Effects of breast cancer and mastectomy on emotional support and adjustment

0277-9536189 S3.00 + 0.00 Copyright C 1989 Pergamon Press plc

Sot. Sri. Med. Vol. 28. No. 1. pp. 19-27. 1989 Printed m Great Brttain. All rights reserved

EFFECTS OF BREAST CANCER AND MASTECTOMY EMOTIONAL SUPPORT AND ADJUSTMENT

ON

ROBERTZEMORE and LAWRENCE F. SHEPEL

Department of Psychology, University of Saskatchewan, Saskatoon, Saskatchewan S7N OWO, Canada Abstract-Wortman and Dunkel-Schetter [I] (J. Sot. Issues 35, 12&155. 1979) have argued that victims of misfortune are likely to experience reduced social support at a time when support is needed most. The resulting self-doubt and isolation are thought to increase the victims’ distress. Hypotheses derived from their analysis were tested by administering social and emotional adjustment inventories to 301 women who had undergone a mastectomy as treatment for breast cancer, and to 100 women diagnosed as having benign breast lumps (no-cancer, no-mastectomy controls). As expected, perceived emotional support was positively correlated with adjustment. However, contrary to Wortman and Dunkel-Schetter’s analysis, the cancer patients perceived greater emotional support from friends and family than did the controls. In addition, these cancer ‘victims’ were no more socially or emotionally maladjusted than women without cancer. Key words-ancer,

stigma, social support, reactions to victims

INTRODUCTION According to Wortman and her associates [l-3], rape victims, the disabled, the bereaved, cancer patients

and other victims of misfortune arouse mixed feelings in us; we tend to dislike, blame, and avoid them, and at the same time, feelings of sympathy and pity may also be present. Repeated exposure to this ambiguous and negative social feedback is thought to diminish the victim’s self-esteem and to aggravate an already troubled situation by creating additional sources of distress. Although this analysis is meant to apply to a variety of distressed populations, Wortman and Dunkel-Schetter [l] have argued that it is especially relevant for the cancer patient because of the fear and the stigma associated with the disease, and they point to several studies in the literature that are consistent with their analysis. However, most of the studies they cited had serious methodological shortcomings, or provided only indirect support for their analysis. The present study was intended to provide a more adequate assessment of Wortman and DunkelSchetter’s analysis. Three hypotheses relevant to breast cancer patients were derived from Wortman and Dunkel-Schetter’s [l] analysis: (1) breast cancer patients should perceive less emotional support from significant others than should no-cancer controls; (2) perceived emotional support should be related to self-esteem and other measures of adjustment; (3) breast cancer patients should experience more difficulties in their interpersonal relationships and their emotional adjustment than no-cancer controls. The effects of breast cancer on emotional support

The first hypothesis, that cancer patients should perceive less emotional support from family and friends than should no-cancer controls, derives from Wortman and Dunkel-Schetter’s (11 claim that victims of cancer elicit negative feelings in significant others, and that these negative feelings result in

behavior that cancer patients often interpret as evidence of rejection. General support for this analysis comes from studies inspired by Lerner’s just world hypothesis [4]. Many of these studies have found that observers tend to devalue or derogate those who have suffered innocently. According to Lerner, this derogation process allows the observer to remain secure in the belief that the world is a fair and just place, and that people generally get what they deserve. More direct tests of Wortman and DunkelSchetter’s analysis come from studies by PetersGolden [S] and Dunkel-Schetter [6] . Peters-Golden reported that of 100 breast cancer patients interviewed, 72% reported that they were treated differently after people knew they had cancer. Of these, 72% found that the most prevalent difference was that they were misunderstood; 52% found they were avoided or feared; 14% felt pitied, and only 3% thought people were ‘nicer’ to them than they had previously been. Further, only half of the patients interviewed by Peters-Golden characterized the support they received as adequate to fill their needs. In marked contrast to Peters-Golden’s (51 results, and to Wortman and Dunkel-Schetter’s [l] analysis, Dunkel-Schetter [6] reported that of the 79 cancer patients she interviewed, 95% indicated that they were receiving as much love and understanding from their spouse or closest significant other as they needed. It should be pointed out, however, that neither of these two studies provide an adequate test of our first hypothesis, since neither study used a control group to assess the effects of cancer on emotional support. If Wortman and DunkelSchetter’s [l] analysis is correct, we should find breast cancer patients reporting less emotional support from their friends and family than a comparison group of women without cancer. Emotional support and adjustment

Drawing on an extensive literature regarding the relationship between the quality of a patient’s 19

20

ROBERTZEMOREand LAWRENCEF. SHEPEL

interpersonal relationships and his or her ability to cope with illness [7], Wortman and Dunkel-Schetter [l] argue that the reduction in support that most cancer patients experience can contribute greatly to the cancer patient’s distress. “Since they elicit signs of rejection from virtually everyone, and since the negative feedback is fairly consistent across situations and over time, patients may draw the conclusions that they are worthless, unlovable and despicable. Ultimately, the self-doubt and isolation which result from disruption of one’s social relationships can contribute greatly to the cancer patient’s distress” [l, p. 1411.

Several studies have investigated the relationship between emotional support and adjustment in cancer patients. Bloom [S] interviewed 133 breast cancer patients who had undergone a mastectomy within the preceding 30 months. She found that perceptions of family cohesiveness and amount of social contact were negatively correlated with self-destructive coping behavior. Taylor et al. [9] interviewed 78 breast cancer patients and found adjustment correlated with the patient’s belief that she could share concerns with a significant other, with perceived support from friends, and with perceived support from family members [6, 10, 111. Thus, the evidence for an association between emotional support and adjustment in patients with an early diagnosis of breast cancer seems fairly substantial, and our ‘test’ of the second hypothesis can more appropriately be thought of as a conceptual replication of previous findings. The present study focuses on one particular aspect of social support, the individual’s perception that she can talk about her problems and her feelings with a friend, spouse, or relative. Wortman and her colleagues [l, 3, 121 have suggested that the opportunity to discuss feelings, particularly negative ones, is a type of support that may be very important to the cancer patient. Further, we have assumed that the more understanding, love and acceptance one receives from another individual, the more one is able to confide in that individual. Thus, a measure of a woman’s ability to talk about her feelings and concerns may also be considered a measure of the emotional support she receives from significant others in general. Eflects of breast cancer on adjustment If Wortman and Dunkel-Schetter [I ] are right about cancer resulting in a loss of support, and about the importance of support in psychosocial adjustment, then we should find that breast cancer patients are more poorly adjusted than no-cancer. no-mastectomy controls. Although several studies have reported findings that are consistent with this hypothesis, all have serious methodological shortcomings or are difficult to examine critically because they fail to provide full information about procedural details such as subject selection or interview protocol [ 131. The two studies most often cited as evidence for the severe and long-lasting emotional consequences of breast cancer and mastectomy are those by Maguire [14] and Morris et al. [15]. In Maguire’s study, semi-structured interviews were conducted with 75 breast cancer patients before mastectomy. 4 months

after mastectomy, and 12 months after mastectomy. Analysis of interviewer ratings revealed a greater incidence of anxiety, depression. and sexual problems among the breast cancer patients than among the no-cancer controls throughout the follow-up period. Doubts about these findings, however. are raised by Maguire’s failure to provide any evidence for the reliability or validity of his measures. Further, the study’s reliance on the ratings of interviewers who were not blind to the patient’s diagnosis does not allow us to rule out the possibility that the results were biased by interviewer expectancy effects Morris et al.‘s [15] study suffers from similar shortcomings. Many writers have referred this study as providing evidence for the adverse, long-term psychological effects of breast cancer and mastectomy. Their conclusions are apparently based on the finding of a greater incidence of depression among the breast cancer patients (22%) than the controls (8%) at 24 months postsurgery. However, this ignores the study’s failure to find breast cancer patients to be worse off than controls on measures of work adjustment, marital adjustment, sexual problems or interpersonal relationships at 12 or 24 months postsurgery. A more basic concern involves Morris et d’s failure to control for possible interviewer expectancy effects. Like Maguire’s [14] study, interviewers were not blind to the respondent’s diagnostic category and the reliability and validity of the interviewers’ judgments were not assessed. The course of adjustment

over time

Few studies have been concerned with assessing the course of adjustment to breast cancer and mastectomy over time. The two longitudinal studies just discussed [ 14, 151 suggest that most early stage breast cancer patients improve over time, but with a substantial minority continuing to show serious emotional difficulties one year after surgery. However, because of the methodological shortcomings of these earlier studies, and because of the implications such findings may have for various stage theories that propose that individuals follow a predictable, orderly path of emotional response following a life crisis [ 121, it seems advisable to take another look at adjustment as a function of time since surgery. Although Wortman and Dunkel-Schetter [I] have argued that the rejection experienced by cancer patients has detrimental effects on their adjustment, and that these effects are cumulative, it is not clear whether their analysis would predict decreasing social and emotional adjustment over the 2 years following mastectomy.

METHOD

Overvien To assess the effects of breast cancer and mastectomy on emotional support and adjustment, questionnaire data from 301 breast cancer patients were compared with those from 100 women with benign breast lumps (no-cancer, no-mastectomy control). Both samples were identified through central registries and sent letters requesting their participation in a study to learn more about how women adjust to

Effects of

cancer on perceived support

breast cancer and its treatments. For those cancer patients living in or near the two largest cities in Saskatchewan, participation meant taking part in an interview and then completing a self-administered questionnaire. Breast cancer patients living outside of these two cities were sent identical questionnaires to complete, but were not asked to participate in an interview. Women with a benign breast lump were sent the same questionnaires as provided to the cancer patients, except for the deletion of questions referring specifically to breast cancer. The present report focuses on data obtained from the questionnaires. Analyses of data obtained from the personal interviews are presented in a separate report [16]. Subject selection

Our sample of breast cancer patients was selected from the central registry of the Saskatchewan Cancer Foundation, which lists over 95% of the cancer patients in the province of Saskatchewan. Criteria for selection were as follows: (1) diagnosis of Stage I or Stage II breast cancer (tumor less than 5 cm and no evidence that the cancer has spread), (2) a modified radical mastectomy performed within the previous 2 years, (3) less than 70 years old, (4) no past or present chemotherapy or endocrine manipulation, (5) not institutionalized for retardation, senility, or psychiatric problems. Of the 425 eligible cancer patients who were sent letters requesting their participation in our study, 124 either explicitly refused or gave no response to our initial request or a follow-up request, leaving us with 301 usable questionnaires and a participation rate of 71%. Respondents’ ages ranged from 29 to 69, with a mean age of 56. Most (81%) were married and living with their husbands. Stage I breast cancer was the diagnosis for 68%, with the remainder diagnosed as Stage II. Radiotherapy had been administered to 42% of the participants. Nonparticipants did not differ significantly from participants on any of the above variables. They did, however, differ significantly from participants on time since surgery. As time since surgery increased, participation rates decreased. To illustrate, of those women who had undergone a mastectomy 1-2 months earlier, 84% agreed to participate in the study; of those women who had undergone a mastectomy 3-6, 7-12, 13-18, or 19-26 months earlier, 72%, 74%, 70%, and 56% agreed to participate, respectively, x2 (4, N = 425) = 14.21, P < 0.01. How time we were planning this study, the Cancer Foundation routinely registered all women diagnosed as

*At the

having a benign breast lump, as well as those diagnosed as having cancer, and we expected that it would not be difficult to select a comparison group that would be very similar to the breast cancer sample with regard to age and marital status. However, soon after we began our study, the Foundation closed its registry of benign tumor cases, leaving us with a smaller pool to choose from than we had expected. As a consequence, we were not able to match our samples as closely as we would have liked. tBecause of an oversight, we did not obtain any demographic data on the nonparticipants. Consequently, we were unable to determine if there were any systematic differences between the women with benign breast lumps who agreed to participate in the study and those who did not.

21

these differential participation rates may have biased the findings of this study is uncertain. The no-cancer, no-mastectomy control group consisted of women who had discovered a suspicious lump in their breast, but whose subsequent biopsy (60%), mammogram (33%), or tissue aspiration (7%) was negative. This particular comparison group was selected because their sociodemographic characteristics were likely to be similar to those of the mastectomy patients, and because women with benign breast lumps had previously been used as nocancer controls in two major studies [14, 151 in this area. Like the mastectomy sample, the controls were selected from the central registry of the Saskatchewan Cancer Foundation.* Of the 157 patients with benign breast lumps sent letters requesting their participation, 57 either refused or failed to respond, leaving us with 100 usable questionnaires and a participation rate for the comparison group of 64%. Respondents ranged in age from 31 to 69, with a mean of 50. The majority (87%) were married and living with their husbands. t The age difference between the mastectomy patients and the controls was statistically significant (P < 0.01). Differences in marital status, number of children, number of relatives within a 50 mile radius, and type of residence (rural, town under 10,000, town over 10,000) were not significant. Measures

All respondents were asked to complete a social adjustment scale, an emotional adjustment scale, and an emotional support scale. Social a&tment. The Social Adjustment Scale [ 171 is a 42-item questionnaire designed specifically for women. It assesses six major areas of functioning: at work (as a worker, housewife, or student); social and leisure activities; relationship with extended family; marital role; parental role; and membership in the family unit. Each item was scored on a five-point scale with higher scores indicating better adjustment. Examination of the scale’s validity suggests that it is sensitive to differences in adjustment among patient groups [18] and to changes in adjustment within patient groups [19]. Weissman and Paykel [20] also showed that Social Adjustment Scale data obtained from 76 depressed outpatients was in essential agreement with data obtained from the patients’ relatives and with data obtained through an interview with the patient. Emotional adjustment. The Emotional Adjustment Scale consisted of five subscales: Self-esteem, Hopelessness, Sensitivity-irritability, Hostility, and Life Satisfaction. Self-esteem was assessed using Rosenberg’s Scale [21]. Hopelessness was assessed using the 10 items from the Hopelessness Scale [22] with the highest item-total correlation coefficients. The Sensitivity-Irritability Subscale was composed of 10 items similar to those found on the Interpersonal Sensitivity Scale of the Hopkins Symptom Checklist [23] and the Irritability Scale of the Buss-Durkee Hostility Inventory [24]. The Hostility Subscale consisted of six items from the Resentment Scale of the Buss-Durkee Hostility Inventory. Life satisfaction was assessed using 11 of the 13 items from the short form of Life Satisfaction Index [25]. All items were presented in

22

ROBERT ZEMORE and

true-false format and scored I or 2, with the higher score indicating better adjustment.* Emotional support. Our measure of perceived emotional support was based on responses to three items from the Social Adjustment Scale [ 171: (1) Have you been able to talk about your feelings and problems with at least one friend during the last 2 weeks? (2) Have you been able to talk about your feelings and problems with at least one of your relatives in the last 2 weeks? (3) Have you been able to talk about your feelings and problems with your spouse or partner in the last 2 weeks? Responses to each item could range from 1 (I was never able to talk about my feelings) to 5 (I could always talk freely about my feelings). Although these three questions measure only one type of social support (the opportunity to discuss one’s feelings and concerns), Wortman and Dunkel-Schetter’s [l] analysis suggests that this is precisely the type of support that is most helpful to the cancer patient, as well as the type of support most likely to be withheld from the cancer patient [3, pp. 2342-23431.

LAWRENCE F. SHEPEL Table

I. Coefficient alpha

Social odjusnmm Work Social and leisure Extended family Family unit Manta1 Parental Overall (35 items)b

estm~atesof reliabilitv

351 323 349 251 179 I91

0.67 0.69 0.60 0.64 0.68 0.69 0.89

Self-esteem Hopelessness Sensittvity-irritabih [Y Hostility Life-estimation Overall (47 ttmes)

378 371 375 380 351 314

0.76 0.69 0.79 0.62 0.76 0.90

Overall (3 ‘Gems)

377

0.72

Emorionol

adjusrmenl

‘Number of respondents answering all Items on that scale. bDating and parenting items omitted from calculatton of coefficient alpha for overall social adjustment.

The course of support and adjustment and over time RESULTS

Missing data If a subject completed fewer than 50% of the items on any subscale of the Social Adjustment Scale, or fewer than 80% of the items on any subscale of the Emotional Adjustment Scale, no score was calculated for that subscale. Otherwise, a mean item score for each subscale was obtained by summing the scores for items within a subscale and dividing by the number of items completed for that subscale. With regard to the Emotional Support Scale, subject’s had to complete at least two of the three items. Overall scale scores were calculated by summing the scores for all items and dividing by total number of items completed. The percentage of eligible respondents completing the minimum number of items for a given scale ranged from 96 to 100, with no significant differences observed between cancer patients and controls. Reliability of measures Table 1 presents coefficient alpha estimates of reliability for each of the above measures. Estimates are based on the total number of women in both our samples who completed all items for that scale. Separate estimates for patients and controls were similar to those based on the combined samples. Coefficient alpha represents the expected correlation of one test with an alternative form containing the same number of items. A low alpha coefficient indicates either the test has too few items or the items have little in common [26]. As Table 1 indicates, the reliability estimates for the subscales of the social and emotional adjustment scales are lower than the estimate for the overall scores for these scales. Thus, any conclusions we might draw that are based on the subscale scores should be viewed as more tentative than those based on overall adjustment scores.

*Copies of the Emotional Adjustment Scales are available from the first author upon request.

To assess whether support or adjustment varied over time, scores for each breast cancer patient were arranged into one of five time-since-mastectomy categories: l-2 months, 3-6 months, 7-12 months, 13-18 months, and 19-26 months. One-way ANOVAs and trend analyses were unable to detect any significant differences in perceived support or in emotional adjustment as a function of time since surgery. With regard to social adjustment (see Table 2), only the Work Subscale of the Social Adjustment Scale showed a significant effect for time since surgery F(4,285) = 3.44, P < 0.01. Subsequent pair-wise comparisons (Neuman-Keuls with alpha set at P < 0.05) indicated that patients in the 1-2 months category scored significantly lower on work adjustment than did patients in any of the other four time categories. Differences in mean work adjustment among the latter four time categories were nonsignificant. To better understand this relationship between work adjustment and time since surgery, responses to each item of the Work Subscale were examined (see Table 3). Of the six items on the Work Subscale. only the first two showed significant differences in adjustment over time, F(4,294) = 8.66, P < 0.01; F(4,286) = 7.3 1, P < 0.01, respectively. Subsequent pairwise comparisons (Neuman-Keuls, with P < 0.05) indicated that the breast cancer patients in the l-2 months postsurgery group were less able to work and worked fewer days during the previous 2 weeks than patients who had more time to recover from their surgery. Feeling ashamed of one’s work, arguments at work, worry over work, and interest in work did not vary significantly with time since surgery. These results seem consistent with the idea that lower work adjustment scores during the first 2 months after mastectomy are a reflection of the physically debilitating effects of surgery, and are not the result of any emotional or social disability. Thus, we found little or no evidence to suggest that either perceived emotional support or adjustment varied as a function of time.

Effects of cancer on perceived Table 2. Social adjustment

as a function

of time since mastectomy

Months

rzf SD Social and leisure II; SD Extended

family Ic; SD

Marital : SD Parental II; SD Family

unit Cl SD

Overall

social adjustment II; SD

Higher

scores indicate

since mastectomy

l-2

36

7-12

13-18

19-26

62 4.45 0.49 65 4.54 0.40 63 4.69 0.33 57 4.19 0.43 28 4.50 0.43 61 4.48 0.58 66 4.46 0.3 I

69 4.63 0.37 71 4.40 0.51 72 4.62 0.34 56 4.17 0.59 39 4.52 0.41 63 4.27 0.68 75 4.42 0.39

60 4.65 0.52 60 4.48 0.54 58 4.72 0.30 48 4.32 0.34 14 4.50 0.38 56 4.51 0.53 60 4.50 0.40

56 4.72 0.34 55 4.38 0.46 53 4.62 0.40 45 4.21 0.49 24 4.50 0.46 50 4.47 0.53 56 4.41 0.34

43 4.69 0.42 44 4.56 0.38 43 4.68 0.30 36 4.19 0.53 20 4.70 0.32 39 4.39 0.57 44 4.51 0.30

Subscale Work

23

support

better adjustment.

Item scores could range from I to 5.

Eflects of cancer on perceived emotional support

Efects

The hypothesis that breast cancer patients would perceive less emotional support from others than would women without cancer was not supported. Instead, our sample of cancer patients scored significantly higher on overall support (mean = 4.30) than our sample of women with benign breast lumps [mean = 3.94; t(383) = 3.44, P < 0.011. However, because preliminary analyses had found a small but significant correlation between age and perceived support among mastectomy patients (r = 0.16), and because our cases and controls were imperfectly matched on age, an analysis of covariance was conducted on the support scores with group (cancer vs control) as the independent variable, and age as the covariate. This analysis also found cancer patients reporting more emotional support from others than the no-cancer controls F( 1,382) = 6.25, P =O.Ol.

The hypothesis that breast cancer patients would be more maladjusted than women without cancer was not supported. No significant differences were found between cancer patients and controls on any of the subscale scores or the overall score of the Emotional Adjustment Scale, while cancer patients actually showed better adjustment than controls on some of the subscales of the Social Adjustment Scale. Mean social adjustment scores for our two samples are presented in Table 4, along with means reported by Weissman et al. [ 181 for a community sample of 277 women living in New Haven, Connecticut, and a sample of 155 female outpatients being treated for acute depression. Weissman et ai.‘s samples provide additional reference points against which to assess the social adjustment of our breast cancer patients. As shown in Table 4, the cancer patients were no more maladjusted than the three comparison

Table 3. Work adjustment

as a function

of time since mastectomy

Months Item

of cancer on social and emotional adjustment

since mastectomy

l-2

34

7-12

13-18

19-26

II; SD

64 4.00

1.27

73 4.68 0.77

604.62 0.82

56 4.79 0.60

43 4.76 0.61

G SD

614.10 0.83

70 4.61 0.60

60 4.65 0.75

56 4.68 0.50

444.61 0.78

II; SD II;

624.81 0.46 634.96

71 4.82 0.51 71 4.9 I

604.73 0.71 60 4.97

56 4.85 0.34 56 4.94

SD

0.19

0.28

0.18

0.27

444.67 0.67 43 5.00 0.00

; SD

62 4.59 0.61

71 4.47 0.68

60 4.6 I 0.75

55 4.67 0.46

434.53 0.73

1[; SD

614.13 1.26

684.18 I .07

60 4.32 0.98

54 4.36 0.93

434.50 0.70

Days worked

Ability

to work

Ashamed

of work

Arguments

Worried

Interest

over work

about

work

in work

Higher scores indicate

better adjustment.

Item scores could range from

I to 5.

ROBERTZEMOREahd

24

LAWRENCEF. SHEPEL

Table 4. Social adjustment Present Breast

cancer

n

Subscales

Leisure Extended

family

Manta1 Parental

samples

breast

without

Residents

cancer

New

Mean

SD

n

Mean

4.62’.”

0.44

97

4.64’

290

different

Weissman

Women

patients

Work

in four

study

SD

I

0.3

er al. [ 121

of

Depressed

Haven

outpatients

n

Mean

SD

n

Mean

SD

272

4.54b

0.50

149

3.53c

0.74 0.65

295

4.46a

0.47

99

4.33b

0.47

277

4.17c

0.53

155

3.176

289

4.66’

0.34

92

4.52b

0.44

274

4.66’

0.35

155

3.85’

0.69

242

4.23’

0.48

85

4.16’

0.49

I91

4.23’

0.49

93

3.54b

0.58

125

4.54’

0.41

56

4.48’

0.39

175

4.57*

0.43

IO1

3.75b

0.82

Family

unit

269

4.42=

0.59

90

4.10b

0.67

270

4.46”

0.62

I40

3.14c

0.91

Overall

adjustment

301

4.47”

0.35

100

4.37b

0.35

277

4.39b

0.34

I55

3.47c

Higher

scores indicate

better

and dividing

by number

comparisons

(P < 0.05).

adjustment. of items

Scores can range from

completed.

Means

I to 5. Subscale

not sharing

a superscnpt

groups, and, on some subscales, were significantly better adjusted. Because preliminary analyses showed significant or nearly significant correlations between some of the adjustment measures and the variables of age and marital status, and because our cancer and control groups were imperfectly matched on these variables, analyses of covariance were also conducted on all adjustment measures with group (cancer vs benign) as the independent variable and age and marital status as the covariates. These analyses showed the breast cancer patients as better adjusted than the women with benign breast lumps on the Extended Family and the Family Unit Subscales of the Social Adjustment Scale; F(1,356) = 3.88, P < 0.05, and F(1,354) = 9.20, P < 0.01, respectively. There were no significant group differences on any of the other measures of adjustment. However, because marital status was so highly skewed in our samples, we may not have been able to completely control for its effects through statistical adjustments. Consequently, we conducted one more analysis on the adjustment data. We paired each control subject with a mastectomy patient of the same marital status and age. If a mastectomy patient of the same age and marital status as a control could not be found, the next closest in age was selected from among the patients who were younger than the control and of the same marital status. Only one control subject could not be matched with a mastectomy patient in this manner.

Table

5. Correlations

between

emotional

of support

Ability

to talk

with

to talk

with

support

and adjustment

to talk

with

perceived

emotional ‘P

support

l*f

< 0.05;

Ca. = Cancer ‘Because

0.35**

0.56.’

0.32..

0.41**

0.26’.

(288)

particular ‘Self-esteem analysis.

(281)

(96) 0.61

(280)

l

*

(96)

0.26..

0.49’.

(273)

(85)

0.43**

0.69.’

(239)

(84) 0.67** (95)

(283) 0.15.

(85)

0.39..

0.40** (290)

and controls

Self-esteemb Ca.

0.61

(234)

l*

0.55..

(283)

(275)

(236) 0.27..

(95)

(96) 0.42.’

0.28**

(84)

0.40..

Cont. 0.21’

(285)

(85) 0.35.. (84) 0.36.. (95)

< 0.001. patients.

Cont.

= No-cancer

the three emotional

three items

Emotional’ Cont.

spouse Overall

in cancer patients

of adjustment

Ca.

0.22.’

different

were deleted

support from

controls.

Number

Items were taken

the calculation

from

of respondents the Social

of the overall

in parentheses.

Adjustment

social adjustment

Scale, these score for this

analysis. was omitted

from

the calculation

0.46 item scores

by separate

r-test

The hypothesis that emotional support would be positively correlated with self-esteem and other measures of adjustment was tested twice, once with breast cancer patients and once with our control group of women with benign breast lumps. The results, summarized in Table 5, indicate substantial support for this hypothesis. Women who reported being able to talk about their concerns with at least one friend, relative, or spouse, scored higher on social and emotional adjustment and on self-esteem than did women who reported being unable to confide in

Cont.

at least one relative Ability

are significantly

Ca.

at least one friend Ability

in each row

by summing

Relationship between emotional support and adjustment

Social

Measures

scores were calculated

leaving us with 99 matched pairs of cases and controls. The mean age for the mastectomy patients was 49.47 years. The mean age for the controls was 49.83 years. Eighty-six percent of the women in each group were married and living with their husbands. The results of the matched pairs analysis did not differ substantially from the results of our covariance analysis. Breast cancer patients showed slightly better adjustment than the controls on the Extended Family Subscale, t(186) = 1.77; P < 0.10, and the Family Unit Subscale, t(181) = 2.34; P < 0.05. There were no significant group differences on any of the other measures of adjustment. Thus, the hypothesis that breast cancer patients would be more socially and emotionally maladjusted than women without cancer was not supported.

Measures

emotional

and overall

of overall

emotional

adjustment

for this particular

Effects of cancer on perceived support others. These relations held for both cancer patients and controls. However, the magnitude of the correlations was generally greater for the controls (differences between correlations were statistically significant in 7 of 12 comparisons).

DISCUSSION

Eflects of breast cancer on emotional

support

The hypothesis that breast cancer patients would perceive less emotional support than controls was not confirmed. Instead, the cancer patients in our study reported being more able to confide in their family and friends than did our sample of women with benign breast lumps. Rather than repelling others, breast cancer and mastectomy seemed to strengthen the relationships between the patient and important others. Personal interviews with a subsample of 87 patients who participated in this study revealed additional support for this conclusion [I 61. Although many of these women reported being concerned about their reduced ability to engage in physical activities and the possibility that their cancer may return, problems resulting from the supposed stigmatizing effects of cancer were reported by less than 10% of the patients. Instead of reports of rejection, abandonment, and depression, substantial numbers of breast cancer patients reported a more positive outlook on life, closer family ties, and an increased awareness of others’ caring about them. When asked if their experiences with breast cancer had any effect on their family, the most common response (49%) was that the family had become closer or more caring. When asked if anything good had come from their experience with cancer, 73% of the women were able to report at least one positive consequence, with a more positive outlook on life and closer family ties being the two most commonly reported consequences. The above findings, together with DunkelSchetter’s [6] finding that 95% of her cancer patients reported receiving as much support as they needed from their spouses or significant others, appear to conflict with reports that cancer patients feel rejected and abandoned [l, 5,271. The present findings also appear to be in conflict with a substantial body of literature that suggests that people dislike, blame, and avoid victims [2,4]. Past research on reactions to victims, however, has focused almost exclusively on the reactions strangers have toward an innocent victim. The findings of the present study suggest that the family and friends of an innocent victim may react more positively. Clearly, more research is needed to establish the conditions under which victims will be rejected or supported. The effects qf breast cancer on aa’justment The hypothesis that breast cancer patients would show poorer adjustment than the no-cancer, nomastectomy controls received no support from the present study. Women with breast cancer were no more maladjusted than either our sample of women with benign breast lumps or Weissman et al.‘s [18] sample of New Haven residents. Although our results conflict with the widely held belief that breast cancer

25

and mastectomy can overwhelm even the most welladjusted woman, the evidence supporting this belief is actually very weak. Most of the literature on coping with cancer consists of anecdotal reports or impressionistic accounts of data obtained from unstructured interviews. Some systematic investigations have been reported, but all have serious shortcomings, the most common of which is the use of a single interviewer-rater who is not blind to the diagnostic status of the respondent. Prior to conducting our study, we found only one major study that controlled for interviewer biases and expectancy effects. Like the present study, Craig et al. [28] eliminated the possibility of interviewer and observer biases by mailing self-administered questionnaires to breast cancer patients and controls. Unlike the present study, the majority of their cancer patients had undergone a mastectomy more than 5 years earlier (the majority of our patients had their mastectomies less than 1 year earlier). In response to questions about current health, more cancer patients (10%) rated their health as poor than did controls (4%). On the remaining indicators of quality of life, Craig et al. found no significant differences. Reports of employment status, attitude toward life, pessimism about the future, participation in sports, amount of social activity, and psychiatric symptomology during the previous 6 months all failed to discriminate between cancer patients and controls. Thus, the only two major studies to control for interviewer and observer biases both found breast cancer and mastectomy to have no lasting adverse effects on adjustment. Since the completion of our study, The Psychological Aspects of Breast Cancer Study Group [29] reported a I-year longitudinal study of 145 early stage breast cancer patients and 267 no-cancer controls. Although the report concludes that the breast cancer patients showed greater psychological distress than women without cancer, this conclusion was supported only by those measures which did not have safeguards against interviewer biases and expectancy effects (unblinded clinical interviews). Measures which prevented interviewer bias, such as self-administered versions of Rosenberg’s self-esteem scale [21], Beck et al.‘s hopelessness scale [22], and Derogatis’ Brief Symptom Inventory [30], did not show the cancer patients to be more distressed than the nocancer controls. Association between emotional support and adjustment In this study, perceived emotional support was positively correlated with social and emotional adjustment. Breast cancer patients who reported being able to talk about their feelings and problems with a friend, relative or spouse, scored higher on adjustment than patients who reported that they were unable to confide in others. These findings are consistent with those of previous studies that have looked at the relationship between support and adjustment in breast cancer patients [6,8-l I]. It should be noted, however, that the relationship between social support and adjustment may be dependent on the patient’s prognosis. Dunkel-Schetter [6] found that support was associated with greater psychological well-being for cancer patients with good prognosis, but not for patients with a poor prognosis. Since our sample of

26

ROBERTZEMOREand LAWRENCE F. SHEPEL

breast cancer patients was restricted to Stages I and II (good prognoses) we were unable to test for this possibility. However, we did find that the relationship between support and adjustment was generally stronger among the controls than among the breast cancer patients. If we consider that the prognosis of the no-cancer controls was better than that of the breast cancer patients, then our results are consistent with Dunkel-Schetter’s. Dunkel-Schetter (61 suggested that the reason for the weaker relationship between support and adjustment among those with more advanced cancers is that the beneficial effects of support may have been too weak to ward off the multiple threats associated with a poor prognosis. However, other explanations should also be considered. Variables that elicit social support for an individual with a good prognosis may not be the same ones that elicit support for an individual with a poor prognosis, and if these different sets of variables are differentially related to adjustment, then we would not expect social support and adjustment to show the same relationship under good prognosis as under poor prognosis. For example, when prognosis is good, social support may be primarily a function of the individual’s attractiveness, congeniality and social skills [31-341. When prognosis is poor, social support may depend more on others’ perceptions of the individual’s need for support. Assuming that congeniality and social skills are more likely to be positively correlated with adjustment than is need for support, social support will be more positively correlated with adjustment when prognosis is good than when prognosis is poor. Qual$cations The above results require explicit qualification. Tests of the first and third hypotheses used a posttestonly design with nonequivalent groups. According to Cook and Campbell [35], the most obvious flaw of this design is the absence of pretests, which leads to the possibility that any posttest differences (or lack of differences) between groups can be attributed to either a treatment effect or to selection differences between groups. In terms of the present study, this means that the observed posttest differences in emotional support between the cancer and no-cancer groups may have been due to any number of possible pretest differences between these groups. By matching and statistical adjustments we were able to exclude some of these possibilities, but certainly not all of them. Similarly, our failure to find posttreatment differences in adjustment between the breast cancer patients and the women with benign breast lumps may have been due to pretest differences. If, for example, the women in our breast cancer group were better adjusted before diagnoses than the women in our no-cancer control group, then finding no differences in adjustment following diagnoses would indicate that breast cancer has a negative impact on adjustment. In defense of our findings. however, it should be noted that if breast cancer did have an impact on adjustment, we should have found some evidence of recovery over the 2 years following mastectomy. Instead, only work adjustment was found to increase with time since surgery.

A related concern is the possibility that both the breast cancer patients and the comparison group of women with benign breast lumps experienced elevated, but equivalent levels of emotional distress. However. Weissman et al.‘s [ 181 norms for the Social Adjustment Scale, as presented in Table 4. do not support this rival hypothesis. If both benign and malignant groups were distressed, their social adjustment scores should have been lower than those of Weissman et al.‘s community sample. They were not. Of course. to make this argument. we must assume that there are no important differences between the population of women in New Haven, Connecticut, and the population of women in Saskatchewan that would result in better social adjustment among Saskatchewan women. The reader should also keep in mind that our selection criteria for breast cancer patients excluded women who were diagnosed as having advanced or recurrent cancers, women who were receiving or had received chemotherapy, and women who did not receive a modified radical mastectomy. Thus, our findings may not generalize to women in these excluded categories. We also waited at least I month from date of surgery before contacting the patients so we draw no conclusions regarding the nature or type of distress these patients experienced before then. Lastly, it might be argued that if we had included women with advanced cancers, we would have found more support for Wortman and Dunkel-Schetter’s [I] analysis. However, Wortman and Dunkel-Schetter did not restrict their analysis to only those patients with advanced cancer and many of the studies they cited in support of their analysis were based primarily on early stage breast cancer patient. According to these authors, the cancer patient is perceived as a victim of misfortune and, as a result, elicits ambiguous and negative reactions from others. To the extent that early stage breast cancer patients with modified radical mastectomies can be viewed as victims of misfortune. Wortman and Dunkel-Schetter’s analysis should apply. If their analysis does not apply to women who have undergone a mastectomy as treatment for breast cancer, then it is unclear why one should expect it to apply to other victims of misfortune. In conclusion, Wortman and Dunkel-Schetter’s [I] argument that people who are victims of misfortune will experience reduced emotional support was found not to be true for our sample of breast cancer and mastectomy patients. Instead, breast cancer patients reported more emotional support than women without cancer. Although there is now a great deal of evidence documenting the stress-buffering effects of perceived support [36], it is apparent that we know very little about the conditions that enhance or reduce that support. If we want to develop effective interventions to enhance perceived support, additional research into its determinants is essential. We hope the present report helps promote that research. Acknowledgemenrs-This research was supported by National Health Research and Development Program, Health and Welfare Canada Grant 6608-1128-42. The authors are grateful to Judy Sefton and Kathy Jardine for their aid in data collection; to those at the Saskatoon Cancer

Effects of cancer

on perceived

Clinic and the .Allan Blair Memorial Clinic, especially David Klaassen and Herbert Whiston: and to Myles Bollman, Peter Grant and Pegi Richards for their comments on an earlier draft of this paper. And, of course, we are deeply indebted to all the women who participated in this study.

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