Psychological distress in couples dealing with colorectal cancer: Gender and role differences and intracouple correspondence

Transcription

1 465 British Journal of Health Psychology (2004), 9, q 2004 The British Psychological Society Psychological distress in couples dealing with colorectal cancer: Gender and role differences and intracouple correspondence Jolanda Tuinstra 1 *, Mariët Hagedoorn 1, Eric Van Sonderen 1, Adelita V. Ranchor 1, Geertrudis A. M. Van den Bos 2, Chris Nijboer 3 and Robbert Sanderman 1,4 1 Northern Centre for Healthcare Research, University of Groningen, The Netherlands 2 RIVM, Centre for Healthcare Research, Bilthoven, and Academic Medical Centre, University of Amsterdam, The Netherlands 3 NIGZ, Woerden, The Netherlands 4 Department of Clinical Psychology, University of Groningen, The Netherlands Objectives. This longitudinal study examined patterns of psychological distress in couples facing colorectal cancer within 6 months after surgery. In addition, correspondence in psychological distress was investigated between patients and their spouses, taking into account the gender of the patient. Method. The study had a longitudinal design, involving three assessment points; (T1) within 2 weeks after surgery, (T2) 3 months after baseline and (T3) 6 months after baseline. At T1, respondents were asked to indicate how they felt during the week prior to surgery. At T2 and T3, respondents reported their feelings during the preceding week. Psychological distress was measured using the 20-item Center for Epidemiologic Studies Depression Scale (CES-D) in 137 couples. Results. Concerning the week prior to surgery, females reported more distress being a patient, whereas males reported more distress being a spouse. In comparison with a reference group, females as well as males, regardless of their role, showed increased levels of psychological distress prior to surgery. At 3 and 6 months following surgery, increased levels of distress continued to exist in females, whereas males distress returned to normal levels. Neither within female-patient couples, nor within malepatient couples, were associations between patients and spouses distress found. Conclusion. We demonstrated a considerable impact of the cancer diagnosis on both female and male patients and their spouses before and 3 months after surgery. Six months after surgery, females, in particular, appear to be vulnerable to distress. * Correspondence should be addressed to Jolanda Tuinstra, Northern Centre for Healthcare Research, Department of Public Health and Health Psychology, University of Groningen, PO Box 196, 9700 AD Groningen, The Netherlands ( j.tuinstra@med.rug.nl).

2 466 Jolanda Tuinstra et al. Several studies provide compelling evidence that cancer affects the psychological wellbeing of both patients and their spouses (for an overview, see Manne, 1998). However, most research on couples adjustment to cancer focused on female patients with breast cancer and their male spouses and, consequently, confounded gender (female vs. male) and role (patient vs. spouse) effects. In other words, these studies cannot answer the question whether being the patient rather than the spouse is different for women and men. In addition, most studies lack a reference group which is needed to examine whether possible gender differences in distress in patients and spouses are associated with the cancer experience, over and above what might be observed for couples in general. Furthermore, in the literature, it is assumed that when patients are distressed their spouses are distressed as well (e.g. Carlson, Bultz, Speca, & St. Pierre, 2000; Manne, 1998). However, the correspondence between patients and spouses distress within couples has been understudied. It is important to note that a comparable level of distress in patients and spouses at a group level does not implicate correspondence within couples. This study aimed to address these issues and examined couples adjustment to colorectal cancer within half a year after surgery, addressing both gender and role differences. Psychological distress in patients and spouses will be compared with distress in a reference group from the normal population. In addition, we investigated the association between psychological distress in patients and psychological distress in their spouses, taking into account the gender of the patient. Gender and role effects on psychological distress Studies that have looked into gender and role differences with respect to dealing with cancer have revealed that it is very important to take the combination of gender and role into account. Levels of psychological distress seem to be influenced by being male or female and being the patient or spouse (four combinations are possible). However, the specific conclusions vary considerably. In a cross-sectional study, Hagedoorn, Buunk, Kuijer, Wobbes, and Sanderman (2000) assessed psychological distress (with the CES-D) in 173 couples (two samples) who had been confronted with the diagnosis of cancer (various types) several years earlier (on average, 2.8 and 5.0 years respectively). They showed that being the patient or the spouse did not make a difference in terms of psychological distress for women, whereas it did make a difference for men. Compared with female controls, both female patients and female spouses perceived more distress. In contrast, male patients perceived more distress than their healthy controls, whereas male spouses of patients and male controls did not differ. Hagedoorn et al. (2000) argued that these differences between women and men are in line with the idea that women are more relationship-oriented and, therefore, more strongly influenced by the condition of their spouse than are men. A similar pattern has been found in the context of other chronic diseases (Hagedoorn et al., 2001; Rohrbaugh et al., 2002). In addition to a role effect with respect to distress in men, a gender effect was found among spouses, indicating that female spouses perceived more distress than male spouses (Hagedoorn et al., 2000). Female and male patients did not differ with respect to distress. In a homogeneous group of 56 couples dealing with colorectal cancer, Northouse, Mood, Templin, Mellon, and George (2000) found role as well as gender effects. More precisely, both female and male spouses reported more emotional distress

3 Psychological distress in couples facing colorectal cancer 467 (as measured with the BSI) than did patients of the same gender. Furthermore, females reported more distress than males, among patients as well as spouses. Female spouses were particularly vulnerable to the negative effects of the illness. One week after diagnosis, they reported the highest emotional distress scores, which remained at a higher level 1 year after diagnosis. One year after diagnosis, the difference between male spouses and male patients was very small; probably non-significant, but a test was not presented. Baider and her colleagues published a number of studies on gender and role differences with respect to dealing with cancer, but with inconsistent findings (Baider & Denour, 1999; Baider, Koch, Esacson, & Kaplan De-Nour, 1998; Baider, Perez, & Kaplan De-Nour, 1989; Baider, Walach, Perry, & Kaplan De-Nour, 1998). In one study of 60 couples dealing with various types of cancer, who filled out the BSI, at least 20 months after diagnosis, no gender and role differences were found (Baider, Walach et al., 1998). In another small cross-sectional study of 39 patients with colon cancer and their spouses, female patients reported higher distress (BSI) than female spouses, but male spouses reported higher distress than male patients (Baider et al., 1989). In this latter sample, distress was measured, on average, 3 years post surgery. The authors concluded that male patients cope better than female patients, but male spouses fare far worse than female spouses (cf. Baider & Denour, 1999). However, a longitudinal study of 133 couples with heterogeneous types of cancer showed that the psychological distress of female spouses was highest, even higher than that of female patients (Baider, Koch et al., 1998). In line with Hagedoorn et al. (2000), for males, the role of patient involved more distress than the role of spouse. This pattern was found shortly after diagnosis as well as 18 months later. Although a general conclusion cannot be drawn, four interesting similarities in the foregoing studies are notable. First, female patients reported more distress than male patients only in the homogeneous cancer (i.e. colon cancer) samples (Baider et al., 1989; Northouse et al., 2000). Second, in line with the literature on caregiving (e.g. Lutzky & Knight, 1994; Miller & Cafasso, 1992; Rohrbaugh et al., 2002; Rose-Rego, Strauss, & Smyth, 1998), three studies (four samples) revealed more distress for female spouses than for male spouses of patients with cancer (Baider, Koch et al., 1998; Hagedoorn et al., 2000; Northouse et al., 2000). Third, female spouses were more distressed than female patients only in the two longitudinal studies with assessments no later than 19 months after diagnosis (Baider, Koch et al., 1998, Northouse et al., 2000). Fourth, male spouses reported more psychological distress than male patients only in the homogeneous cancer groups (Baider et al., 1989; Northouse et al., 2000), whereas male patients reported higher distress than spouses in two of the four heterogeneous cancer groups (Baider, Koch et al., 1998; Hagedoorn et al., 2000). Based on these four observations, we might expect to find: (i) female patients to be more distressed than male patients, (ii) female spouses to be more distressed than male spouses, (iii) female spouses to be more distressed than female patients, and (iv) male spouses to be more distressed than male patients. Correspondence in psychological distress within couples The existence of correspondence between patients and partners distress within couples appears to be an overall and strongly incorporated assumption. Even reviews that report inconclusive empirical findings adopt this assumption and state that if one

4 468 Jolanda Tuinstra et al. partner is distressed, the other is likely to respond in a similar manner (Manne, 1998, p. 193; cf. Carlson et al., 2000). Some studies that looked into this relationship support the idea that higher levels of distress in patients are associated with higher levels of distress in spouses (Baider & Denour, 1999; Northouse, Dorris, & Charron-Moore, 1995). Furthermore, Northouse, Templin, Mood, and Oberst (1998) found some evidence for correspondence in psychological distress in 58 couples dealing with breast cancer. Patients and spouses were classified as either high or low in distress based on whether their scores were above or below the median score of the patient and spouse group, respectively. About 30% of the couples were categorized in the high high distress group and another 30% were categorized in the low low distress group. In a substantial 40% of the couples, no correspondence between patients and spouses distress was found. Other studies revealed no evidence for an association between patients and spouses distress. For example, Northouse et al. (2000) found non-significant correlations between patients and spouses distress scores shortly after the diagnosis of colorectal cancer and 1 year after surgery. Similarly, Ybema, Kuijer, Buunk, De Jong, and Sanderman (2001) found a non-significant correlation between the levels of distress in patients with various types of cancer and those of their spouses. Noteworthy, no study examined whether the association between patients and spouses distress depends on the gender of the patient. Possible explanations for inconsistent findings The inconsistent findings about both gender and role differences and correpondence in distress within couples can perhaps be explained by differences in study design (cross-sectional vs. longitudinal), assessment points (shortly after diagnosis vs. years after diagnosis), sample (homogeneous vs. heterogeneous) and instruments (BSI vs. CES-D). The current study In light of prior findings presented above, our study incorporates a number of strengths for the advancement of the literature on gender differences and intra-couple associations in distress among cancer patients and their spouses. First, this study examines longitudinal patterns of psychological distress over the course of about 6 months after surgery, which is considered to reflect the period of acute crisis in which intimate partners are thrown together. A second strength of this study is the composition of the sample. More specifically, to exclude that potential gender and role differences can be ascribed to differences in cancer diagnoses, we confined our focus to colorectal cancer, which has a similar incidence for women and men. In contrast to previous studies on couples dealing with colorectal cancer (Baider et al., 1989; Northouse et al., 2000), our longitudinal study had a large sample size, which provides adequate complete data for couples at three assessments. A third strength of this study is the gender-specific reference group, which is crucial to study whether possible gender differences in distress in patients and spouses are associated with the cancer experience ðn ¼ 6042Þ: We assessed psychological distress with the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977). This reliable and valid instrument has been used in large representative Dutch surveys, which provide our study a reference group from the normal population (Bouma, Ranchor, Sanderman, & Van Sonderen, 1995). In their analysis of eight studies, Bouma et al. concluded that the CES-D is not related to age. In contrast, the CES-D has

5 Psychological distress in couples facing colorectal cancer 469 been found to be related to gender, indicating that females score significantly higher than males (Bouma et al., 1995). The following specific research questions were addressed: (1) Do female patients perceive more psychological distress than male patients at three assessment points within 6 months after surgery (Q1)? (2) Do female spouses report more distress than male spouses within 6 months after surgery (Q2)? (3) Do female and male spouses perceive more distress than patients of the same gender due to the cancer experience within 6 months after surgery (Q3)? (4) Do the levels of psychological distress in patients and their spouses correspond within female-patient couples and male-patient couples, respectively, within 6 months after surgery (Q4)? Method Procedure and participants To answer the research questions, we used data from the research project entitled Caregiving of Spouses of Cancer Patients (CASPA, e.g. Nijboer et al., 2000; Nijboer, Tempelaar, Triemstra, Van den Bos, & Sanderman, 2001; Nijboer, Triemstra, Tempelaar, Sanderman, & Van den Bos, 1999). This longitudinal study was conducted in cooperation with 10 hospitals in the Netherlands. Newly diagnosed colorectal patients who recently underwent surgery were selected. There were two other selection criteria: a survival prognosis of at least 6 months, and living with a spouse. The spouse was defined as the person who was married or lived as married with the patient, and who resided in the patient s household. Data were collected at three assessment points. The baseline measurement (T1) took place within 2 weeks after patient s surgery, either in the hospital or at home. This measurement reflects the period of an acute crisis. The second measurement (T2) took place at home 3 months after baseline, and the third measurement (T3) again 3 months later (i.e. 6 months after baseline). The third measurement, 6 months after surgery, reflects the end of the acute crisis, when most adjuvant treatments have been completed. T2 has been scheduled halfway through the 6-month follow-up in order to assess the course of the acute crisis after diagnosis. Separately, patients and spouses were interviewed face-to-face by trained research assistants using structured interview questionnaires. During the interview, patients and spouses completed a self-report questionnaire. Of the 236 eligible patients and spouses, informed consent was obtained from 179 (76%) at the outset of the study. No selective response bias was found between participating patients and non-participants with respect to age, gender, diagnosis and region (Nijboer et al., 2000). This study used data from 137 heterosexual couples, for which the data were complete for the three assessments (77% of 179). Loss to followup occurred for the following reasons: serious illness of the patient, refusal to report for follow-up, death of the patient and incomplete data. For both patients and spouses, no differences were found between the initial sample ðn ¼ 179Þ and the final sample ðn ¼ 137Þ with respect to age, gender, adjuvant treatment, educational level, work situation and psychological distress at T1. Levels of psychological distress of the group of respondents who participated only at T1 did not significantly differ from the level of distress of respondents who completed all three waves.

6 470 Jolanda Tuinstra et al. Measures Descriptive characteristics of patients and spouses including socio-demographic characteristics were assessed during face-to-face interviews. Medical characteristics were collected from the medical files. Psychological distress was measured with the 20-item CES-D (Bouma et al., 1995; Radloff, 1977). The CES-D consists of a 20-item self-report scale that taps into depressive symptoms during a specific period. At baseline (T1), shortly after surgery, both patients and spouses were asked to answer the items referring to the week preceding surgery. We refer to T1 as the week prior to surgery. At T2 and T3, they were asked to answer the items for the situation during the past week. The theoretical range of the scores runs from 0 to 60, with higher scores indicating a higher level of depressive symptoms. The internal consistencies of this scale were.91 and.88 at T1,.88 and.92 at T2, and.91 and.90 at T3 for patients and spouses, respectively. The scores for the reference group are 9 and 7 for females and males, respectively (Bouma et al., 1995). Analyses We conducted t-tests to examine (Q1) differences between female patients and male patients, (Q2) differences between female spouses and male spouses and (Q3) differences between female patients and female spouses, on the one hand, and female references, on the other hand. Similar analyses were performed for men (Q3). In order to answer the fourth question (Q4), correlation coefficients were calculated to examine the association between patients and spouses psychological distress. At each of the three assessment points, these associations were computed for the total sample, femalepatient couples and male-patient couples. Results Sample characteristics Table 1 presents descriptive characteristics of the 137 couples who participated at all three assessments. There were more couples with male patients ðn ¼ 89Þ than couples with female patients ðn ¼ 48Þ: More than a third of both female and male patients had a stoma (37.5 and 40.4% respectively). Some patients received adjuvant treatment; more females than males received radiotherapy (25.0 vs. 11.2%), more males than females received chemotherapy, sometimes in combination with radiotherapy (16.9 vs. 8.4%). These differences in treatment between males and females are, however, not significant. In addition, no differences were found in psychological distress between the treatment groups. There was considerable variation in waiting time between diagnosis and surgery. The mean waiting time was about 1 month. Patients reported to have had complaints for, on average, more than 6 months ðsd ¼ 9:9Þ before diagnosis. Gender and role differences in dealing with colorectal cancer Figure 1 and Table 2 show the average levels of psychological distress at three assessment points for all four groups: female and male patients and their male and female spouses. First, we examined gender differences in psychological distress for patients at three assessment points. Both Fig. 1 and Table 2 show higher levels of distress for female than male patients during the 6 months after diagnosis. The increased levels of distress in female patients, compared with male patients, were significant higher at T1, the

7 Psychological distress in couples facing colorectal cancer 471 Table 1. Descriptive characteristics of patients and spouses who participated at all three measurement points ðn ¼ 137Þ Males Females Patient characteristics Gender 89 (65%) 48 (35%) Mean age 60.7 (SD 10.8) 56.3 (SD 8.8) Education Low 22 (24.7%) 12 (25.0%) Middle 47 (52.8%) 24 (50.0%) High 20 (22.5%) 12 (25.0%) Employed, yes 24 (27.0%) 12 (25.0%) Stoma 36 (40.4%) 18 (37.5%) Adjuvant treatment None 64 (71.9%) 32 (66.7%) Radiotherapy 10 (11.2%) 12 (25.0%) Chemotherapy 8 (9.0%) 3 (6.3%) Both radiotherapy and chemotherapy 7 (7.9%) 1 (2.1%) Duration of complaints, Mean months 8.2 (SD 9.6) 7.9 (SD 11.3) Number of days between diagnosis and surgery 29.1 (SD 28.1) 33.8 (SD 36.1) Spouse characteristics Gender 48 (35%) 89 (65%) Mean age 59.4 (SD 10.6) 58.8 (SD 11.3) Education Low 9 (18.8%) 19 (21.3%) Middle 28 (58.3%) 48 (53.9%) High 11 (22.9%) 22 (24.7%) Employed, yes 15 (31.3%) 19 (21.3%) week prior to surgery, tð135þ ¼5:78; p, :000; and 3 and 6 months after surgery, tð135þ ¼4:02; p, :000 and tð135þ ¼4:01; p, :000; respectively. Female patients appeared to be more distressed than male patients, which is a positive answer to our first research question (Q1). Figure 1. Average scores of psychological distress for female and male patients and for female and male spouses at three assessment points. Note. for women the normscore ¼ 9, for men the normscore ¼ 7.

8 472 Jolanda Tuinstra et al. Table 2. Means and (SD) of psychological distress for female and male patients and female and male spouses at T1, T2 and T3 T1 T2 T3 M (SD) M (SD) M (SD) Patients Female ðn ¼ 48Þ 19.2 (10.9) 13.4 (9.5) 12.7 (9.4) Male ðn ¼ 89Þ 9.5 (8.4) 7.7 (6.8) 6.8 (7.2) Spouses Female ðn ¼ 89Þ 14.1 (9.2) 11.3 (10.3) 10.3 (8.7) Male ðn ¼ 48Þ 13.6 (9.3) 7.8 (6.9) 7.3 (7.4) Second, we examined gender differences in psychological distress for spouses at the three assessment points. At T1, the week prior to surgery, female and male spouses report similar levels of distress. At 3 and 6 months after surgery, female spouses appeared to be more distressed than male spouses, tð135þ ¼2:16; p, :05 and tð135þ ¼2:00; p, :05; respectively. These findings mainly affirm our second research question (Q2). Third, we examined role effects for females and compared both female patients and spouses with female references. At baseline, female patients reported significantly higher levels of psychological distress than female spouses, tð135þ ¼2:91; p, :01: However, at T2 and T3, the difference in psychological distress ceased to exist, tð135þ ¼1:13 and tð135þ ¼1:50 at T2 and T3, respectively. Importantly, women facing colorectal cancer either as a patient or as a spouse perceived higher levels of psychological distress than women in a reference group from the normal population (Bouma et al., 1995). The increased level of distress, compared with these references, was pointedly manifest at T1, the week prior to surgery, tð47þ ¼6:46 and tð88þ ¼5:17; p, :001 for patients and spouses, respectively. It remained manifest 3 and 6 months after surgery, tð47þ ¼3:21; p, :01 and tð88þ ¼2:15; p, :05 at T2 for patients and spouses, respectively, and tð47þ ¼2:70; p, :01 for patients at T3. Six months after surgery, the difference in distress between female spouses and the reference group did not reach significance, tð88þ ¼1:36: The picture for males is quite different than for females. At baseline, male spouses reported considerably higher levels of psychological distress than male patients, tð135þ ¼22:62; p, :01: In comparison with male references, both male patients and male spouses perceived significantly more psychological distress, tð88þ ¼2:78; p, :01 and tð47þ ¼4:92; p, :001 for patients and spouses, respectively. Three and 6 months after surgery, there was no difference in psychological distress between male patients and male spouses ðt-values, 1Þ: Their levels of distress had returned to levels similar to those of their references (t-values # 1). In sum, at baseline, we found role differences for women as well as men: females perceived more distress being a patient, whereas males perceived more distress being a spouse. In comparison with a reference group of the normal population, females as well as males, regardless of their role, showed increased levels of psychological distress prior to surgery. At 3 and 6 months following surgery, increased levels of distress continued to exist in females, whereas males returned to normal levels. Thus, our third research question (Q3) can be answered positively for males, but only prior to surgery; male spouses were more distressed than male patients. Furthermore, 3 months after surgery,

9 Psychological distress in couples facing colorectal cancer 473 female spouses were more distressed than female references, whereas male spouses were not more distressed than male references, suggesting that female spouses were more distressed due to the cancer experience than male spouses. Correspondence between patients and spouses psychological distress within couples The fourth research question (Q4) was whether there is an association between patients and spouses psychological distress at the three assessment points. Both within female-patient couples and within male-patient couples, females perceived more distress than males (see Fig. 1). Given this pattern, at a group level, it appears that a decrease in distress in the patient is associated with a decrease in distress in the spouse, and vice versa. However, Table 3 shows non-significant associations between patients and spouses distress for the total sample, and for male-patient (except at T1) and femalepatient couples, separately. Table 3. Intracouple correlations for the total sample, male-patient couples and female-patient couples at T1, T2 and T3 T1 T2 T3 All couples ðn ¼ 137Þ Female-patient couples ðn ¼ 48Þ Male-patient couples ðn ¼ 89Þ.23* Additional analyses about probable cases of depression ðces D score $ 16Þ underscore the weakness of the assumption of correspondence within couples. In malepatient couples, similar numbers of couples were found in which patient s and spouse s distress does correspond and couples in which they do not correspond being a possible case. For female-patient couples the same conclusion was drawn at T1. At 3 and 6 months after surgery, however, patients and spouses in female-patient couples react more similar in terms of being a possible case of depression. 1 Discussion Our study revealed four important findings. First, within 6 months after surgery, female patients perceive more psychological distress than male patients (Q1). Second, 3 and 6 months after surgery female spouses perceive more psychological distress than male spouses (Q2). Third, prior to surgery, role differences in distress were found for females as well as males. At this time, females perceived more distress when they were the patient, whereas males perceived more distress when they were the spouse (Q3). Fourth, within couples, patients and spouses did not react necessarily in the same way. The assumption that distress in patients is associated with distress in their spouses is only partly confirmed by our data (Q4). 1 Four dyadic combinations are possible: (i) both patient and spouse are a non-case, (ii) the patient is a possible case and the spouse is not, (iii) the patient is a non-case and the spouse is a possible case, and (iv) both patient and spouse are possible cases. In the first and last combinations mentioned, there is correspondence between patient and spouse. We examined the correspondence within couples at the three assessment points. In male-patient couples, we found no significant Pearson chisquares, indicating an equal distribution over the four dyadic combinations. At T1, for female-patient couples, the same conclusion can be drawn. At T2 and T3 we found that patients and spouses psychological states correspond more often than they differ. Both at T2 and T3, significant associations were found, x 2 ð1þ ¼7:41; p, :01 and x 2 ð1þ ¼5:50; p, :05; respectively.

10 474 Jolanda Tuinstra et al. The finding that, in the week prior to surgery, male spouses were more distressed than male patients is in line with other studies in the context of colon cancer (Baider et al., 1989; Northouse et al., 2000). However in these studies, this role effect was not only found shortly after diagnosis, but also quite long after diagnosis. In contrast to other studies that assessed distress within 19 months after diagnosis (Baider, Koch et al., 1998; Northouse et al., 2000), our study did not find female spouses to be more distressed than female patients. At baseline, female patients reported more distress than female spouses. Similarly to Hagedoorn et al. (2000) and Baider, Walach et al. (1998), both studies with heterogeneous samples and measurements long after diagnosis, we found no differences between female patients and spouses 3 and 6 months after surgery. Our finding that female spouses reported more distress than male spouses is in line with some previous findings on couples dealing with cancer (Baider, Koch et al., 1998; Hagedoorn et al., 2000; Northouse et al., 2000), as well as with findings on caregiver distress in the context of other chronic diseases (e.g. Lutzky & Knight, 1994; Miller & Cafasso, 1992; Rohrbaugh et al., 2002; Rose-Rego et al., 1998). The comparison with the reference group was crucial because it suggests that the cancer experience is important in this gender difference: having a partner with cancer causes distress in female spouses, whereas it causes distress in male spouses only shortly after diagnosis. Shortly after diagnosis, both female and male patients reported more distress than their respective reference group. However, at 3 and 6 months following surgery, increased levels of distress continued to exist in female patients, whereas males distress returned to normal levels. As in prior studies among couples dealing with colon cancer, our findings suggest that female patients are more distressed due to cancer than male patients (Baider et al., 1989; Northouse et al., 2000). Although the average level of distress over time seemed to correspond between patients and spouses at a group level, the association between patients and spouses level of distress was very low at all assessment points, regardless of the gender of the patient. This latter finding is in line with Northouse et al. (2000) and Ybema et al. (2001) and suggests that other factors, such as individual differences in personality and coping behaviour, rather than partner s distress, may be predictive of individuals distress. The mutual influence within a couple, however, is evident and complex, as shown for example by Northouse et al. (2001) predicting patient s and spouse s psychosocial adjustment to breast cancer during the first year following diagnosis. Patient s level of adjustment had a significant direct effect on the partner s adjustment at 1 year after diagnosis, and vice versa. To the best of our knowledge no studies examined the effect of correspondence at Tx in distress within a couple on individual outcomes such as marital adjustment or psychological adaptation at Tx þ 1. Such studies could bring us a step forward in our understanding of dyadic coping with cancer. How can our main findings be interpreted? First, why is, shortly after diagnosis, the role of patient rather than the role of spouse particularly associated with distress in women, whereas the role of spouse rather than the role of patient is particularly associated with distress in men? The period after diagnosis and before surgery is characterized by a high degree of uncertainty. Not until the evaluation of surgery can some clarity be given about further treatment and prognosis. In particular, the time before hospital admission is perceived as uncertain and unpredictable, maybe even more so by spouses than by patients (Northouse, 1989). Many spouses of women with breast cancer reported that the diagnostic phase (prior to surgery) was the most stressful time for them (Northouse, 1989). Spouses of patients with cancer often

11 Psychological distress in couples facing colorectal cancer 475 observe the patients suffering, while they are unsure of how to help the patient and feel unprepared for dealing with the patients reactions. Nijboer et al. (2001) concluded that caregivers with decreasing levels of control were at greater risk for developing a clinical depression, especially those caregivers who perceived their caregiving tasks more negatively. Unfortunately, very little is known about gender and role differences in changes in feelings of control after a cancer diagnosis and its consequences on distress. It might be that female patients perceive a stronger decrease in feelings of control than female spouses, whereas male spouses perceive a stronger decrease in control than male patients. Research is needed to illuminate this issue. Second, why does having a partner with cancer cause distress in female spouses during the first 6 months after surgery, whereas it causes distress in male spouses only shortly after diagnosis? Several explanations have been put forward in the literature (e.g. Hagedoorn et al., 2000; Hagedoorn, Sanderman, Buunk, & Wobbes, 2002; Lutzky & Knight, 1994; Rose-Rego et al., 1998). For example, in a review of 14 studies, Miller and Cafasso (1992) concluded that female and male caregivers did not differ with respect to total involvement in care and money management tasks, but female caregivers were found to be more likely to perform personal care tasks than male caregivers, which may be associated with the gender difference in caregiver distress. Lutzky and Knight (1994) found partial support for the psychological explanation that men might be less likely to attend to their emotions and, therefore, less likely to express them than women. However, the current study showed that males do report distress shortly after diagnosis and, thus, do seem to be attentive to their emotions. Furthermore, previous research suggests that differences in distress between female and male caregivers cannot be explained by a greater willingness to report psychological distress (Mirowsky & Ross, 1995). Recently, Hagedoorn et al. (2002) forwarded a psychological explanation based on sex differences in role identity and identity-relevant stressors. Previous studies suggest that caregiving is a more central aspect of females identity than of males identity (Acitelli & Young, 1996; Aube & Koestner, 1995; Koestner & Aube, 1995; Miller, 1990; Lang-Takac & Osterweil, 1992). Females tend to feel more responsible for the well-being of others, often at severe cost to their own emotional stability (Coyne & Fiske, 1992). Because, stressors that threaten a salient and central part of an individual s identity (i.e. identity-relevant stressors) are expected to cause particular distress (Thoits, 1991), Hagedoorn et al. (2002) hypothesized that a low caregiving performance is more strongly associated with psychological distress in women than in men. In line with this hypothesis, these authors found that female spouses of patients with cancer reported more distress when they felt less rather than more competent at caregiving. When female spouses felt competent at caregiving, they reported levels of distress as low as those of male spouses. Some limitations of the current study need to be mentioned. First, and most obviously, at baseline, the introduction of the CES-D was somewhat different than usual and different from the other two measurements. At baseline, participants were asked to answer the items for the situation during the week preceding hospital admission. This retrospective way of asking might have induced recall bias or participants answers may reflect their mood at the time of assessment rather than during the period before hospital admission. However, the questions were the same for all participants and, thus, potential bias is unlikely to have affected the differences found between groups. However, we do have to be cautious when comparing participants T1 scores with those of the reference groups.

12 476 Jolanda Tuinstra et al. A second limitation concerns the study period. A possible explanation for the nonsignificant relationships between patients and spouses distress might be that the impact of distress in patients only affects a spouse after longer than 6 months (Northouse et al., 2000, 2001). Our current prospective study with a longer follow-up will examine this possible explanation. A third limitation concerns the generalizability of this study. Because the inclusion of participants was restricted to patients with a fairly good prognosis, it is not known whether our findings can be generalized to patients with a poor prognosis or to patients in a terminal phase of the disease. Conclusion This study aimed to shed light the inconsistent findings with respect to gender and role effects in adjustment to cancer. Therefore, we combined the strengths of previous studies, that is, one cancer type with a high incidence for women and men, a considerable sample size, a reference group, and several measurements within the period of acute crises, that is, within 6 months after surgery. We demonstrated a considerable impact of the cancer diagnosis on both female and male patients and their spouses. However, somewhat longer after surgery, the findings suggest that females are particularly vulnerable to distress. Implications for application and public policy Colorectal cancer is a major public health problem. More than a quarter of deaths in the Netherlands are caused by cancer. Of these, colorectal cancer is the second cause of death for women and the third for men. Every year about 8000 incident cases are diagnosed, spread equally among men and women. This health problem reaches beyond mortality and incident cases, as our results highlight. Both patients and spouses are subject to the health problem. Clinicians should not only devote their psychosocial care to patients, but also be aware that spouses may be distressed as well, both men and women. Particularly during the diagnostic phase and hospital admission, they deserve particular attention. During later check-ups, women in particular, both patients and spouses, seem to be in need of psychosocial care. Nurse specialists could fill this need. In recent research, preliminary interview data suggest that shortly after diagnosis, mamma care nurse specialists experience their role to be important with respect to listening, comforting, explaining and repeating. Nurse specialists are well equipped for this psychosocial task and their participation should therefore be included in the diagnostic protocol. Acknowledgement This research was funded by a grant from the Dutch Cancer Society (AMC & NKB ). References Acitelli, L. K., & Young, A. M. (1996). Gender and thought in relationships. In G. J. O. Fletcher & J. Fitness (Eds), Knowledge structures in close relationships: A social psychological approach (pp ). Mahwah, NJ: Erlbaum. Aube, J., & Koestner, R. (1995). Gender characteristics and relationship adjustment: Another look at similarity complementarity hypotheses. Journal of Personality, 63,

13 Psychological distress in couples facing colorectal cancer 477 Baider, L., & Denour, A. K. (1999). Psychological distress of cancer couples: A levelling effect. New Trends in Experimental and Clinical Psychiatry, 15, Baider, L., Koch, U., Esacson, R., & Kaplan De-Nour, A. (1998). Prospective study of cancer patients and their spouses: The weakness of marital strength. Psycho-Oncology, 7, Baider, L., Perez, T., & Kaplan De-Nour, A. (1989). Gender and adjustment to chronic disease. A study of couples with colon cancer. General Hospital Psychiatry, 11, 1 8. Baider, L., Walach, N., Perry, S., & Kaplan-De-Nour, A. (1998). Cancer in married couples: Higher or lower distress? Journal of Psychosomatic Research, 45, Bouma, J., Ranchor, A. V., Sanderman, R., & Van Sonderen, E. (1995). Het meten van van symptomen van depressie met de CES-D. Een handleiding (Internal Report). [Assessment of symptoms of depression with the CES-D. A manual]. Groningen: University of Groningen, Northern Centre for Healthcare Research. Carlson, L., Bultz, B., Speca, M., & St. Pierre, M. (2000). Partners of cancer patients: I. Impact, adjustment, and coping across the illness trajectory. Journal of Psychosocial Oncology, 18, Coyne, J. C., & Fiske, V. (1992). Couples coping with chronic illness. In T. J. Akarnatsu, J. C. Crowther, S. C. Hobfoll, & M. A. P. Stevens (Eds), Family health psychology (pp ). Washington, DC: Hemisphere. Hagedoorn, M., Buunk, B. P., Kuijer, R. G., Wobbes, Th., & Sanderman, R. (2000). Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. Psycho-Oncology, 9, Hagedoorn, M., Sanderman, R., Buunk, B. P., & Wobbes, Th. (2002). Failing in spousal caregiving: The Identity-Relevant Stress hypothesis to explain sex differences in caregiver distress. British Journal of Health Psychology, 7, Hagedoorn, M., Sanderman, R., Ranchor, A. V., Brilman, E. I., Kempen, G. I. J. M., & Ormel, J. (2001). Chronic illness in elderly couples: Are wives more responsive to their partners health condition than are husbands? Journal of Psychosomatic Research, 51, Koestner, R., & Aube, J. (1995). A multifactorial approach to the study of gender characteristics. Journal of Personality, 63, Lang-Takac, E., & Osterweil, Z. (1992). Separateness and connectedness: Differences between the genders. Sex Roles, 27, Lutzky, S. M., & Knight, B. G. (1994). Explaining gender differences in caregiver distress: The roles of emotional attentiveness and coping styles. Psychology and Aging, 9, Manne, S. (1998). Cancer in the marital context: A review of the literature. Cancer Investigation, 16, Miller, J. B. (1990). The development of women s sense of self. In C. Zanardi (Ed.), Essential papers on the psychology of women. Essential papers in psychoanalysis (pp ). New York: University Press. Miller, B., & Cafasso, L. (1992). Gender differences in caregiving: Fact or artifact? The Gerontologist, 32, Mirowsky, J., & Ross, C. E. (1995). Sex differences in distress: Real or artifact? American Sociological Review, 60, Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R., & Van den Bos, G. A. M. (1999). Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer, 86, Nijboer, C., Triemstra, M., Tempelaar, R., Mulder, M., Sanderman, R., & Van den Bos, G. A. M. (2000). Patterns of caregiver experiences among partners of cancer patients. Gerontologist, 40, Nijboer, C., Tempelaar, R., Triemstra, M., Van den Bos, G. A. M., & Sanderman, R. (2001). The role of social and psychological resources in caregiving to cancer patients. Cancer, 91, Northouse, L. L. (1989). The impact of breast cancer on patient and husbands. Cancer Nursing, 12,

14 478 Jolanda Tuinstra et al. Northouse, L. L., Dorris, G., & Charron-Moore, C. (1995). Factors affecting couples adjustment to recurrent breast cancer. Social Science and Medicine, 41, Northouse, L. L., Templin, T., Mood, D., & Oberst, M. (1998). Couples adjustment to breast cancer and benign breast disease: A longitudinal analysis. Psycho-Oncology, 7, Northouse, L. L., Mood, D., Templin, T., Mellon, S., & George, T. (2000). Couples patterns of adjustment to colon cancer. Social Science and Medicine, 50, Northouse, L. L., Templin, T., & Mood, D. (2001). Couples adjustment to breast disease during the first year following diagnosis. Journal of Behavioral Medicine, 24, Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 3, Rohrbaugh, M. J., Cranford, J. A., Shoham, V., Nicklas, J. M., Sonnega, J. S., & Coyne, J. C. (2002). Couples coping with congestive heart failure: Role and gender differences in psychological distress. Journal of Family Psychology, 16, Rose-Rego, S. K., Strauss, M. E., & Smyth, K. A. (1998). Differences in the perceived well-being of wives and husbands caring for persons with Alzheimer s disease. The Gerontologist, 38, Thoits, P. A. (1991). On emerging identity theory and stress research. Social Psychology Quarterly, 54, Ybema, J. F., Kuijer, R. G., Buunk, B. P., De Jong, G. M., & Sanderman, R. (2001). Depression and perceptions of inequity among couples facing cancer. Personality and Social Psychology Bulletin, 27, Received 30 July 2002; revised version received 11 July 2003

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