JournalojPsychosomolic Printed in Great Britain.
Research, Vol. 28, No. 4. pp. 323-330. 1984.
TIME-LIMITED
0022.3999184 $3.00 + .@I 0 1984 Pergamon Press Ltd.
THEMATIC
POST-MASTECTOMY L. BAIDER*,J. C. AMIKAM* (Received21
GROUP WITH PATIENTS
and A. KAPLAN DE-Nom-f
October 1983; accepted in revisedform
24March 1984)
Abstract-Twenty-four post-mastectomy women participated in thematic time-limited groups. About half of the women reported that the groups helped them a lot, and in these women a significant decrease in psychological distress, especially anxiety and depression, was found. In the few who reported they were not helped, an increase in psychological distress was found, especially in hostility. The main concerns of the post-mastectomy women are described, as well as the need to develop predictors about who can benefit from time-limited groups. The preliminary data seems to indicate that patients became less prone to improvement with time (after the operation) and that patients who have the wish to share their experience with others do especially well in groups. INTRODUCTION
THE QUANTITY of literature, clinical accounts and research studies on breast cancer is reaching vast proportions as efforts are made to understand the experience of patients who undergo mastectomy, and to recommend and implement effective intervention programs. It is estimated that as many as 25-35% of the women undergoing mastectomy will have psychological problems serious enough to require psychiatric evaluation [l-4]. Bloom et af. [5] show that social support is the strongest predictor of the coping response and has indirect effects on basic measures of adjustment: self-concept, sense of power and psychological distress. However, contrary to most clinical and epidemiological literature, marital status was not found to be an important predictor of adjustment. This supports the contention that it is the perception of support rather than the existence of formal ties that is critical for the patient [2]. This paper focuses on the possible outcome of group dynamics on a sample of post-mastectomy women, measured by a series of tests given before and after one such psychotherapeutic intervention program. The therapeutic rationale for group intervention with post-mastectomy patients lies in the well documented effectiveness of the group process in promoting emotional, conguitive and behavioral change [I, 2, 51. Within a framework of emotional and social support, these patients can learn new skills for adaptive coping, skills which are congruent with each individual history, experience and personal reality. SUBJECTS
AND METHODS
Subjects Of the post-mastectomy patients who had undergone surgery for breast cancer from November, 1978 to November, 1982, who were registered in the files of the Oncology Department of the Hadassah University Hospital, Jerusalem, patients were selected by the following criteria: Jewish residents of Jerusalem; Hebrew or English speakers; age from 30 to 65 yr old; and with a minimum of 90 on the Karnovsky performance scale (only one woman had 90; all the rest were rated 100 by their physicians). *Institute of Oncology, Hadassah University Hospital, Jerusalem, Israel. j-Department of Psychiatry, Hadassah University Hospital, Jersualem, Israel. Address for correspondence and reprint requests: A. Kaplan De-Nour, M.D., Chairman, Department of Psychiatry, Hadassah University Hospital, P. 0. Box Jersualem, Israel. 323
Professor and 12000, il-91120
L. BAIDER, J. C. AMIKAM and A. KAPLAN DE-NOUR
324
There were 113 women who fulfilled the above mentioned criteria. They were all sent a letter in which rhere was an explanation about the group and were also told that the social worker of the outpatient service of Oncology would contact them by telephone to schedule an interview. Of the I13 women called up by the social worker, 27 refused to be interviewed. The reasons given were: “I don’t want to; I am not interested; 1 don’t need it; I am healthy; I don’t want any more contact with the hospital.” Eighty-Gx women agreed to be interviewed in their homes by the social worker and answered the adjustment measures used in the present study. Fifty-five of them, however, refused to participate in a group. The in other activities; the wish to forget the past common reasons given were: “lack of time; involvement ‘event’; feeling too vulnerable for any type of confrontation in a group.” We were left with a final sample of 31 self-selected women who wanted to participate in a group and whom we divided into three groups: One of the groups consisted of II bilingual women where the language used was English. The other two groups were randomly divided into two different starting times: one group of 13 women started immediately, while the other group of seven women started three months later. The present report concentrates on the first two groups which started simultaneously and right away: group A with 13 Hebrew-speaking patients and group B with 11 English-speaking patients (the comparison of the patients who wanted to participate in a group to the 55 who refused, will be reported separately). The two groups were not similar in terms of background. The English-speaking group had a rignificantly higher educational background (i 14.2, SD 1.99 compared to 9.7, SD 2.18, r=5.288). This group also defined themselves as not religious (only one of the I I compared to seven of the 13 in the Hebrewspeaking group was religious) and they were also (surprisingly) older (Z 53.5, SD 8.8 and X 45.7, SD 7.25, t = 2.343). There was a very wide range in the number of months after surgery, with the English-speaking group being more ‘veteran’, but the difference failed to reach statistical significance (_? 34.0, SD 32.56 in the English-speaking group and X 24.8, SD 18.82 in the Hebrew-speaking group). All but four women in the English-speaking group were married. Meihods
of measuringadjustment
The women’s Brief Symptom
condition Inventory
and outcome
before and after the group treatment was assessed through two tests--The (BSI) 161 and The Psychosocial Adjustment to Physical Illness Scale (PAIS)
[71.
The BSI is a 53 item self-report symptom inventory, designed to assess the psychological symptom status of psychiatric and medical patients as well as of non-patients. It measures 9 primary symptom dimensions, e.g. somatization, depression, anxiety, hostility. Raw scores range from O-no distress, to 4-maximal distress. The PAIS is a 47 items scale that covers 7 domains: health care orientation, vocational environment, domestic environment, sexual relations, extended family relations, social environment and psychological distress. Each item is composed like a 4-point scale, and thus the total score ranges from 0 no problems at all, to a maximal of 141-indicating that the disease caused maximal disturbance in everything. Furthermore, following the last session, the women completed a short questionnaire asking how much the group helped them (on a scale of 4, from ‘not at all’ to ‘a lot’), in what areas the group helped (the opportunity to speak freely with other women in the same situation, better understanding of family, decrease of tension and worry, more strength to cope, as well as ‘other areas’). They were asked to indicate whether they would like to continue the group treatment and what they thought could be improved in the group. The group process The groups were moderated by a senior psychologist and a social worker. The group leaders’ role was an active one, structuring the sessions around specific topics, promoting group interaction, and facilitating the verbal expression of feelings. Psychological interpretations and confrontations were based on the manifest and conscious rather than on the latent or unconscious. The group intervention comprised 12 structured sessions, each with a specific thematic subject, which the senior leader presented to the group without focusing on any particular member, but rather as a ‘working assumption’ to the entire group. The moderator several years’ experience with groups of poht-mastectomy women, using a variety of techniques, duration and number of meetings, led to the choice of 12 time-limited bessions. It was felt that this framework would provide a positive experiential event for the group members sufficient for the formation of a basic support system and cohesion, without incurring situation, of strong dependency and later loss. It ib not to be implied that in these 12 hesstonb all the potential problem area> which can afflict the post-mastectomy patient could be covered, but rather the most common crucial problems for the patients’ further elaboratton. It is also evident from the nature of the subject content that each theme evolve5 from the one before and unfolds into the next, that there is no clear cut differentiation, and that the
Post-mastectomy
group therapy
325
group pursued the subjects from session to session in a natural and spontaneous way. The subjects were divided into 4 basic categories: (i) Definitions and assumptions; (ii) Perception of self; (iii) Reallocation of roles, and (iv) Mourning and adaptation. (i) Definitions and assumptions 1. Introductions; socio-demographic data; information relating to surgery and treatment modalities. 2. Discovering the lump; reaction to the diagnosis; psychological reactions to surgery; fantasies before and after surgery. 3. Recollections of other stressful events; previous mechanisms of coping and adaptation. (ii) Perception of self 4. Body image, notion of asymmetry; before and after images. 5. Sexuality; self-perception as a woman. Mechanisms of adjustment. 6. Sexual relationship with partner. Readaptation to sexual behavior. (iii) Reallocation ofroles 7. Family roles; change and readjustment in the context of the family. 8. Patterns of sharing and communication within family of orientation and family of procreation. 9. Communication with the health team; view of the past and wishes for the future. (iv) Mourning and adaptation 10. Fear of new occurrences; the certainty-uncertainty dichotomy. 11. Anticipatory mourning. Fear of loss, separation, death. New mechanisms of adaptation. 12. Group separation. Sharing of symbolic gifts. RESULTS
Group attendance during the 12 sessions was nearly lOO%, with very sporadic absences (of only three women). Each time that a member could not come, the patient telephoned the leaders of the group to explain the reasons for her absence. Despite the fact that most of the group members did not know each other before the first group meeting, they called each other by their first names and exchanged home telephone numbers. This spontaneous suggestion from the group members was supported by the group leaders. Although the two groups differed in terms of background, they did not differ in terms of pre-treatment adjustment. On psychological distress (as measured by the BSI) group A reported somewhat, but not significantly, more distress than group B (0.68 SD 0.38 compared to 0.51 SD 0.32, t = 1.152). There was even less difference in terms of psychosocial adjustment as measured by the PAIS (mean total score of 0.63 in group A and 0.60 in group B). A central question was whether the group psychotherapy had helped all or some of the women. No differences were found between the two groups in the outcome as assessed by the patients, i.e., in each group just less than half of the group reported that they were helped ‘a lot’. Altogether, of the 24 women 11 reported that they were helped a lot, nine that they got some help and four that they were not helped by the group therapy. The next question was, therefore, to what extent this feeling of having been helped or not is reflected in the measures used. Although the groups are small, the changes found are not only substantial but also reach statistically significant levels (Table I). In the group of patients that reported being helped ‘a lot’ there was a significant decrease in psychological distress, while in the very small group of patients that reported not being helped, there was a significant increase in psychological distress. The change in psychosocial adjustment was along similar lines, but less extreme. In the group that reported being helped ‘a lot’, there was a decrease in the PAIS scores (indicating less problems in adjustment). In order to try to gather some additional information, the scores of the subscales on the PAIS and the BSI were analyzed by paired t-test by the three groups (‘helped a lot’, ‘somewhat’ and ‘not helped’).
L.
326
TABLE
BALDER,
J. C. AMIKAM and A. KAPLAN DE-NOUR
I.--CHANGES
IN
PSYCHOLOGICAL DISTRESS AND IN .~D,“SrMENT
Patient’s assessment group therap) -
of
Helped a lot
Some help
No. of patients
Not helped 4
BSI
Pre-treatment-
x SD
Post-treatment-
x SD
paired f-test
0.57 0.17 0.40 0.18 3.03
0.53 0.38 0.53 0.45 NS
0.82 0.57 1.13 0.72 3.65
33.6 17.9 25.9 8.6 2.1
33.6 16.4 34.2 16.1 NS
26.7 18.7 29.3 16.8 NS
PA IS Pre-treatmentPoht-treatmentpaired t-test
x SD x SD
In the group of patients who reported that they were ‘helped a lot’ by the group there was a decrease (improvement) in the mean scores of all of the subscales of the PAIS. The difference was of statistical significance on the subscale of psychological distress (t = 2.913 p < 0.05) and approached statistical significance on the subscale of domestic environment (t= 2.082~ < 0.10). On the BSI the mean scores decreased (improved) on all of the subscales with a significant change on the subscale of anxiety (t = 2.906 p < 0.05) and approaching significance on the subscale of depression (1= 2.091 p < 0.10). The opposite was found in the very small group of patients who reported that they were not helped. The mean scores on all of the subscales of the BSI increased, although not at statistically significant levels, and all the mean scores of the subscales of the PAIS increased with that of psychological distress being at a statistically significant level (t = 4.246~ < 0.05). The group that reported some help showed a ‘mixed’ change-the means of some of the scales went up and some down. It should be mentioned that on health orientation of the PAIS a statistically significant improvement was found (t= 2.942 p < 0.05) and on the scales of the BSI a deterioration was found, especially on the subscale of hostility (t = 2.022 p < 0.10). These findings highlight another question: Group work seems to help some patients, but others get worse. Is it possible to predict for whom it is or is not good to enter group psychotherapy? There was hardly any difference in terms of background (age, education and marital status) between the three categories of patients (i.e. those who were helped very much, somewhat and not at all). Religiosity (as defined by the patients) did not influence having been helped or not by the group. It seems that the time that has passed since the operation has some influence: The mean number of months for the ‘helped a lot’ group was 23, for the ‘some help’ 36, and for the ‘not helped’ 28 months. There was, however, a wide variability within each group, and thus the differences did not reach statistical levels. Looking at the pre-treatment measures one gets the impression that the ‘not helped’ group started out with a higher psychological distress than the other patients.
Post-mastectomy
group
therapy
327
Again the differences did not reach a significant level, probably because of the size of the group and the intragroup variability, yet they seem substantial (mean BSI score of 0.81 compared to 0.57). Some further suggestions about the indications for group therapy can be gathered from the patients’ replies to the question of in what areas the group helped them (Table II). One may say that the “feeling of being able to cope better” is another way of saying that the group therapy has helped. Of greater interest is the answer about “talking to other patients”. It seems quite clear that the patients who enjoyed being able to talk to other patients are the ones who profited most by the group treatment. One might suggest, therefore, that the need to share experiences may be an indicator for group therapy. This impression is supported by the finding that all the patients in the ‘helped a lot’ group wanted the group to continue, while in the ‘somewhat helped’ group three quarters, and in the ‘no help’ only a quarter wanted the group to continue. TABLE %
II.-ASSESSMENT
of patients
OF GROUP’S
HELP
helped by group in:
Better understanding of family
Decrease of tension
Better able to cope
Pt’s overall assessment
Talking to other pts.
Helped a lot (11)
91
45
36
91
Some help (9)
67
22
22
33
Hardly/not helped (4)
50
50
0
25
A detailed description of the group process will be reported separately. Some of the basic concerns, however, are included because they shed some light on the question of who is likely to benefit from group treatment. BASIC CONCERNS
Twenty-two of the 24 women found the lump by themselves, and two through a physical examination; only six women talked with their husbands about the lump (after its discovery); the rest communicated with their sisters, mothers, sisters-in-law, daughters; only one woman talked with a friend who was a nurse; 19 of the 20 married women went to see their physicians without their husbands; only after being referred for a biopsy did they talk with their partners. The group expressed the feeling that their husbands were too busy to alarm them; that a husband would probably react as if “it is nothing”, diminish any sense of urgency and preoccupation. The group was united in finding it more comfortable to talk to or to ask for help from members of their own original families, but being very careful that friends or neighbors should not become involved. Nineteen members of the group were still experiencing difficulties in re-establishing close sexual relationships. They stated that while before the operation their sexual relationships had been more or less good, since the operation they had sought more emotional than sexual closeness with their partners. Sexual intercourse was engaged
328
L. BAIDEK, J. C. AMIKAM and A. KAPLAN DE-NOUR
in out of a sense of “wifely duty” rather than out of desire or need. Some of the women explained this as being a result of their discomfort with their bodies, their feeling like “incomplete” women, unused to their asymmetry; others were very involved with thoughts of their illness, treatments or the fear of recurrence; others were still too angry with their own “fate” just to “please” their partners. The group clearly expressed the feeling that their sexuality had been taken from them, that they needed to gain a new perception and a reaffirmation of their body image, and to re-establish a sense of their own sexuality, something which could not be provided by their partners or anyone else. Another aspect of body image related to the mastectomy scar itself. Only three women had shown their husbands the operation scar. The remaining group members (other than four who had no partners) expressed the view that it was better for the that the husband was not “strong” husband not to see “the disgusting wound”, enough to be confronted with the reality of his wife’s body, and that only when wearing the prosthesis could the wife undress in front of him. The group consensus was that it was much better for the relationship if the husband did not see his wife’s “real body”, but instead could imagine it as it had been before. After the operation, these women had been helped by a close relative until they could function on their own. There was also concensus that the partner could not be involved in the woman’s thoughts, fears, and, often, preoccupation with illness and death. Group members agreed that for the good of the marriage, the partner should be spared the wife’s profound anxieties about having cancer. Their picture of a husband was of someone weak, vulnerable, and incapable of understanding or of assuming a protective role. The desperate need to talk about their own feelings, to know if their thoughts and emotions were normal or crazy, to share, to listen, to ask, to communicate-all this was either poured onto their families of orientation or held tight within their own lonely selves.
DISCUSSION It should be repeated and stressed that when a post-mastectomy group of women were approached by letter, nearly a quarter of them refused any contact at all. Another very substantial group-nearly half of the sample-were ready to be interviewed to give information about their adjustment and complete some scales, but refused the offer of time-limited group psychotherapy. Thus only a minority of the sample (about a quarter) did start group therapy and half of them felt very much helped by the group treatment. Therefore, time limited group therapy cannot and should not be regarded as the only, or as the best, method of helping post-mastectomy patients; many of them, at least in our culture, refuse to try it. In the women that did come for group therapy the sense of isolation, both from spouses and friends, was very acute. Thus it is not surprising that those who enjoyed the opportunity of sharing their feelings and thoughts with other women in a similar situation, gained most by the group work. In our own group approach, changes in the individual attitudes and behavior evolved directly from the group’s “emotional culture”. Pity, sadness, self-deception and anger were not confronted as negative, attention-seeking emotions, but rather
Post-mastectomy
group therapy
329
viewed as being within the norm of possible behaviors, ranging from the most altruistic gesture to the most painful and greedy action. Time, emotional support, acceptance and understanding slowly changed the extremes of this multi-dimensional spectrum of individual behavior, moving the group from instability and individualism towards a climax of unity, cohesiveness and resolution. The group learned with time to be non-judgemental of personal actions, creating an atmosphere of basic trust, openness and caring. Group members served as role models for each other (projective-identification), confronting and being confronted with their own effective or inadequate coping mechanisms toward their illness. By listening and observing one another, group members learned to share their own unresolved dilemmas, like their profound sense of ambiguity, lack of control, isolation, etc., and could adapt new repertoires and new resolutions within their own environmental resources. Seeing themselves contributing and giving others a feeling of well-being enhanced in them a sense of worth, reducing the feelings of helplessness and uselessness [8-lo]. The group gave its members legitimization of the expression of their ultimate secrets of failure, anger, disillusion, and sexual wishes. It rewarded them with an unexpected sense of group identification, sympathetic understanding and collective acceptance. Before the study was started it was doubted whether the measures used-the Brief Symptom Inventory and the Psychosocial Adjustment to Physical Illness Scale -would be sensitive enough to reflect change in the patient’s condition. Even though the sample was small and even though the intragroup variability was very high, significant changes were found. In those patients who claimed that the group helped them ‘a lot’ there was a very significant decrease in psychological distress, especially as far as anxiety and depression are concerned. One can suggest that a good deal of the patient’s psychological distress stems from their isolation and the group work helped in that. It seems that the time limited group work could not help in other basic concerns and therefore it is not surprising that other specific areas of adjustment, e.g. health, sexual or social relations, did not change significantly. It seems that group work can not only help but also cause harm. In particular, patients who started with high psychological distress were not helped but got worse. One could suggest that these patients should have been in a more supportive anxietyreducing treatment and not in a group therapy where control of anxiety-producing processes is very limited. The study has raised a few questions that cannot be answered from the available information. How long will the effect of the group work be maintained, i.e., will the decrease in psychological distress be sustained and maybe even lead to improvements in other areas of adjustment, or will it disappear? And that leads to another question: Should the group therapy be indeed very time-limited or would longer treatments achieve more? We do not have the answer to that; the majority of patients were very definite in their opinion that the group should continue, and a study to test this question is planned. Tentative conclusions can be drawn from the study: (a) Time-limited focused group psychotherapy decreased the psychological distress of about half of postmastectomy patients. (b) The patients who seem to benefit most from such treatment are those who are not too long after the operation, who would like to talk to other people in similar situations, and who report some but not extreme psychological distress.
330
L. BAIDER, .I. C. AMIKAM and A. KAPI.A~~:Da-Now REFERENCES
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