and l l patients (26%) underwent surgery for treatment of melanoma. The modal patient was ambulatory or fully active at admission, and first diagnosed with a malignancy within the year. Table I summarizes the medical demographics of the 43 patient participants.
149
TABLE I. Patient Medical Demographics %
Site of lesion: Upper gastrointestinal Colorectal Soft tissue/melanoma Performance status at admission: Fully active Ambulatory In bed (50% of the time) Time since diagnosis: Within 6 months 6 months to 1 year 1 year to 2 years Over 3 years Cancer history: First primary Second primary Third primary Recurrence Surgical complexity: Simple Average Moderately complex Very complex
28 46 26 81 16 3 46 22 19
13 72 S
5 18
33 33 19 1s ~
ment of current psychological functioning, prior use with medical and surgical patients, and demonstrated validity. Raw scores were computed for each dimension and summary score and then converted to T scores. The normative sample used in this conversion consisted of male and female middle-aged nonpsychiatric patients [2 11. The Ways of Coping Checklist (WCCL). The WCCL assesses coping strategies in response to specific stressful events rather than coping styles or traits [22]. The 66 item checklist assesses a wide range of thoughts and behaviors people use to deal with stressful events, and provides scores on 8 subscales: 1) confrontive coping, 2) distancing, 3) self-control, 4) seeking social support, 5 ) accepting responsibility, 6) escape and avoidance, 7) problem-solving, and 8) positive reappraisal. Appraisal scale (AS). The AS is a measure developed as part of a study investigating the relationship between coping and affect in cancer surgery patients [23]. Spouses were asked to respond to items in reference to their perceptions of their partners’ surgeries both prior to and following the event. Responses were made Measures on a 5 point scale ranging from 0 (not at all) to 4 (a great The Symptom Checklist-90-Revised (SCL-90-R). deal). The spouses were asked whether they viewed the The SCL-90-R is a 90 item checklist measuring situsurgery as stressful or positive, as well as whether and to ation-specific distress [2 I ] . The SCL-90-R provides what degree they regarded the surgery as threatening or scores on nine primary symptom dimensions (i.e., somharmful. atization, obsessive-compulsive, interpersonal sensitivFinal Interview Questionnaire. The Final Interity, depression, anxiety, hostility, phobic anxiety, para- view Questionnaire was administered to patients and noid ideation, and psychoticism) and three summary spouses and consisted of two questions: distress scales. The SCL-90-R was chosen as the primary measure of psychological distress based on its assess- 1. What events occurred while you (your spouse) were
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Keitel et al.
in the hospital which made coping with surgery easier? 2. What events occurred while you (your spouse) were in the hospital which made coping with the surgery more difficult?
TABLE 11. Repeated Measures Multivariate Analysis of Variance: Patient-Spouse Status by Presurgical-Postsurgical Time Period for the SCL-90-R Dimensions
This questionnaire was administered at or about the time of the patients’ discharge from the hospital.
Overall F“.” Univariate Fa Somatization Obsessive-compulsive Interpersonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoid ideation Psvchoticism
Procedure The participation of all patients scheduled for major surgery on the upper gastrointestinal, melanoma, or colorectal inpatient units at RPMI, and their spouses, was solicited. Spouses and patients completed the measures at two time points, the presurgical period (from 6 days to I day presurgery) and the postsurgical period (from 10 to 14 days postsurgery). The instructions for each form were reviewed, and patients and spouses were asked to complete their forms independently. Data Analysis Overview The first step in the analysis was to descriptively analyze the study data. Means and standard deviations were obtained for each measure administered at the presurgical and postsurgical periods. Repeated measures multivariate analyses of variance were employed to address the major research questions in this study. Hypotheses relating to patient-spouse differences in distress, differences in distress over time (from the presurgical to the postsurgical period), and the interaction between patient-spouse status and time were tested in this manner. Differences between spouses who appraised the surgery as stressful vs. benign were tested with t-tests for independent samples. Relationships between the SCL-90-R dimensions and other variables of interest were examined with Pearson product moment correlation coefficients. Similar responses on the Final Interview Questionnaire were grouped, and the percentage of responses in each category calculated. RESULTS Psychological Distress A repeated measures multivariate analysis of variance was used to examine differences in levels of distress between patients and spouses, changes in distress levels from the presurgical to the postsurgical period, and the interaction between patient-spouse status and time. The results are reported in Table 11. The multivariate F-tests showed significant main effects for patient-spouse status and for presurgical-postsurgical interval, as well as a significant patient-spouse x presurgical-postsurgical interaction. This analysis compared distress levels in only those patients and spouses who were married to one another. Spouses reported greater distress than did patients both presurgically and postsurgically . An exami-
Patientspouse status
Presurgicalpostsurgical (time)
PatientSpouse X time
3.65**
4.08**
3.56”
3.59 18.25** I2.05** 10.79** 17.41** 8.22** 8.79** 5.79** 1.18
1.57 14.10** 3.56 9.45** 24.29** 4.90**
.75 9.19** .05 1.63 3.15 .I6 .I8 7.00*
5.15**
3.67 14.50” *
12.18**
“The F-test is a statistical test that determines whether the mean scores for each group are significantly different. bOverall F-tests are based on sample sizes ranging from 22 to 28. *P < .05.
**P < .01.
nation of the univariate F-tests and means shows that spouses reported significantly higher levels of distress on seven of the nine SCL-90-R clinical scales. As a group, patients and spouses significantly lowered their distress on six of the nine clinical scales from the presurgical to the postsurgical period. A significant interaction effect was found, however, for three of the nine clinical dimensions. Obsessive-compulsive behavior, paranoid ideation, and psychoticism (alienation) scores decreased for patients following surgery. Spouses, however, maintained their elevations on these scales. Figure 1 displays the mean T-score elevations on the SCL-90-R for spouses and patients at the presurgical and postsurgical assessments. On the average, spouses reported moderate elevations on anxiety, depression, and obsessive-compulsive behavior, in comparison to the nonpsychiatric normative sample. Following their partner’s surgeries, obsessive-compulsive behavior, depression, anxiety, and psychoticism remained elevated. It is important to note that the psychoticism scale in a nonpsychiatric population reflects, for the most part, feelings of alienation from others and not necessarily symptoms of overt psychosis such as delusions and hallucinations. Patients reported only slight elevations in psychoticism (alienation), anxiety, and depression prior to their surgery. Following surgery, their distress levels approximated that of the nonpsychiatric normative sample. The pattern of distress was strikingly similar in patients and spouses. Anxiety and depression were the predominant features of the psychological distress experienced by patients and spouses, particularly in the presurgical period.
Adjustment to Cancer Surgery 8o
75 c + 70
r
---- Spouse
ln
.o -
151
-
Patient
65
60 Q)
5
55
0
cnI
50
-
45
I-
E 30
t
I 1
Presurgery I
SOM 0 - C
1
1
I
I
Postsurgery I
I
I
I
I
!
I
I
I
I
I
I
T-S DEP ANX HOS PHOB PAR PSY SOM 0 - C I-S DEP ANX HOS PHOB PAR PSY
SCL- 90- R Scales Fig. 1. Mean T-score elevations in spouses and patients in the presurgical and postsurgical periods. SOM, somatization; 0-C, obsessive-compulsive; I-S, interpersonal sensitivity; DEP, depression; ANX, anxiety; HOS, hostility; PHOB, phobic anxiety; PAR, paranoid ideation; PSY, psychoticism.
Appraisal The presurgical SCL-90-R means and standard deviations for spouses who appraised the surgery as stressful vs. those who appraised the surgery as benign-positive were calculated. The results of t-tests for independent samples indicated that, in the presurgical period, spouses who appraised the surgery as stressful were indeed more distressed as reflected by their significantly higher scores on the interpersonal sensitivity, depression, anxiety, and hostility scales, and the global severity and positive symptom total summary indices (all P < .05). In the postsurgical period, spouses who appraised the surgery as stressful had significantly higher scores on the interpersonal sensitivity, anxiety, hostility, and phobic anxiety scales, and the positive symptom distress summary index (all P < .05). Coping Table 111presents the factors that patients and spouses found to facilitate coping with cancer surgery as well as the factors that patients and spouses found to hinder coping with surgery. Patients and spouses generally agreed that the following factors facilitated coping with surgery: social support; confidence in the physicians, the nurses, and the hospital; positive news regarding disease status; and accurate and honest information from medical personnel. Whereas patients and spouses responded similarly
with respect to the factors that facilitated coping, they clearly differed with respect to factors that hindered the coping process. Of the patients, 36% could not identify any factors that made the surgery more difficult to cope with, while only 8% of the spouses responded in this manner. In contrast, 38% of the spouses reported that uncertainty regarding future complications, disease progression, and treatments made coping with the surgery more difficult. This was true, however, for only 3% of the patients. These differences seemed to reflect a tendency for the spouses to look further into the future, while the patients were more focused on the present and the immediate challenges posed by surgery. Negative news from physicians regarding disease status hindered coping for both patients and spouses. The patients also listed the following factors as making coping more difficult: pain and discomfort, changes in lifestyle including but not limited to eating and drinking behaviors, and seeing other patients in pain or listening to their experiences with cancer. A number of patients reported that feeling that they were imposing on others, particularly their spouses, made coping more difficult. Additional factors that hindered coping for spouses included the patients’ negative attitudes, the waiting period prior to surgery, separation from family members while their partners were in the hospital, and feelings of empathy for the patients’ condition (e.g., pain, discomfort, weakness, and fear).
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TABLE 111. Factors That Facilitated or Hindered Coping Patients Spouses Factors that facilitated coping: Social support Confidence in physicians and nurses Positive news regarding disease SVdtUS Honest and accurate feedback from physicians Factors that hindered coping: No report Uncertainty of future Negative news regarding disease status Waiting prior to surgery
(%)
(%)
43 33 24
38 25 25 21
36 3 13 0
8 38 9 22
15
The analysis of the WCCL coping data demonstrated a striking relationship between the use of escape and avoidance coping and psychological distress both before and after surgery (see Table IV). The other coping strategies, however, failed to demonstrate statistically significant relationships with distress either presurgically or postsurgically . Prior to surgery, escape and avoidance scale scores showed positive relationships with the obsessive-compulsive behavior, interpersonal sensitivity, hostility, psychoticism, and global severity SCL-90-R scales. Postsurgically , escape and avoidance coping was even more clearly associated with distress. Relationships were found between escape and avoidance coping and all the SCL-90-R scales except for the somatization, hostility, and paranoid ideation scales. In other words, the greater the frequency with which escape and avoidance coping was used, the greater the psychological distress. Surprisingly, no coping strategies were significantly associated with lower distress.
DISCUSSION Perhaps the most striking result of the present investigation was that spouses exhibited higher levels of distress than did the cancer patients undergoing surgical treatment. While the basis for this difference must be studied empirically, several possible interpretations are suggested. Responses to the Final Interview Questionnaire, for example, indicated that spouses were looking beyond the surgical event to the future course of the illness itself, while patients appeared to experience some resolution of their distress after surgery. Spouses maintained their higher levels of distress in the face of an uncertain future. A second, though not necessarily mutually exclusive hypothesis, is that spouses experienced heightened feelings of helplessness in addition to the sadness and fear experienced by many patients. It is especially difficult to watch someone you love endure the pain and discomfort often associated with cancer treatment. Helplessness may have complicated the spouses'
TABLE 1V. Correlations Between Escape-Avoidance Coping Scores and Scores on the SCL-90-R SCL-90-R scales Somatization Obsessive-compulsive Interpersonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoid ideation Psychoticism Global severity Positive symptom distress index
Presureery"
Postsurgerv"
.I7 .35* .42**
.36 .59** 52"* .60** .51** .26 .49"* .26
.30 .25 .35" .30 .28 .33 .34* .23
.4h**
.60*" . I3
"N = 36. hN = 28. *P < .05. * * P < .01
responses and contributed to the higher levels of psychological distress reported in the spouse group. Appraisal was found to be an essential factor in understanding individual reactions to stressful events. In both the presurgical and postsurgical periods, spouses who appraised their partners' surgeries as more stressful were more symptomatic than spouses who appraised the surgeries as benign or positive. Interesting relationships were also observed between coping and distress in spouses. Surprisingly, no coping strategies were associated with lower distress. The escape and avoidance coping response was associated with greater psychological distress in spouses both prior to and following the surgery. This finding extends previous research that found that avoidant coping strategies were maladaptive for patients coping with cancer [24]. In a similar vein, spouses of recently discharged patients who engaged in escape-avoidance based coping exhibited higher levels of depression and greater conflict with friends and family members [ 2 5 ] . Other studies, however, found avoidant coping responses to be adaptive in medical situations where there is little opportunity for control [26]. Further research is needed to clarify the factors inherent in situations where avoidant strategies are adaptive as opposed to maladaptive. The intensity of the distress reported by the spouses investigated herein suggests that spouses of cancer surgery patients are in need of attention and support. Hospitals with inpatient facilities should be encouraged to provide spouses with ongoing support groups, thus enabling the spouses to obtain support in a structured and consistent manner. Interventions could be directed toward developing new and flexible coping strategies, identifying support systems, and providing emotional support. Spouses need to be given adequate time and opportunity to ask questions about both the disease and
Adjustment to Cancer Surgery
treatment. Information that is honest and direct allows realistic planning for the future. Extending hope, as appropriate, is critical [27]. In conclusion, the present study empirically investigated how spouses cope with and adjust to their mates’ cancer surgery. Because cancer is a complex disease process, and coping is best studied with respect to a specific event, this study focused on the process by which spouses appraise and cope with their partners’ surgical treatment. In addition to focusing on a specific situation (i.e., surgery) in the usually long treatment process, the present study also examined patients’ and spouses’ responses at a consistent point prior to and following the surgery. The results of this investigation clearly indicated that for both the presurgical and postsurgical periods, spouses of cancer surgery patients exhibited significantly greater distress than the patients themselves. Furthermore, while patients’ psychological distress decreased over the presurgery to postsurgery period, spouses’ levels remained relatively constant. Given these and related findings [ 14,151, spouses of patients undergoing surgical treatment appear to be an underacknowledged population at risk.
ACKNOWLEDGMENTS The authors would like to thank Harold 0. Douglas, Jr., M.D., and Margaret Bluff, R.N., for their help in conducting this study. REFERENCES 1, Friedenbergs I, Gordon W, Hubbard M, Levine L, Wolf C , Diller
2. 3. 4.
5. 6.
L: Psychosocial aspects of living with cancer: A review of the literature. Int J Psychiatry Med l1:303-329, 1982. Welch D: Anticipatory grief reactions in family members of adult patients. Issues Ment Health Nurs 4:149, 1982. Cassileth BR, Lusk EJ, Strouse TB, Miller DS, Brown LL, Cross, PA: A psychological analysis of cancer patients and their next of kin. Cancer 55:72-76, 1985. Croog SH, Fitzgerald EF: Subjective stress and serious illness of a spouse: Wives of heart patients. J Health Soc Behdv 1: 166-178, 1978. Dhooper SS: Family coping with the crisis of a heart attack. Soc Work Health Care 9:15-31, 1983. Klein RF, Dean A, Bogdonoff MD: The impact of illness upon the spouse. J Chronic Dis 20241-248, 1967.
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7. Schmidt D: The family as the unit of medical care. J Fam Pract 1:303-313, 1978. 8. Schoeneman S Z , Reznikoff M, Bacon SJ: Personality variables in coping with the stress of a spouse’s chronic illness. J Clin Psychol 39:40-46, 1983. 9. Vachon MLS, Friedman K, Formo A, Rogers J , Lyall WAL, Freeman JJ: The final illness in cancer: The widow’s perspective. Can Med Assoc J 117:1151-1154, 1977. 10. Dyk RB, Sutherland AM: Adaptation of spouse and other family members to the colostomy patient. Cancer 9.1 120-1 126, 1956. 1 1. Wortman CB, Dunkel-Schetter C: Interpersonal relationships and cancer: A theoretical analysis. J Soc Issues 35:120-155, 1979. 12. LeFebvre KA: The cancer patients and their spouses: A study by self report. PhD Thesis, University of Tennessee, 1977. Diss Abstr Int 38:4466B, 1978. 13. Baider L, Kaplan De-Nour, A: Couples’ reactions and adjustment to mastectomy: A preliminary report. Int J Psychiatry Med 14: 265-276, 1984. 14. Northouse LL, Swain MA: Adjustment of patients and husbands to the initial impact of breast cancer. Nurs Res 36:221-225, 1987. 15. Oberst MT, James RH: Going home: Patient and spouse adjustment following cancer surgery. Top Clin Nurs 7:46-57, 1985. 16. Northouse LL: Social support in patients’ and husbands’ adjustment to breast cancer. Nurs Res 37:91-95, 1988. 17. Holmes TH, Rahe RH: The social readjustment rating scale. J Psychosom Res Il:213-218, 1967. 18. Burish TG, Lyles JN: Coping with the adverse effects of cancer treatments. In Burish T, Bradley L (eds): “Coping with Chronic Disease: Research and Applications. ” New York: Academic Press, 1983, pp 159-189. 19. Lazarus RS, Folkman S: “Stress, Appraisal and Coping.” New York: Springer Publishing Company, 1984. 20. Cohen F, Lazarus RS: Active coping processes, coping dispositions and recovery from surgery. Psychosom Med 35:375-389, 1973. 21. Derogatis LR: “SCL-90-R Manual.” Baltimore: John Hopkins University Press, 1977. 22. Folkman S , Lazarus RS, Dunkel-Schetter C, Delongis A, Gruen R: The dynamics of a stressful encounter: Cognitive appraisal, coping and encounter outcomes. J Pers Soc Psychol 50:9921003. 1986. 23. Zevon MA, Rounds JR, Baker J: Appraisal and coping in cancer patients before and after surgery. Presented at the annual meeting of the American Psychological Association, Washington, DC, August, 1986. 24. Weisman AD, Worden JW: The existential plight in cancer: Significance of the first 100 days. Int J Psychiatry Med 7:1-15. 1976. 25. Parris Stephens MA, Norris VK, Kinney JM, Ritchie SW, Grotz RC: Stressful situations in caregiving: Relations between caregiver coping and well-being. Psych Aging 3:208-209, 1988. 26. Cronkite RC, Moos RH: The role of predisposing and moderating factors in the stress-illness relationship. J Health Soc Behav 25: 372-393, 1984. 27. Cassileth BR, Steinfeld AD: Psychological preparation of the patient and the family. Cancer 60547-552, 1987.
Spouse Adjustment to Cancer Surgery: Distress and Coping Responses MERLE A. KEITEL, PhD, MICHAEL A. ZEVON, PhD, JAMES B. ROUNDS, P ~ D , NICHOLAS J . PETRELLI, MD, FACS, AND CONSTANTINE KARAKOUSIS, MD, PhD From the Graduate School of Education, Fordham University, New York, New York (M.A.K.); Departments of Psychology (M.A.Z.) and Surgical Oncology (N.I.P., C.K.), Roswell Park Memorial Institute, Buffalo; Department of Educational Psychology, University of lllinois at Urbana-Champaign (I.5.R.)
Although often acknowledged, the impact of the surgical treatment of cancer on the spouse of the adult cancer patient is a largely unexplored area. The present study examined distress, coping, and appraisal among spouses (N = 36) and patients (N = 43) assessed prior to and following surgery. The results indicated that at both the presurgical and postsurgical period, spouses were exhibiting significantly greater distress than patients. Surprisingly, spouses’ levels of distress remained fairly constant across the presurgery to postsurgery period, while the patients’ distress decreased. Escape and avoidance behaviors were found to be maladaptive for spouses coping with their partners’ surgical treatment. Appraisal was also found to be a critical factor in understanding individual reactions to the stress of cancer surgery. Spouses of cancer patients undergoing surgical treatment appear to be an underacknowledged population at risk. KEY WORDS:medical stressors, distress moderators, appraisal
INTRODUCTION The impact of cancer on the family members of adult cancer patients has been the focus of increasing attention [l-31. This is not surprising, given that severe health threats affect not only the individual who is diagnosed with the disease, but close friends and relatives as well. Spouses’ reactions, as distinct from those of other family members, have seldom been specifically investigated, despite prior reports that spouses of patients suffering from serious and chronic illnesses reported both physical and emotional deterioration [4-81. Spouses of cancer patients, in particular, have only infrequently been considered in investigations of illness adaptation. Those investigators that have examined spouses’ responses to their partners’ illness noted that spouses reported feelings of helplessness, fatigue, social isolation, resentment, guilt, anxiety, and depression [9-151. Given these findings, the critical nature of the support provided by a spouse [ 161, and the fact that the loss of a spouse has been rated as one of the most stressful life events an individual can experience [ 171, an expanded investiga0 1990 Wiley-Liss, Inc.
tion of the spouses’ reactions to their partners’ illnesses and treatments seems warranted. If we are to obtain an accurate understanding of the experience of cancer patients and their spouses, however, it is critical that we examine clearly defined events in the often protracted and complex cancer treatment process. Without such a focus, it becomes difficult to isolate the specific stimuli to which individuals are responding. Psychological responses to the three traditional approaches to the treatment of cancer-chemotherapy, radiotherapy, and surgery-have unique characteristics and deserve individual investigation, parAccepted for publication November 13, 1989. Address reprint requests to Dr. Merle A . Keitel, Fordham University at Lincoln Center, West 60th Street and Columbus Avenue, New York, NY 10023. This research was supported in part by National Cancer Institute Grant CA 16056. Portions of this article were presented at the annual meeting of the American Psychological Association, Washington, DC, August, 1986.
Adjustment to Cancer Surgery
ticularly in light of the fact that cancer treatments are often considered by patients to be more devastating than the disease itself [ 181. The present study focuses on the spouses of cancer patients and their responses to a specific type of cancer treatment-surgery. The primary purpose is to investigate presurgery and postsurgery fluctuations in the distress experienced by spouses in response to their partners’ surgical treatment. A secondary purpose is to examine how spouses appraise and cope with their partners’ cancer surgeries. Appraisal and coping were investigated in light of the literature that identifies an individual’s appraisal or evaluation of a medical stressor, and the manner in which he or she copes with the stressor, as important moderators of distress [19,20].
METHODS Study Sample The subjects consisted of patients admitted to Roswell Park Memorial Institute (RPMI) for surgical treatment of upper gastrointestinal cancer, melanoma, or colorectal cancer, and their spouses. Patients were selected according to the following criteria: minimum age of 18 years, major surgery that required general rather than local anesthesia, and no other concurrent treatments such as chemotherapy or radiotherapy. A total of 43 patients, 36 spouses, and 28 patient-spouse pairs served as subjects in the study. Patient (mean age = 56 years) and spouse (mean age = 52 years) demographics were contrasted by chi-square or t-tests, as appropriate. Significant differences were found only with regard to gender. The patient sample was predominantly male, while the spouse sample was predominantly female. No differences were found between patients and spouses with respect to age, religion, or education. There were 12 patients (28%) who underwent surgery for upper gastrointestinal cancer; 20 patients (46%) underwent colorectal surgery; and l l patients (26%) underwent surgery for treatment of melanoma. The modal patient was ambulatory or fully active at admission, and first diagnosed with a malignancy within the year. Table I summarizes the medical demographics of the 43 patient participants.
149
TABLE I. Patient Medical Demographics %
Site of lesion: Upper gastrointestinal Colorectal Soft tissue/melanoma Performance status at admission: Fully active Ambulatory In bed (50% of the time) Time since diagnosis: Within 6 months 6 months to 1 year 1 year to 2 years Over 3 years Cancer history: First primary Second primary Third primary Recurrence Surgical complexity: Simple Average Moderately complex Very complex
28 46 26 81 16 3 46 22 19
13 72 S
5 18
33 33 19 1s ~
ment of current psychological functioning, prior use with medical and surgical patients, and demonstrated validity. Raw scores were computed for each dimension and summary score and then converted to T scores. The normative sample used in this conversion consisted of male and female middle-aged nonpsychiatric patients [2 11. The Ways of Coping Checklist (WCCL). The WCCL assesses coping strategies in response to specific stressful events rather than coping styles or traits [22]. The 66 item checklist assesses a wide range of thoughts and behaviors people use to deal with stressful events, and provides scores on 8 subscales: 1) confrontive coping, 2) distancing, 3) self-control, 4) seeking social support, 5 ) accepting responsibility, 6) escape and avoidance, 7) problem-solving, and 8) positive reappraisal. Appraisal scale (AS). The AS is a measure developed as part of a study investigating the relationship between coping and affect in cancer surgery patients [23]. Spouses were asked to respond to items in reference to their perceptions of their partners’ surgeries both prior to and following the event. Responses were made Measures on a 5 point scale ranging from 0 (not at all) to 4 (a great The Symptom Checklist-90-Revised (SCL-90-R). deal). The spouses were asked whether they viewed the The SCL-90-R is a 90 item checklist measuring situsurgery as stressful or positive, as well as whether and to ation-specific distress [2 I ] . The SCL-90-R provides what degree they regarded the surgery as threatening or scores on nine primary symptom dimensions (i.e., somharmful. atization, obsessive-compulsive, interpersonal sensitivFinal Interview Questionnaire. The Final Interity, depression, anxiety, hostility, phobic anxiety, para- view Questionnaire was administered to patients and noid ideation, and psychoticism) and three summary spouses and consisted of two questions: distress scales. The SCL-90-R was chosen as the primary measure of psychological distress based on its assess- 1. What events occurred while you (your spouse) were
150
Keitel et al.
in the hospital which made coping with surgery easier? 2. What events occurred while you (your spouse) were in the hospital which made coping with the surgery more difficult?
TABLE 11. Repeated Measures Multivariate Analysis of Variance: Patient-Spouse Status by Presurgical-Postsurgical Time Period for the SCL-90-R Dimensions
This questionnaire was administered at or about the time of the patients’ discharge from the hospital.
Overall F“.” Univariate Fa Somatization Obsessive-compulsive Interpersonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoid ideation Psvchoticism
Procedure The participation of all patients scheduled for major surgery on the upper gastrointestinal, melanoma, or colorectal inpatient units at RPMI, and their spouses, was solicited. Spouses and patients completed the measures at two time points, the presurgical period (from 6 days to I day presurgery) and the postsurgical period (from 10 to 14 days postsurgery). The instructions for each form were reviewed, and patients and spouses were asked to complete their forms independently. Data Analysis Overview The first step in the analysis was to descriptively analyze the study data. Means and standard deviations were obtained for each measure administered at the presurgical and postsurgical periods. Repeated measures multivariate analyses of variance were employed to address the major research questions in this study. Hypotheses relating to patient-spouse differences in distress, differences in distress over time (from the presurgical to the postsurgical period), and the interaction between patient-spouse status and time were tested in this manner. Differences between spouses who appraised the surgery as stressful vs. benign were tested with t-tests for independent samples. Relationships between the SCL-90-R dimensions and other variables of interest were examined with Pearson product moment correlation coefficients. Similar responses on the Final Interview Questionnaire were grouped, and the percentage of responses in each category calculated. RESULTS Psychological Distress A repeated measures multivariate analysis of variance was used to examine differences in levels of distress between patients and spouses, changes in distress levels from the presurgical to the postsurgical period, and the interaction between patient-spouse status and time. The results are reported in Table 11. The multivariate F-tests showed significant main effects for patient-spouse status and for presurgical-postsurgical interval, as well as a significant patient-spouse x presurgical-postsurgical interaction. This analysis compared distress levels in only those patients and spouses who were married to one another. Spouses reported greater distress than did patients both presurgically and postsurgically . An exami-
Patientspouse status
Presurgicalpostsurgical (time)
PatientSpouse X time
3.65**
4.08**
3.56”
3.59 18.25** I2.05** 10.79** 17.41** 8.22** 8.79** 5.79** 1.18
1.57 14.10** 3.56 9.45** 24.29** 4.90**
.75 9.19** .05 1.63 3.15 .I6 .I8 7.00*
5.15**
3.67 14.50” *
12.18**
“The F-test is a statistical test that determines whether the mean scores for each group are significantly different. bOverall F-tests are based on sample sizes ranging from 22 to 28. *P < .05.
**P < .01.
nation of the univariate F-tests and means shows that spouses reported significantly higher levels of distress on seven of the nine SCL-90-R clinical scales. As a group, patients and spouses significantly lowered their distress on six of the nine clinical scales from the presurgical to the postsurgical period. A significant interaction effect was found, however, for three of the nine clinical dimensions. Obsessive-compulsive behavior, paranoid ideation, and psychoticism (alienation) scores decreased for patients following surgery. Spouses, however, maintained their elevations on these scales. Figure 1 displays the mean T-score elevations on the SCL-90-R for spouses and patients at the presurgical and postsurgical assessments. On the average, spouses reported moderate elevations on anxiety, depression, and obsessive-compulsive behavior, in comparison to the nonpsychiatric normative sample. Following their partner’s surgeries, obsessive-compulsive behavior, depression, anxiety, and psychoticism remained elevated. It is important to note that the psychoticism scale in a nonpsychiatric population reflects, for the most part, feelings of alienation from others and not necessarily symptoms of overt psychosis such as delusions and hallucinations. Patients reported only slight elevations in psychoticism (alienation), anxiety, and depression prior to their surgery. Following surgery, their distress levels approximated that of the nonpsychiatric normative sample. The pattern of distress was strikingly similar in patients and spouses. Anxiety and depression were the predominant features of the psychological distress experienced by patients and spouses, particularly in the presurgical period.
Adjustment to Cancer Surgery 8o
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-
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T-S DEP ANX HOS PHOB PAR PSY SOM 0 - C I-S DEP ANX HOS PHOB PAR PSY
SCL- 90- R Scales Fig. 1. Mean T-score elevations in spouses and patients in the presurgical and postsurgical periods. SOM, somatization; 0-C, obsessive-compulsive; I-S, interpersonal sensitivity; DEP, depression; ANX, anxiety; HOS, hostility; PHOB, phobic anxiety; PAR, paranoid ideation; PSY, psychoticism.
Appraisal The presurgical SCL-90-R means and standard deviations for spouses who appraised the surgery as stressful vs. those who appraised the surgery as benign-positive were calculated. The results of t-tests for independent samples indicated that, in the presurgical period, spouses who appraised the surgery as stressful were indeed more distressed as reflected by their significantly higher scores on the interpersonal sensitivity, depression, anxiety, and hostility scales, and the global severity and positive symptom total summary indices (all P < .05). In the postsurgical period, spouses who appraised the surgery as stressful had significantly higher scores on the interpersonal sensitivity, anxiety, hostility, and phobic anxiety scales, and the positive symptom distress summary index (all P < .05). Coping Table 111presents the factors that patients and spouses found to facilitate coping with cancer surgery as well as the factors that patients and spouses found to hinder coping with surgery. Patients and spouses generally agreed that the following factors facilitated coping with surgery: social support; confidence in the physicians, the nurses, and the hospital; positive news regarding disease status; and accurate and honest information from medical personnel. Whereas patients and spouses responded similarly
with respect to the factors that facilitated coping, they clearly differed with respect to factors that hindered the coping process. Of the patients, 36% could not identify any factors that made the surgery more difficult to cope with, while only 8% of the spouses responded in this manner. In contrast, 38% of the spouses reported that uncertainty regarding future complications, disease progression, and treatments made coping with the surgery more difficult. This was true, however, for only 3% of the patients. These differences seemed to reflect a tendency for the spouses to look further into the future, while the patients were more focused on the present and the immediate challenges posed by surgery. Negative news from physicians regarding disease status hindered coping for both patients and spouses. The patients also listed the following factors as making coping more difficult: pain and discomfort, changes in lifestyle including but not limited to eating and drinking behaviors, and seeing other patients in pain or listening to their experiences with cancer. A number of patients reported that feeling that they were imposing on others, particularly their spouses, made coping more difficult. Additional factors that hindered coping for spouses included the patients’ negative attitudes, the waiting period prior to surgery, separation from family members while their partners were in the hospital, and feelings of empathy for the patients’ condition (e.g., pain, discomfort, weakness, and fear).
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Keitel et al.
TABLE 111. Factors That Facilitated or Hindered Coping Patients Spouses Factors that facilitated coping: Social support Confidence in physicians and nurses Positive news regarding disease SVdtUS Honest and accurate feedback from physicians Factors that hindered coping: No report Uncertainty of future Negative news regarding disease status Waiting prior to surgery
(%)
(%)
43 33 24
38 25 25 21
36 3 13 0
8 38 9 22
15
The analysis of the WCCL coping data demonstrated a striking relationship between the use of escape and avoidance coping and psychological distress both before and after surgery (see Table IV). The other coping strategies, however, failed to demonstrate statistically significant relationships with distress either presurgically or postsurgically . Prior to surgery, escape and avoidance scale scores showed positive relationships with the obsessive-compulsive behavior, interpersonal sensitivity, hostility, psychoticism, and global severity SCL-90-R scales. Postsurgically , escape and avoidance coping was even more clearly associated with distress. Relationships were found between escape and avoidance coping and all the SCL-90-R scales except for the somatization, hostility, and paranoid ideation scales. In other words, the greater the frequency with which escape and avoidance coping was used, the greater the psychological distress. Surprisingly, no coping strategies were significantly associated with lower distress.
DISCUSSION Perhaps the most striking result of the present investigation was that spouses exhibited higher levels of distress than did the cancer patients undergoing surgical treatment. While the basis for this difference must be studied empirically, several possible interpretations are suggested. Responses to the Final Interview Questionnaire, for example, indicated that spouses were looking beyond the surgical event to the future course of the illness itself, while patients appeared to experience some resolution of their distress after surgery. Spouses maintained their higher levels of distress in the face of an uncertain future. A second, though not necessarily mutually exclusive hypothesis, is that spouses experienced heightened feelings of helplessness in addition to the sadness and fear experienced by many patients. It is especially difficult to watch someone you love endure the pain and discomfort often associated with cancer treatment. Helplessness may have complicated the spouses'
TABLE 1V. Correlations Between Escape-Avoidance Coping Scores and Scores on the SCL-90-R SCL-90-R scales Somatization Obsessive-compulsive Interpersonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoid ideation Psychoticism Global severity Positive symptom distress index
Presureery"
Postsurgerv"
.I7 .35* .42**
.36 .59** 52"* .60** .51** .26 .49"* .26
.30 .25 .35" .30 .28 .33 .34* .23
.4h**
.60*" . I3
"N = 36. hN = 28. *P < .05. * * P < .01
responses and contributed to the higher levels of psychological distress reported in the spouse group. Appraisal was found to be an essential factor in understanding individual reactions to stressful events. In both the presurgical and postsurgical periods, spouses who appraised their partners' surgeries as more stressful were more symptomatic than spouses who appraised the surgeries as benign or positive. Interesting relationships were also observed between coping and distress in spouses. Surprisingly, no coping strategies were associated with lower distress. The escape and avoidance coping response was associated with greater psychological distress in spouses both prior to and following the surgery. This finding extends previous research that found that avoidant coping strategies were maladaptive for patients coping with cancer [24]. In a similar vein, spouses of recently discharged patients who engaged in escape-avoidance based coping exhibited higher levels of depression and greater conflict with friends and family members [ 2 5 ] . Other studies, however, found avoidant coping responses to be adaptive in medical situations where there is little opportunity for control [26]. Further research is needed to clarify the factors inherent in situations where avoidant strategies are adaptive as opposed to maladaptive. The intensity of the distress reported by the spouses investigated herein suggests that spouses of cancer surgery patients are in need of attention and support. Hospitals with inpatient facilities should be encouraged to provide spouses with ongoing support groups, thus enabling the spouses to obtain support in a structured and consistent manner. Interventions could be directed toward developing new and flexible coping strategies, identifying support systems, and providing emotional support. Spouses need to be given adequate time and opportunity to ask questions about both the disease and
Adjustment to Cancer Surgery
treatment. Information that is honest and direct allows realistic planning for the future. Extending hope, as appropriate, is critical [27]. In conclusion, the present study empirically investigated how spouses cope with and adjust to their mates’ cancer surgery. Because cancer is a complex disease process, and coping is best studied with respect to a specific event, this study focused on the process by which spouses appraise and cope with their partners’ surgical treatment. In addition to focusing on a specific situation (i.e., surgery) in the usually long treatment process, the present study also examined patients’ and spouses’ responses at a consistent point prior to and following the surgery. The results of this investigation clearly indicated that for both the presurgical and postsurgical periods, spouses of cancer surgery patients exhibited significantly greater distress than the patients themselves. Furthermore, while patients’ psychological distress decreased over the presurgery to postsurgery period, spouses’ levels remained relatively constant. Given these and related findings [ 14,151, spouses of patients undergoing surgical treatment appear to be an underacknowledged population at risk.
ACKNOWLEDGMENTS The authors would like to thank Harold 0. Douglas, Jr., M.D., and Margaret Bluff, R.N., for their help in conducting this study. REFERENCES 1, Friedenbergs I, Gordon W, Hubbard M, Levine L, Wolf C , Diller
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