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Correlates of participation in a breast cancer support group
Journal of Psychosomatic Research, Vol. 45, No. 3, pp. 263–275, 1998 Copyright 1998 Elsevier Science Inc. All rights reserved. 0022-3999/98 $–see front matter
S0022-3999(97)00296-1
CORRELATES OF PARTICIPATION IN A BREAST CANCER SUPPORT GROUP MICHAEL J. STEVENS* and JORIE E. DUTTLINGER,† (Received 30 September 1996; accepted 28 October 1997) Abstract—We identified correlates of participation in a breast cancer support group. Thirty-eight breast cancer patients were classified as established members, new members, or nonmembers of breast cancer support groups and were administered a Background Data Sheet, Medical Questionnaire, and the Personality Assessment Inventory. Established members were most educated, had the most friends with cancer, perceived group as more supportive than new members, and identified coping skills and sense of community as the most helpful features of group; new members held longer meetings than established members, rated their relatives as least supportive, and cited medical information as the most beneficial feature of group. Established members manifested the least anxiety, depression, stress, nonsupport, and aggression. We integrate these findings with the literature on social support and cancer and offer suggestions for research and practice. 1998 Elsevier Science Inc. Keywords:
Breast cancer; Support group.
INTRODUCTION
Although most women adjust well to breast cancer [1, 2], some have difficulty expressing negative emotions, including anger, anxiety, and depression [1, 3–8]. For example, breast cancer patients indicated experiencing anger and losing control of their anger more often than patients with benign breast disease or controls and exhibited high levels of anxiety and stress [3, 6, 7]. Women who received a diagnosis of cancer acknowledged more suppression of anger and more intense episodic expression of anger than women with benign biopsies [8]. Breast cancer patients also reported more hopelessness and helplessness and were less expressive than women with fibrocystic disease or healthy controls [4]. These adjustment difficulties point to the potential benefits of social support. Social support is thought to buffer the adverse physical and psychological impact of disease by prompting endocrinological, cognitive, and behavioral adaptation (e.g., heightened immune competence, primary and secondary reappraisal of threat, increased compliance with treatment) [9, 10]. Researchers have found that social * Department of Psychology, Illinois State University, Normal, Illinois, USA. †Tucson, Arizona, USA. This research was based on a master’s thesis by the second author that was supervised by the first author. An earlier version of this work was presented at the annual meeting of the Association for the Advancement of Behavior Therapy, Washington, DC, November 1995. Address correspondence to: Michael J. Stevens, Ph.D., Department of Psychology, Illinois State University, Campus Box 4620, Normal, IL 61790-4620. Tel: (309)-438-7146; Fax:(309)-438-5789; E-mail: [email protected]
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support can influence the health status of patients with cancer [10–12]. To illustrate, the 7-year survival of breast cancer patients, adjusted for potential demographic and medical confounds, was 77.5% for women who confided in a physician or nurse within 3 months after surgery, 71.1% for women using other confidants during the same period, and 56.3% for those not confiding in anyone [11]. These differences are at least as large as those found in trials of adjuvant chemotherapy. Other studies have also shown that medical caregivers and fellow patients are significant sources of emotional support [13–15] and that cancer patients are better adjusted psychologically when high levels of social support are provided [1, 16–18]. Although it is well-documented that cancer patients seek to express their feelings and receive support from family, friends, and medical caregivers [13, 15], they occasionally encounter barriers to communication and support [1, 19]. These barriers can take the form of negative reactions from others (e.g., fear, conflict, avoidance) [1]. In fact, some cancer patients report that social support is either not available or is inappropriate and unhelpful [1, 13, 14]. Social support requires involvement in a cancer patient’s efforts to cope; however, beneficial effects occur when advice, affection, affirmation, and/or tangible aid match the needs of the recipient, when the recipient perceives support, when equality exists between provider and recipient, and when the relationship is not conflictual [10, 11, 14, 17, 18]. These factors, coupled with the ambivalence often experienced by family and friends, may explain why support from other cancer patients is perceived as more beneficial [13, 14, 17, 18]. Inconsistencies in the relationship between social support and cancer may also reflect complexities in defining and measuring support [9, 10, 17]. Some investigators have not adequately distinguished quantitative from qualitative forms of social support. The number of ties to and frequency of contacts with members of a social network and the structure of that network (e.g., reciprocity) provide objective indices of social integration that are associated with health maintenance and disease prevention [9, 10]. The perceived availability of support and perceived function and quality of support received constitute subjective indices of social support linked to sustained physical and psychological functioning when a person is ill [9, 10]. Given different types of social support, it is not surprising that the form (e.g., structured interviews, rating scales, standardized tests) and psychometric properties of socialsupport measures also vary [16, 17], further clouding the research on social support and cancer. Research on the impact of participating in a support group and adjustment to breast cancer is sparse in spite of the popularity of breast cancer support groups [20] and media attention they have received [21]. Spiegel et al. [22] compared 34 women with breast cancer who attended a weekly 90-minute support group to 24 breast cancer patients not participating in a support group. After 1 year, women who attended group reported less anxiety, confusion, depression, and helplessness; coped less maladaptively; and appeared more vigorous than nonparticipants. The investigators attributed these findings to greater expression of negative emotion, increased confrontation of fears, reduced isolation, and raised expectations of improved quality of life. In a related study, Silverman-Dresner [23] found that, although breast cancer patients in support groups reported more life difficulties, they were less distressed by them. Moreover, the longer these women attended support groups, the less distress they experienced. Stevenson and Cohn [24] reported that breast cancer
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patients who attended more support-group meetings tended to realize their hopes for emotional support and medical information. Evidence for the effectiveness of cancer support groups is equivocal. Derogatis et al. [25] documented that breast cancer patients became more alienated, anxious, depressed, and hostile regardless of whether they participated in a support group. Telch and Telch [26] found that cancer patients in a nondirective support group showed little improvement on indices of mood, worry, communication and coping, physical and social activity, satisfaction with appearance, sexual intimacy, and work relative to patients receiving group instruction in active coping skills; a control group of cancer patients showed deterioration in functioning on these measures. Studies of the relationship between participation in a support group and adjustment to cancer have several methodological limitations, many of which were corrected in the present study. For example, few studies have specified the criteria used to identify breast cancer support groups [26] or the parameters of participation and features of group that were effective [24, 27]. Investigators have frequently assessed adjustment with either a global measure or several narrow indices rather than with multidimensional devices; multidimensional assessment would further articulate adjustment to breast cancer and inform clinical decisionmaking [2]. Moreover, selfreport measures have been administered that lack the reliability and validity of standardized instruments or have a social desirability bias [2, 9, 16, 17]. Samples have included male and female patients with different cancers [15, 16], making it difficult to isolate the role of gender and distinct cancers on adjustment. Furthermore, demographic information, stage of disease, and type of medical treatment have not always been included in descriptions of breast cancer patients [2, 9, 11, 17]. Such data are essential for comparing studies and identifying possible moderators of group participation (e.g., women at different stages of breast cancer may face challenges best suited to certain kinds of social support; medical treatment may moderate availability of support). We explored the relationship of various demographic, medical, and psychosocial factors to level of participation in a breast cancer support group. We were particularly interested in whether certain parameters of participation and features of group, perceived by members as helpful, would be associated with level of supportgroup participation. Based on the research on social support and adjustment to breast cancer [3–8, 10, 11, 17, 18, 22–24, 26], we also expected that the adjustment of breast cancer patients would vary with level of support-group participation, with established members manifesting superior adjustment relative to new members who, in turn, would show better adjustment than women not participating in a support group. The methodological difficulties of researching support groups [20] and the exploratory nature of this study necessitated a cross-sectional design, even though it precluded the determination of causality [9, 11], a limitation further confounded by evidence that those who join a support group constitute a nonrepresentative sample whose pre-existing characteristics may positively bias the outcome of participation [20]. Support groups are generally not amenable to longitudinal investigation as they are protective of members’ confidentiality and vulnerability, unwilling to sacrifice time or allow repeated disruptions, and reluctant to complete measures that appear intrusive or contrary to the aims of group. Research on cancer support groups
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is additionally challenging because membership and participation is affected by the sometimes unpredictable course of treatment and lingering stigma of the disease. Because of the scattered, univariate focus of most research on cancer support groups, we chose a multivariate approach, administering a psychometrically sound multidimensional measure of adjustment.
METHOD Sample Participants were 38 women between 25 and 65 years old, most of whom had been diagnosed with stage I metastatic carcinoma of the breast and had received either surgery or surgery plus chemotherapy or radiation. The sample was mainly white, married, educated beyond high school, and middle to uppermiddle class (Tables I and II). Women who attended more than six breast cancer support-group meetings (range⫽7–40⫹) constituted the established-member condition (n⫽15); two women (13.33%) attended 7–15 meetings, three women (20.00%) attended 16–25 meetings, eight women (53.33%) attended 26–40 meetings, and two women (13.33%) attended over 40 meetings. Women who attended fewer than three breast cancer support-group meetings (range⫽1–3) formed the new-member condition (n⫽12). Women who never attended a breast cancer support group comprised the nonmember condition (n⫽11). Breast cancer patients at different levels of support-group participation did not differ on age, ethnicity, marital status, household income, involvement in other support groups, previous psychotherapy (only two members had undergone psychotherapy), stage of cancer, medical treatment received, duration of medical treatment, and duration of medication used (Tables I and II). Established and new members did not differ on medical treatment when joining group or type of group facilitator (Table II).
Support-group criteria Five criteria were used to identify breast cancer support groups: (a) groups had a well-defined focus on breast cancer and its impact; (b) the purpose of the groups was to exchange information and assistance, give comfort and validation, and improve functioning in a semi-structured manner; (c) the groups were essentially self-governed with members serving as primary caregivers, but had professionals or paraprofessionals who led issue-focused discussions and exercises, explained medical and psychological aspects of cancer and its treatment, and provided training in coping skills; (d) the groups met weekly for at least 90 minutes (Table I) and consisted of approximately 10–15 members; (e) the groups charged no fees [16, 19, 20, 26]. Support groups were facilitated by a nurse (n⫽12, 44.4%), psychotherapist (n⫽6, 22.2%), or paraprofessional (n⫽9, 33.3%).
Measures Background Data Sheet (BDS). The BDS is a 14-item questionnaire developed for this study containing five-point Likert-type, multiple-choice, and open-ended questions. Items inquired about age, ethnicity, marital status, grade level, household income, participation in other support groups within the last 3 years, participation in psychotherapy within the last 3 years, parameters of support-group participation (i.e., average meeting length, number of meetings attended, average number of members, type of facilitator, and medical treatment when joining), most helpful features of group (i.e., role models, emotional support, coping skills, sense of community, and medical information), and degree of helpfulness of the group. Medical Questionnaire (MQ). The MQ is a 21-item questionnaire, also developed for this study, comprised of five-point Likert-type and open-ended questions. Items solicited information about respondents’ history of breast cancer (i.e., months since diagnosis, stage of cancer, medical treatment received, duration of medical treatment, and duration of medication use); number of friends and relatives with cancer; number and severity of current symptoms; severity of overall pain; degree of support received from friends, friends with cancer, family, relatives, coworkers, church, breast cancer support group, oncologist, and medical caregivers; and satisfaction with medical treatment. Personality Assessment Inventory (PAI). The PAI is a 344-item measure of psychological adjustment [28]. The PAI consists of 22 scales, including 4 validity scales (Inconsistency, Infrequency, Negative Impression, Positive Impression), 11 clinical scales (Somatic Complaints, Anxiety, Anxiety-Related Disorders, Depression, Mania, Paranoia, Schizophrenia, Borderline Features, Antisocial Features, Alcohol Problems, Drug Problems), 5 scales that measure factors related to course of treatment (Aggression, Suicidal Ideation, Stress, Nonsupport, Treatment Rejection), and 2 interpersonal scales (Dominance, Warmth). Each scale was content-keyed based on conceptual and empirical literature. Items that appeared biased with respect to age, gender, race, and social desirability were deleted. United States norms
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were established for an adult sample representing demographic projections for 1995 and psychiatric patients from 69 clinical sites with diagnoses corresponding to epidemiological data. Because of their relevance to the literature on social support and cancer, the following scales were scored: Somatic Complaints, Anxiety, Depression, Alcohol Problems, Drug Problems, Suicidal Ideation, Stress, Nonsupport, Anxiety-Related Disorders, and Aggression. Respondents endorse each item as false, slightly true, mainly true, or very true. Responses are then scored on a four-point scale (0–3 if an item denotes maladjustment and 3–0 if it denotes adjustment). Raw scores for each scale are summed and then transformed into standard scores. Higher scores reflect greater maladjustment. PAI scales are internally consistent (median ␣⬎0.8), stable over 3 weeks (median r⬎0.8) and have good concurrent (median r⬎0.8) and discriminant validity (median r⬍0.3) [28].
Procedures Breast cancer patients were recruited from oncologists, facilitators of three breast cancer support groups from which established and new members were solicited, and community organizations for cancer patients in two medium-sized midwestern cities. These sources were informed about the study and requested to distribute packets containing the counterbalanced measures to breast cancer patients. After receiving an overview of the study and giving written consent to participate, volunteers were instructed to complete the BDS, MQ, and PAI anonymously at home and return the forms to the oncologist or support-group facilitator at their next appointment or meeting. After returning the completed materials, the women received a debriefing statement. Information about the study and instructions for completing the measures were presented by the first author, oncologist, or support-group facilitator.
RESULTS
The results are presented as follows: group differences on BDS and MQ items; group differences on PAI scales; and intercorrelations of PAI scales. One-way analyses of variance (ANOVAs) on BDS and MQ data(Table I) were significant for grade level [F(2, 35)⫽6.58, p⬍0.005], average meeting length [F(1, 25)⫽13.89, p⬍0.001], number of friends with cancer [F(2, 35)⫽4.35, p⬍0.05], support rating for relatives [F(2, 35)⫽4.42, p⬍0.05], and support rating for breast cancer support group [F(1, 25)⫽14.16, p⬍0.001). Duncan’s tests revealed that established members had the highest grade level. New members reported longer meetings than established members. Established members reported the most friends with cancer. New members rated their relatives as least supportive. Established members rated group as more supportive than did new members. Established and new groups did not differ on average number of members and rated the helpfulness of their support groups identically. Group differences did not emerge on number of relatives with cancer; support received from friends, friends with cancer, family, coworkers, church, oncologist, and medical caregivers; and satisfaction with medical treatment. Frequencies and percentages for BDS and MQ items are presented in Table II. Chi-square analyses of BDS responses were significant for several features of group identified as most helpful (ps⬍0.05), including coping skills [2(1)⫽4.05], sense of community [2(1)⫽5.49], and medical information [2(1)⫽5.20]. More established than new members reported coping skills and sense of community as the most helpful features of group; more new members than established members cited medical information as most helpful. Comparable proportions of established and new members indicated that role models and emotional support were most helpful. No breast cancer patient showed inconsistent responding (Inconsistency mean⫽ 62.05, sd⫽0.80), attentional difficulty (Infrequency mean⫽57.79, sd⫽0.78), a negative response set (Negative Impression mean⫽68.79, sd⫽11.47), or a positive response set (Positive Impression mean⫽54.24, sd⫽8.43) on PAI validity scales.
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A one-way multivariate analysis of covariance (MANCOVA) was conducted on PAI scale scores (Table III). BDS and MQ data on which there were significant group differences based on medical status served as covariates. Covariates were months since diagnosis [F(2, 35)⫽9.77, p⬍0.001], number of symptoms [F(2, 35)⫽5.68, p⬍0.01], severity of symptoms [F(2, 25)⫽5.07, p⬍0.01], and severity of overallpain [F(2, 35)⫽5.24, p⬍0.01]. Duncan’s tests showed that new members were most recently diagnosed, listed the most symptoms, and had the highest severity ratings for symptoms. Nonmembers reported the lowest overall pain. The MANCOVA was significant, Pillai’s [F(20, 42)⫽5.06, p⬍0.001]. Follow-up analyses of covariance were significant for Anxiety [F(2, 29)⫽18.97, p⬍0.001], Depression [F(2, 29)⫽7.68, p⬍0.005], Stress [F(2, 29)⫽20.57, p⬍0.001], Nonsupport [F(2, 29)⫽110.30, p⬍0.001], and Aggression [F(2, 29)⫽43.18, p⬍0.001]. Duncan’s tests on adjusted data revealed that Anxiety, Stress, and Nonsupport scores were lowest for established members, intermediate for new members, and highest for nonmembers. Depression and Aggression scores were lowest for established members. Several correlations were found between PAI scale scores(ps⬍0.001).1 Anxiety scores were positively correlated with Depression [r(36)⫽0.60], Stress [r(36)⫽0.63], Nonsupport [r(36)⫽0.71], and Aggression [r(36)⫽0.57] scores. Depression scores were positively correlated with scores on Stress [r(36)⫽0.58], Nonsupport [r(36)⫽0.57], and Aggression [r(36)⫽0.68]. Stress scores were positively correlated with scores on Nonsupport [r(36)⫽0.81] and Aggression [r(36)⫽0.59]. DISCUSSION
We identified demographic, medical, and psychosocial correlates of participation in a breast cancer support group. Of particular interest were the parameters of participation and features of group, perceived by members as helpful, that were associated with level of support-group participation. Of the group differences on BDS and MQ items, the higher grade level of established members suggests that they may be better informed about the potential benefits of participating in a breast cancer support group and less inclined to view participation as stigmatizing [13]. That established members rated group as more supportive than new members was expected because they attended more meetings and, presumably, received consistent support over time [16, 17, 24]. They experienced the learning of coping skills and sense of community as the most helpful features of group [24], aspects of social support that may be best suited to the needs of women at this level of support-group participation and time since cancer diagnosis [2, 10, 13, 16–18, 27]. We note, however, that number of meetings attended may not adequately represent level of support-group participation as it does not capture the qualitative aspects of participants’ experience of group (e.g., group cohesion, meaningful involvement). By contrast, new members reported longer meetings, a reflection, perhaps, of their more recent diagnosis and greater number and severity of symptoms. Thus, they may have wanted more medical information, which they experienced as the 1
A complete set of intercorrelations is available from the first author.
n ⫽ 27.
46.07 16.87 90.00 24.40 13.20 4.67 27.73 5.33 6.53 6.73 1.47 0.40 1.20 2.53 4.27 2.40 4.87 3.73 1.80 1.80 4.73 4.07 4.20 4.00
Age Grade level Average meeting length Number of meetings attended Average number of members Helpfulness of support group Months since diagnosis Duration of medical treatment Duration of medication use Friends with cancer Relatives with cancer Number of current symptoms Severity of current symptoms Severity of overall pain Support from friends Support from friends with cancer Support from family Support from relatives Support from coworkers Support from church Support from support group Support from oncologist Support from medical caregivers Satisfaction with treatment
a
Mean
Items 11.22 2.29 0.00 15.37 1.50 0.49 15.38 2.69 15.22 9.31 1.81 0.51 1.66 0.92 0.88 2.38 0.35 0.70 2.31 1.74 0.46 0.59 0.41 0.65
sd
Established members (n ⫽ 15)
45.67 14.83 105.00 1.50 12.50 4.67 6.67 3.58 0.50 0.42 0.58 1.08 2.58 3.17 4.17 1.50 5.00 3.08 3.00 2.00 3.92 3.67 3.67 3.75
Mean 6.24 2.17 15.67 0.50 1.10 0.49 3.94 2.54 1.17 0.67 1.00 1.00 2.02 1.70 0.94 2.24 0.00 0.51 1.13 1.54 0.67 0.65 0.89 0.62
sd
New members (n ⫽ 12)
8.48 2.09
15.05 2.98 4.47 1.75 0.67 0.40 1.04 1.43 0.60 2.46 0.40 0.75 1.69 1.86 0.54 0.67 0.67
24.00 5.45 2.00 1.55 0.36 0.18 0.45 1.36 3.82 2.55 4.82 3.82 2.55 1.55 3.91 3.64 4.36
sd
48.64 13.82
Mean
Nonmembers (n ⫽ 11)
Table I.—Means and standard deviations for Background Data Sheet and Medical Questionnaire items
46.68 15.34 96.67a 14.22a 12.89a 4.67a 20.00 4.82 3.32 3.24 0.87 0.55 1.42 2.39 4.11 2.26 4.89 3.55 2.39 1.79 3.11a 3.89 3.87 4.03
Mean
Total (N ⫽ 38)
8.96 2.51 12.71 12.62 1.40 0.48 15.55 2.79 10.04 6.49 1.38 0.76 1.81 1.50 1.83 2.34 0.31 0.72 1.85 1.68 2.09 0.61 0.70 0.68
sd
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Ethnicity White Other Marital status Single Married Divorced Widowed Household income $31,000 to $50,000 $51,000⫹ Other support groups Previous psychotherapy Stage of cancer Stage I Stage II Stage III Medical treatment received Surgery Chemotherapy Radiation Two treatments Three treatments
Items 93.33 6.67 6.67 66.67 20.00 6.67 26.67 73.33 0.00 6.67 73.33 20.00 6.67 20.00 6.67 0.00 66.67 6.67
1 10 2 1 4 11 0 1 11 3 1 3 1 0 10 1
Percent
14 1
Freq.
Established members (n ⫽ 15)
5 0 1 6 0
10 2 0
5 7 0 0
0 11 1 0
12 0
Freq.
41.67 0.00 8.33 50.00 0.00
83.33 16.67 0.00
41.67 58.33 0.00 0.00
0.00 91.67 8.33 0.00
100.00 0.00
Percent
New members (n ⫽ 12)
2 2 1 6 0
7 3 1
5 6 0 1
0 9 2 0
11 0
Freq.
18.18 18.18 9.09 54.55 0.00
63.64 27.27 9.09
45.45 54.54 0.00 9.09
0.00 81.82 18.18 0.00
100.00 0.00
Percent
Nonmembers (n ⫽ 11)
Table II.—Frequencies and percentages for Background Data Sheet and Medical Questionnaire items
10 3 2 22 1
28 8 2
14 24 0 2
1 30 6 1
37 1
Freq.
(continued)
26.32 7.89 5.26 57.89 2.63
73.68 21.05 5.26
36.84 63.15 0.00 5.26
2.63 78.95 15.79 2.63
97.36 2.63
Percent
Total (N ⫽ 38)
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a
n ⫽ 27.
Type of facilitator Nurse Psychotherapist Paraprofessional Medical treatment when joining Before treatment During chemotherapy During radiation After surgery Most helpful features of group Role models Emotional support Coping skills Sense of community Medical information
Items 53.33 20.00 26.67 6.67 40.00 13.33 40.00 20.00 86.67 53.33 60.00 53.33
1 6 2 6 3 13 8 9 8
Percent
8 3 4
Freq.
Established members (n ⫽ 15)
0 8 2 2 11
7 2 0 3
4 2 6
Freq.
0.00 66.67 16.67 16.67 91.67
58.33 16.67 0.00 25.00
33.33 16.67 50.00
Percent
New members (n ⫽ 12)
Table II.—(continued)
Freq.
Percent
Nonmembers (n ⫽ 11)
3 21 10 11 19
8 8 2 9
12 5 10
Freq.
11.11a 77.78a 37.04a 40.74a 70.37a
29.63a 29.63a 7.41a 33.33a
44.44a 18.52a 37.04a
Percent
Total (N ⫽ 38)
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Table III.—Means and standard deviations of t-scores for Personality Assessment Inventory scales Established members (n ⫽ 15)
New members (n ⫽ 12)
Nonmembers (n ⫽ 11)
Total (N ⫽ 38)
Scales
Mean
sd
Mean
sd
Mean
sd
Mean
sd
Somatic complaints Anxiety Depression Alcohol problems Drug problems Suicidal ideation Stress Nonsupport Anxiety-related disorders Aggression
56.60 48.27 47.27 44.27 44.40 43.80 43.47 38.67 47.73 42.87
5.76 5.95 4.08 5.01 3.04 2.11 3.50 3.02 6.57 3.16
59.42 55.58 54.25 43.58 43.92 44.50 49.58 42.75 50.25 59.50
2.78 7.15 4.58 .52 .29 .67 5.04 3.19 5.51 5.78
60.55 64.64 56.27 44.27 44.00 44.92 61.00 61.18 50.18 60.18
3.17 3.12 2.83 .91 .00 1.04 4.31 3.03 7.25 2.48
58.63 55.32 52.08 44.05 44.13 44.34 50.47 46.47 49.24 53.13
4.53 8.79 5.55 3.15 1.89 1.53 8.39 10.12 6.41 9.27
most helpful feature of group and as valued as coping skills and sense of community were for established members [24]. New members’ receptivity to medical information may also be related to having fewer friends with cancer and supportive relatives from whom they could obtain such information [14, 15, 17]. Differences between established and new members underscore the importance of identifying elements of social support that are valued and possibly tied to effective coping at certain levels of support-group participation and stages of cancer and its treatment; these differences have implications for the selection of interventions that match the specific needs of subgroups of breast cancer patients [1, 2, 10, 13, 16–18, 27]. In general, we also confirmed that the adjustment of breast cancer patients varied according to level of support-group participation, with established members of support groups manifesting superior adjustment relative to new members who, in turn, showed better adjustment than nonparticipants. Established members reported the least anxiety, depression, stress, nonsupport, and aggression; new members reported less anxiety, stress, and nonsupport than nonmembers. These results converge with research on the relationship between social support and cancer [1, 9–11] and studies of the impact of support groups on the adjustment of breast cancer patients [22–24, 26]. Though correlational, the findings suggest the possibility that ongoing participation in a support group may facilitate adjustment to the diagnosis and treatment of breast cancer. However, a linear, let alone causal, relationship between number of meetings attended and adjustment should not be assumed; it is conceivable that the benefits of group diminish for new members, whose defenses against the reality of cancer are being tested before they have become acclimated to group, and that premorbid factors, which predict adjustment independently of what group offers, determine support-group participation [9, 11, 12]. Although they differed on anxiety, stress, and nonsupport, new members manifested comparable levels of depression and aggression as nonmembers. As in grief work, anger and depression are reactions to multiple losses that breast cancer patients suffer [1, 3–8], which may require more time, support, and even therapeutic intervention to resolve. Future studies might inquire whether certain dimensions of adjustment are amenable to change at varying levels of participation in a breast cancer support group [27].
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At risk are nonmembers who, in spite of reporting the least pain and symptoms comparable in number and severity to established members, appeared less welladjusted, manifesting the highest levels of anxiety, stress, and nonsupport. Given the moderate to high perceived support of friends, family, relatives, oncologist, and medical caregivers, they may have been less motivated to seek the support of fellow cancer patients [15, 17]. It may be important to educate and provide incentives for nonmembers to join a support group as they may not recognize the benefits of doing so [9–11,16–18, 22–24, 26]. Group differences in adjustment cannot be attributed to demographic (i.e., age, ethnicity, marital status, and household income), medical (i.e., stage of cancer, months since diagnosis, number and severity of symptoms, overall pain, medical treatment received, duration of medical treatment, and medical treatment when joining group), psychosocial (i.e., involvement in other support groups or psychotherapy), psychometric (i.e., validity of PAI scores), and treatment-related (i.e., type of group facilitator) variables. The findings dovetail with studies linking positive outcomes to semistructured rather than nondirective support groups [26] and call for rigorous investigations of the role of friendship with other breast cancer patients, coping skills, sense of community, and experience of group support in the adjustment of women with breast cancer [13–16, 17, 18, 24]. For instance, through which pathways do these variables fulfill the need for breast cancer patients to discharge anger, anxiety, depression, and stress [1, 9, 11]? Group differences did not emerge on somatic complaints, alcohol and drug problems, suicidal ideation, and anxiety-related disorders, which may be due to the size, demographic composition, early stage of cancer, medical history, and psychological profile of the sample [2, 9–11]; the stability of PAI scales measuring these domains of adjustment [28]; and the content and format of the support groups [19, 22–26]. PAI scale scores for the pooled sample indicate understandable concern about body integrity and physical functioning [1], appropriate alcohol and infrequent drug use [2], and freedom from debilitating forms of anxiety (e.g., obsessions and compulsions) and depression [2]. Several PAI scales on which group differences emerged were correlated. The number and magnitude of intercorrelations correspond to those obtained for the normative sample [28]. Inspection of items that comprise correlated PAI scales reveals modest content redundancy. Perhaps, scale intercorrelations reflect natural covariation in dimensions of adjustment. It is reasonable to expect covariation among anxiety, depression, stress, nonsupport, and aggression based on studies of the adjustment of breast cancer patients [1, 3–8, 25, 27]. However, such covariation makes it difficult to infer the precise impact of participation in a support group. Researchers should determine whether dimensions of adjustment are influenced simultaneously or whether some are affected directly and then mediate changes in other dimensions.
CONCLUSION
We found that different levels of participation in a breast cancer support group were associated with specific demographic, medical, and psychosocial factors, the most meaningful of which were sources of support and features of group perceived as helpful. We also confirmed that the adjustment of breast cancer patients varied
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with level of support-group participation. The results underscore the value women assign to breast cancer support groups, particularly support that takes the form of coping skills, sense of community, and medical information. These findings may have implications not only for women with mainly stage I metastatic carcinoma of the breast, but for cancer patients in general as they cope with the disease and its treatment. Notwithstanding the methodological difficulties of conducting research on support groups, there is no substitute for an experimental approach. The cross-sectional design of this study compromised any presumed effects of support-group participation because of threats to internal validity (i.e., maturation, mortality, and selection). The voluntary participation of breast cancer patients also introduced potential selection bias capable of affecting adjustment independent of group. Although we attempted to control statistically for group differences on medical variables, the possibility remains that group differences in adjustment were confounded by factors antedating the decision to join a support group (e.g., prior or coexisting diseases, personality characteristics, coping resources). Investigators should design prospective inquiries in which breast cancer patients are randomly assigned to a breast cancer support group and compared to other seriously ill medical patients and matched controls. Larger and more representative samples of breast cancer patients, with group equivalence on demographic and medical factors, is desirable. More sophisticated criteria than number of meetings attended should be used in determining level of support-group participation (e.g., indices of meaningful involvement). Control should also be exerted over the content and format of support groups as well as the status of support-group facilitators. Given the stability of some PAI scales, other measures of adjustment should be administered that are more sensitive to changes produced by psychosocial interventions for cancer (e.g., Cancer Adjustment Survey). Last, a conceptual framework is needed to focus research on mechanisms whereby certain features of social support influence specific dimensions of adjustment of breast cancer patients at particular levels of support-group participation and stages of the disease and its treatment; such coherence would facilitate the systematic matching of women to the most beneficial forms of social support.
REFERENCES 1. Moyer A, Salovey P. Psychosocial sequelae of breast cancer and its treatment. Ann Behav Med 1996;18:110–125. 2. Nelson DV, Friedman LC, Baer PE, Lane M, Smith FE. Subtypes of psychosocial adjustment to breast cancer. J Behav Med 1994;17:127–141. 3. Gilbar O, Florian V. Do women with inoperable breast cancer have a psychological profile? Omega 1991;23:217–226. 4. Jansen MA, Muenz LR. A retrospective study of personality variables associated with fibrocystic disease and breast cancer. J Psychosom Res 1984;28:35–42. 5. Watson M, Greer S. Development of a questionnaire measure of emotional control. J Psychosom Res 1993:27:299–305. 6. Forsen A. Psychosocial stress as a risk for breast cancer. Psychother Psychosom 1991;55:176–185. 7. Morris T, Greer S, Pettingale KW, Watson M. Patterns of expression of anger and their psychological correlates in women with breast cancer. J Psychosom Res 1981;25:111–117. 8. Gross J. Emotional suppression in cancer onset and progression. Soc Sci Med 1989;12:1239–1248.
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9. Cohen S. Psychosocial models of the role of social support in the etiology of physical disease. Health Psychol 1988;7:269–297. 10. Rowland JH. Interpersonal resources: social support. In: Holland JC, Rowland JH, eds. Handbook of psychooncology: psychological care of the patient with cancer. New York: Oxford University Press 1989:58–71. 11. Maunsell E, Brisson J, Deschenes L. Social support and survival among women with breast cancer. Cancer 1995;76:631–637. 12. Waxler-Morrison N, Hislop TG, Mears B, Kan L. Effects of social relationships on survival for women with breast cancer: a prospective study. Soc Sci Med 1991;33:177–183. 13. Bauman LJ, Gervey R, Siegel K. Factors associated with cancer patients’ participation in support groups. J Psychosoc Oncol 1992;10:1–20. 14. Dakof GA, Taylor SE. Victims’ perceptions of social support: what is helpful from whom? J Pers Soc Psychol 1990;58:80–89. 15. Rose JH. Social support and cancer: adult patients’ desire for support from family, friends, and health professionals. Am J Commun Psychol 1990;18:439–464. 16. Hitch PJ, Fielding RG, Llewelyn SP. Effectiveness of self-help and support groups for cancer patients: a review. Psychol Health 1994;9:437–448. 17. Nelles WB, McCaffrey RJ, Blanchard CG, Ruckdeschel JC. Social support and breast cancer: a review. J Psychosoc Oncol 1991;9:21–34. 18. Spiegel D. Effects of psychosocial support on patients with metastatic breast cancer. J Psychosoc Oncol 1992;10:113–120. 19. Baider L, Amikam JC, Kaplan De-Nour A. Time-limited thematic group with post-mastectomy patients. J Psychosom Res 1984;28:323–330. 20. Jacobs MK, Goodman G. Psychology and self-help groups: predictions on a partnership. Am Psychol 1989;44:536–545. 21. Moyers BD, Flowers BS. Healing and the mind. New York: Doubleday 1993. 22. Spiegel D, Bloom JR, Yalom I. Group support for patients with metastatic cancer: A randomized prospective outcome study. Arch Gen Psychiatry 1981;38:527–533. 23. Silverman-Dresner T. Self-help groups for women who have had breast cancer. Imagination Cogn Pers 1989–1990;9:237–243. 24. Stevenson BS, Cohn PM. A breast cancer support group: activities and value to mastectomy patients. J Cancer Educ 1993;8:239–242. 25. Derogatis LR, Abeloff MD, Melisaratos N. Psychological coping mechanisms and survival time in metastatic breast cancer. JAMA 1979;242:1504–1508. 26. Telch CF, Telch MJ. Group coping skills instruction and supportive group therapy for cancer patients: a comparison of strategies. J Consult Clin Psychol 1986;54:802–805. 27. Heim E, Augustiny KF, Schaffner L, Valach L. Coping with breast cancer over time and situation. J Psychosom Res 1993;37:523–542. 28. Morey LC. Manual for the Personality Assessment Inventory. Odessa, Florida: Psychological Assessment Resources 1991.
S0022-3999(97)00296-1
CORRELATES OF PARTICIPATION IN A BREAST CANCER SUPPORT GROUP MICHAEL J. STEVENS* and JORIE E. DUTTLINGER,† (Received 30 September 1996; accepted 28 October 1997) Abstract—We identified correlates of participation in a breast cancer support group. Thirty-eight breast cancer patients were classified as established members, new members, or nonmembers of breast cancer support groups and were administered a Background Data Sheet, Medical Questionnaire, and the Personality Assessment Inventory. Established members were most educated, had the most friends with cancer, perceived group as more supportive than new members, and identified coping skills and sense of community as the most helpful features of group; new members held longer meetings than established members, rated their relatives as least supportive, and cited medical information as the most beneficial feature of group. Established members manifested the least anxiety, depression, stress, nonsupport, and aggression. We integrate these findings with the literature on social support and cancer and offer suggestions for research and practice. 1998 Elsevier Science Inc. Keywords:
Breast cancer; Support group.
INTRODUCTION
Although most women adjust well to breast cancer [1, 2], some have difficulty expressing negative emotions, including anger, anxiety, and depression [1, 3–8]. For example, breast cancer patients indicated experiencing anger and losing control of their anger more often than patients with benign breast disease or controls and exhibited high levels of anxiety and stress [3, 6, 7]. Women who received a diagnosis of cancer acknowledged more suppression of anger and more intense episodic expression of anger than women with benign biopsies [8]. Breast cancer patients also reported more hopelessness and helplessness and were less expressive than women with fibrocystic disease or healthy controls [4]. These adjustment difficulties point to the potential benefits of social support. Social support is thought to buffer the adverse physical and psychological impact of disease by prompting endocrinological, cognitive, and behavioral adaptation (e.g., heightened immune competence, primary and secondary reappraisal of threat, increased compliance with treatment) [9, 10]. Researchers have found that social * Department of Psychology, Illinois State University, Normal, Illinois, USA. †Tucson, Arizona, USA. This research was based on a master’s thesis by the second author that was supervised by the first author. An earlier version of this work was presented at the annual meeting of the Association for the Advancement of Behavior Therapy, Washington, DC, November 1995. Address correspondence to: Michael J. Stevens, Ph.D., Department of Psychology, Illinois State University, Campus Box 4620, Normal, IL 61790-4620. Tel: (309)-438-7146; Fax:(309)-438-5789; E-mail: [email protected]
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support can influence the health status of patients with cancer [10–12]. To illustrate, the 7-year survival of breast cancer patients, adjusted for potential demographic and medical confounds, was 77.5% for women who confided in a physician or nurse within 3 months after surgery, 71.1% for women using other confidants during the same period, and 56.3% for those not confiding in anyone [11]. These differences are at least as large as those found in trials of adjuvant chemotherapy. Other studies have also shown that medical caregivers and fellow patients are significant sources of emotional support [13–15] and that cancer patients are better adjusted psychologically when high levels of social support are provided [1, 16–18]. Although it is well-documented that cancer patients seek to express their feelings and receive support from family, friends, and medical caregivers [13, 15], they occasionally encounter barriers to communication and support [1, 19]. These barriers can take the form of negative reactions from others (e.g., fear, conflict, avoidance) [1]. In fact, some cancer patients report that social support is either not available or is inappropriate and unhelpful [1, 13, 14]. Social support requires involvement in a cancer patient’s efforts to cope; however, beneficial effects occur when advice, affection, affirmation, and/or tangible aid match the needs of the recipient, when the recipient perceives support, when equality exists between provider and recipient, and when the relationship is not conflictual [10, 11, 14, 17, 18]. These factors, coupled with the ambivalence often experienced by family and friends, may explain why support from other cancer patients is perceived as more beneficial [13, 14, 17, 18]. Inconsistencies in the relationship between social support and cancer may also reflect complexities in defining and measuring support [9, 10, 17]. Some investigators have not adequately distinguished quantitative from qualitative forms of social support. The number of ties to and frequency of contacts with members of a social network and the structure of that network (e.g., reciprocity) provide objective indices of social integration that are associated with health maintenance and disease prevention [9, 10]. The perceived availability of support and perceived function and quality of support received constitute subjective indices of social support linked to sustained physical and psychological functioning when a person is ill [9, 10]. Given different types of social support, it is not surprising that the form (e.g., structured interviews, rating scales, standardized tests) and psychometric properties of socialsupport measures also vary [16, 17], further clouding the research on social support and cancer. Research on the impact of participating in a support group and adjustment to breast cancer is sparse in spite of the popularity of breast cancer support groups [20] and media attention they have received [21]. Spiegel et al. [22] compared 34 women with breast cancer who attended a weekly 90-minute support group to 24 breast cancer patients not participating in a support group. After 1 year, women who attended group reported less anxiety, confusion, depression, and helplessness; coped less maladaptively; and appeared more vigorous than nonparticipants. The investigators attributed these findings to greater expression of negative emotion, increased confrontation of fears, reduced isolation, and raised expectations of improved quality of life. In a related study, Silverman-Dresner [23] found that, although breast cancer patients in support groups reported more life difficulties, they were less distressed by them. Moreover, the longer these women attended support groups, the less distress they experienced. Stevenson and Cohn [24] reported that breast cancer
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patients who attended more support-group meetings tended to realize their hopes for emotional support and medical information. Evidence for the effectiveness of cancer support groups is equivocal. Derogatis et al. [25] documented that breast cancer patients became more alienated, anxious, depressed, and hostile regardless of whether they participated in a support group. Telch and Telch [26] found that cancer patients in a nondirective support group showed little improvement on indices of mood, worry, communication and coping, physical and social activity, satisfaction with appearance, sexual intimacy, and work relative to patients receiving group instruction in active coping skills; a control group of cancer patients showed deterioration in functioning on these measures. Studies of the relationship between participation in a support group and adjustment to cancer have several methodological limitations, many of which were corrected in the present study. For example, few studies have specified the criteria used to identify breast cancer support groups [26] or the parameters of participation and features of group that were effective [24, 27]. Investigators have frequently assessed adjustment with either a global measure or several narrow indices rather than with multidimensional devices; multidimensional assessment would further articulate adjustment to breast cancer and inform clinical decisionmaking [2]. Moreover, selfreport measures have been administered that lack the reliability and validity of standardized instruments or have a social desirability bias [2, 9, 16, 17]. Samples have included male and female patients with different cancers [15, 16], making it difficult to isolate the role of gender and distinct cancers on adjustment. Furthermore, demographic information, stage of disease, and type of medical treatment have not always been included in descriptions of breast cancer patients [2, 9, 11, 17]. Such data are essential for comparing studies and identifying possible moderators of group participation (e.g., women at different stages of breast cancer may face challenges best suited to certain kinds of social support; medical treatment may moderate availability of support). We explored the relationship of various demographic, medical, and psychosocial factors to level of participation in a breast cancer support group. We were particularly interested in whether certain parameters of participation and features of group, perceived by members as helpful, would be associated with level of supportgroup participation. Based on the research on social support and adjustment to breast cancer [3–8, 10, 11, 17, 18, 22–24, 26], we also expected that the adjustment of breast cancer patients would vary with level of support-group participation, with established members manifesting superior adjustment relative to new members who, in turn, would show better adjustment than women not participating in a support group. The methodological difficulties of researching support groups [20] and the exploratory nature of this study necessitated a cross-sectional design, even though it precluded the determination of causality [9, 11], a limitation further confounded by evidence that those who join a support group constitute a nonrepresentative sample whose pre-existing characteristics may positively bias the outcome of participation [20]. Support groups are generally not amenable to longitudinal investigation as they are protective of members’ confidentiality and vulnerability, unwilling to sacrifice time or allow repeated disruptions, and reluctant to complete measures that appear intrusive or contrary to the aims of group. Research on cancer support groups
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is additionally challenging because membership and participation is affected by the sometimes unpredictable course of treatment and lingering stigma of the disease. Because of the scattered, univariate focus of most research on cancer support groups, we chose a multivariate approach, administering a psychometrically sound multidimensional measure of adjustment.
METHOD Sample Participants were 38 women between 25 and 65 years old, most of whom had been diagnosed with stage I metastatic carcinoma of the breast and had received either surgery or surgery plus chemotherapy or radiation. The sample was mainly white, married, educated beyond high school, and middle to uppermiddle class (Tables I and II). Women who attended more than six breast cancer support-group meetings (range⫽7–40⫹) constituted the established-member condition (n⫽15); two women (13.33%) attended 7–15 meetings, three women (20.00%) attended 16–25 meetings, eight women (53.33%) attended 26–40 meetings, and two women (13.33%) attended over 40 meetings. Women who attended fewer than three breast cancer support-group meetings (range⫽1–3) formed the new-member condition (n⫽12). Women who never attended a breast cancer support group comprised the nonmember condition (n⫽11). Breast cancer patients at different levels of support-group participation did not differ on age, ethnicity, marital status, household income, involvement in other support groups, previous psychotherapy (only two members had undergone psychotherapy), stage of cancer, medical treatment received, duration of medical treatment, and duration of medication used (Tables I and II). Established and new members did not differ on medical treatment when joining group or type of group facilitator (Table II).
Support-group criteria Five criteria were used to identify breast cancer support groups: (a) groups had a well-defined focus on breast cancer and its impact; (b) the purpose of the groups was to exchange information and assistance, give comfort and validation, and improve functioning in a semi-structured manner; (c) the groups were essentially self-governed with members serving as primary caregivers, but had professionals or paraprofessionals who led issue-focused discussions and exercises, explained medical and psychological aspects of cancer and its treatment, and provided training in coping skills; (d) the groups met weekly for at least 90 minutes (Table I) and consisted of approximately 10–15 members; (e) the groups charged no fees [16, 19, 20, 26]. Support groups were facilitated by a nurse (n⫽12, 44.4%), psychotherapist (n⫽6, 22.2%), or paraprofessional (n⫽9, 33.3%).
Measures Background Data Sheet (BDS). The BDS is a 14-item questionnaire developed for this study containing five-point Likert-type, multiple-choice, and open-ended questions. Items inquired about age, ethnicity, marital status, grade level, household income, participation in other support groups within the last 3 years, participation in psychotherapy within the last 3 years, parameters of support-group participation (i.e., average meeting length, number of meetings attended, average number of members, type of facilitator, and medical treatment when joining), most helpful features of group (i.e., role models, emotional support, coping skills, sense of community, and medical information), and degree of helpfulness of the group. Medical Questionnaire (MQ). The MQ is a 21-item questionnaire, also developed for this study, comprised of five-point Likert-type and open-ended questions. Items solicited information about respondents’ history of breast cancer (i.e., months since diagnosis, stage of cancer, medical treatment received, duration of medical treatment, and duration of medication use); number of friends and relatives with cancer; number and severity of current symptoms; severity of overall pain; degree of support received from friends, friends with cancer, family, relatives, coworkers, church, breast cancer support group, oncologist, and medical caregivers; and satisfaction with medical treatment. Personality Assessment Inventory (PAI). The PAI is a 344-item measure of psychological adjustment [28]. The PAI consists of 22 scales, including 4 validity scales (Inconsistency, Infrequency, Negative Impression, Positive Impression), 11 clinical scales (Somatic Complaints, Anxiety, Anxiety-Related Disorders, Depression, Mania, Paranoia, Schizophrenia, Borderline Features, Antisocial Features, Alcohol Problems, Drug Problems), 5 scales that measure factors related to course of treatment (Aggression, Suicidal Ideation, Stress, Nonsupport, Treatment Rejection), and 2 interpersonal scales (Dominance, Warmth). Each scale was content-keyed based on conceptual and empirical literature. Items that appeared biased with respect to age, gender, race, and social desirability were deleted. United States norms
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were established for an adult sample representing demographic projections for 1995 and psychiatric patients from 69 clinical sites with diagnoses corresponding to epidemiological data. Because of their relevance to the literature on social support and cancer, the following scales were scored: Somatic Complaints, Anxiety, Depression, Alcohol Problems, Drug Problems, Suicidal Ideation, Stress, Nonsupport, Anxiety-Related Disorders, and Aggression. Respondents endorse each item as false, slightly true, mainly true, or very true. Responses are then scored on a four-point scale (0–3 if an item denotes maladjustment and 3–0 if it denotes adjustment). Raw scores for each scale are summed and then transformed into standard scores. Higher scores reflect greater maladjustment. PAI scales are internally consistent (median ␣⬎0.8), stable over 3 weeks (median r⬎0.8) and have good concurrent (median r⬎0.8) and discriminant validity (median r⬍0.3) [28].
Procedures Breast cancer patients were recruited from oncologists, facilitators of three breast cancer support groups from which established and new members were solicited, and community organizations for cancer patients in two medium-sized midwestern cities. These sources were informed about the study and requested to distribute packets containing the counterbalanced measures to breast cancer patients. After receiving an overview of the study and giving written consent to participate, volunteers were instructed to complete the BDS, MQ, and PAI anonymously at home and return the forms to the oncologist or support-group facilitator at their next appointment or meeting. After returning the completed materials, the women received a debriefing statement. Information about the study and instructions for completing the measures were presented by the first author, oncologist, or support-group facilitator.
RESULTS
The results are presented as follows: group differences on BDS and MQ items; group differences on PAI scales; and intercorrelations of PAI scales. One-way analyses of variance (ANOVAs) on BDS and MQ data(Table I) were significant for grade level [F(2, 35)⫽6.58, p⬍0.005], average meeting length [F(1, 25)⫽13.89, p⬍0.001], number of friends with cancer [F(2, 35)⫽4.35, p⬍0.05], support rating for relatives [F(2, 35)⫽4.42, p⬍0.05], and support rating for breast cancer support group [F(1, 25)⫽14.16, p⬍0.001). Duncan’s tests revealed that established members had the highest grade level. New members reported longer meetings than established members. Established members reported the most friends with cancer. New members rated their relatives as least supportive. Established members rated group as more supportive than did new members. Established and new groups did not differ on average number of members and rated the helpfulness of their support groups identically. Group differences did not emerge on number of relatives with cancer; support received from friends, friends with cancer, family, coworkers, church, oncologist, and medical caregivers; and satisfaction with medical treatment. Frequencies and percentages for BDS and MQ items are presented in Table II. Chi-square analyses of BDS responses were significant for several features of group identified as most helpful (ps⬍0.05), including coping skills [2(1)⫽4.05], sense of community [2(1)⫽5.49], and medical information [2(1)⫽5.20]. More established than new members reported coping skills and sense of community as the most helpful features of group; more new members than established members cited medical information as most helpful. Comparable proportions of established and new members indicated that role models and emotional support were most helpful. No breast cancer patient showed inconsistent responding (Inconsistency mean⫽ 62.05, sd⫽0.80), attentional difficulty (Infrequency mean⫽57.79, sd⫽0.78), a negative response set (Negative Impression mean⫽68.79, sd⫽11.47), or a positive response set (Positive Impression mean⫽54.24, sd⫽8.43) on PAI validity scales.
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A one-way multivariate analysis of covariance (MANCOVA) was conducted on PAI scale scores (Table III). BDS and MQ data on which there were significant group differences based on medical status served as covariates. Covariates were months since diagnosis [F(2, 35)⫽9.77, p⬍0.001], number of symptoms [F(2, 35)⫽5.68, p⬍0.01], severity of symptoms [F(2, 25)⫽5.07, p⬍0.01], and severity of overallpain [F(2, 35)⫽5.24, p⬍0.01]. Duncan’s tests showed that new members were most recently diagnosed, listed the most symptoms, and had the highest severity ratings for symptoms. Nonmembers reported the lowest overall pain. The MANCOVA was significant, Pillai’s [F(20, 42)⫽5.06, p⬍0.001]. Follow-up analyses of covariance were significant for Anxiety [F(2, 29)⫽18.97, p⬍0.001], Depression [F(2, 29)⫽7.68, p⬍0.005], Stress [F(2, 29)⫽20.57, p⬍0.001], Nonsupport [F(2, 29)⫽110.30, p⬍0.001], and Aggression [F(2, 29)⫽43.18, p⬍0.001]. Duncan’s tests on adjusted data revealed that Anxiety, Stress, and Nonsupport scores were lowest for established members, intermediate for new members, and highest for nonmembers. Depression and Aggression scores were lowest for established members. Several correlations were found between PAI scale scores(ps⬍0.001).1 Anxiety scores were positively correlated with Depression [r(36)⫽0.60], Stress [r(36)⫽0.63], Nonsupport [r(36)⫽0.71], and Aggression [r(36)⫽0.57] scores. Depression scores were positively correlated with scores on Stress [r(36)⫽0.58], Nonsupport [r(36)⫽0.57], and Aggression [r(36)⫽0.68]. Stress scores were positively correlated with scores on Nonsupport [r(36)⫽0.81] and Aggression [r(36)⫽0.59]. DISCUSSION
We identified demographic, medical, and psychosocial correlates of participation in a breast cancer support group. Of particular interest were the parameters of participation and features of group, perceived by members as helpful, that were associated with level of support-group participation. Of the group differences on BDS and MQ items, the higher grade level of established members suggests that they may be better informed about the potential benefits of participating in a breast cancer support group and less inclined to view participation as stigmatizing [13]. That established members rated group as more supportive than new members was expected because they attended more meetings and, presumably, received consistent support over time [16, 17, 24]. They experienced the learning of coping skills and sense of community as the most helpful features of group [24], aspects of social support that may be best suited to the needs of women at this level of support-group participation and time since cancer diagnosis [2, 10, 13, 16–18, 27]. We note, however, that number of meetings attended may not adequately represent level of support-group participation as it does not capture the qualitative aspects of participants’ experience of group (e.g., group cohesion, meaningful involvement). By contrast, new members reported longer meetings, a reflection, perhaps, of their more recent diagnosis and greater number and severity of symptoms. Thus, they may have wanted more medical information, which they experienced as the 1
A complete set of intercorrelations is available from the first author.
n ⫽ 27.
46.07 16.87 90.00 24.40 13.20 4.67 27.73 5.33 6.53 6.73 1.47 0.40 1.20 2.53 4.27 2.40 4.87 3.73 1.80 1.80 4.73 4.07 4.20 4.00
Age Grade level Average meeting length Number of meetings attended Average number of members Helpfulness of support group Months since diagnosis Duration of medical treatment Duration of medication use Friends with cancer Relatives with cancer Number of current symptoms Severity of current symptoms Severity of overall pain Support from friends Support from friends with cancer Support from family Support from relatives Support from coworkers Support from church Support from support group Support from oncologist Support from medical caregivers Satisfaction with treatment
a
Mean
Items 11.22 2.29 0.00 15.37 1.50 0.49 15.38 2.69 15.22 9.31 1.81 0.51 1.66 0.92 0.88 2.38 0.35 0.70 2.31 1.74 0.46 0.59 0.41 0.65
sd
Established members (n ⫽ 15)
45.67 14.83 105.00 1.50 12.50 4.67 6.67 3.58 0.50 0.42 0.58 1.08 2.58 3.17 4.17 1.50 5.00 3.08 3.00 2.00 3.92 3.67 3.67 3.75
Mean 6.24 2.17 15.67 0.50 1.10 0.49 3.94 2.54 1.17 0.67 1.00 1.00 2.02 1.70 0.94 2.24 0.00 0.51 1.13 1.54 0.67 0.65 0.89 0.62
sd
New members (n ⫽ 12)
8.48 2.09
15.05 2.98 4.47 1.75 0.67 0.40 1.04 1.43 0.60 2.46 0.40 0.75 1.69 1.86 0.54 0.67 0.67
24.00 5.45 2.00 1.55 0.36 0.18 0.45 1.36 3.82 2.55 4.82 3.82 2.55 1.55 3.91 3.64 4.36
sd
48.64 13.82
Mean
Nonmembers (n ⫽ 11)
Table I.—Means and standard deviations for Background Data Sheet and Medical Questionnaire items
46.68 15.34 96.67a 14.22a 12.89a 4.67a 20.00 4.82 3.32 3.24 0.87 0.55 1.42 2.39 4.11 2.26 4.89 3.55 2.39 1.79 3.11a 3.89 3.87 4.03
Mean
Total (N ⫽ 38)
8.96 2.51 12.71 12.62 1.40 0.48 15.55 2.79 10.04 6.49 1.38 0.76 1.81 1.50 1.83 2.34 0.31 0.72 1.85 1.68 2.09 0.61 0.70 0.68
sd
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Ethnicity White Other Marital status Single Married Divorced Widowed Household income $31,000 to $50,000 $51,000⫹ Other support groups Previous psychotherapy Stage of cancer Stage I Stage II Stage III Medical treatment received Surgery Chemotherapy Radiation Two treatments Three treatments
Items 93.33 6.67 6.67 66.67 20.00 6.67 26.67 73.33 0.00 6.67 73.33 20.00 6.67 20.00 6.67 0.00 66.67 6.67
1 10 2 1 4 11 0 1 11 3 1 3 1 0 10 1
Percent
14 1
Freq.
Established members (n ⫽ 15)
5 0 1 6 0
10 2 0
5 7 0 0
0 11 1 0
12 0
Freq.
41.67 0.00 8.33 50.00 0.00
83.33 16.67 0.00
41.67 58.33 0.00 0.00
0.00 91.67 8.33 0.00
100.00 0.00
Percent
New members (n ⫽ 12)
2 2 1 6 0
7 3 1
5 6 0 1
0 9 2 0
11 0
Freq.
18.18 18.18 9.09 54.55 0.00
63.64 27.27 9.09
45.45 54.54 0.00 9.09
0.00 81.82 18.18 0.00
100.00 0.00
Percent
Nonmembers (n ⫽ 11)
Table II.—Frequencies and percentages for Background Data Sheet and Medical Questionnaire items
10 3 2 22 1
28 8 2
14 24 0 2
1 30 6 1
37 1
Freq.
(continued)
26.32 7.89 5.26 57.89 2.63
73.68 21.05 5.26
36.84 63.15 0.00 5.26
2.63 78.95 15.79 2.63
97.36 2.63
Percent
Total (N ⫽ 38)
270 M. J. STEVENS et al.
a
n ⫽ 27.
Type of facilitator Nurse Psychotherapist Paraprofessional Medical treatment when joining Before treatment During chemotherapy During radiation After surgery Most helpful features of group Role models Emotional support Coping skills Sense of community Medical information
Items 53.33 20.00 26.67 6.67 40.00 13.33 40.00 20.00 86.67 53.33 60.00 53.33
1 6 2 6 3 13 8 9 8
Percent
8 3 4
Freq.
Established members (n ⫽ 15)
0 8 2 2 11
7 2 0 3
4 2 6
Freq.
0.00 66.67 16.67 16.67 91.67
58.33 16.67 0.00 25.00
33.33 16.67 50.00
Percent
New members (n ⫽ 12)
Table II.—(continued)
Freq.
Percent
Nonmembers (n ⫽ 11)
3 21 10 11 19
8 8 2 9
12 5 10
Freq.
11.11a 77.78a 37.04a 40.74a 70.37a
29.63a 29.63a 7.41a 33.33a
44.44a 18.52a 37.04a
Percent
Total (N ⫽ 38)
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Table III.—Means and standard deviations of t-scores for Personality Assessment Inventory scales Established members (n ⫽ 15)
New members (n ⫽ 12)
Nonmembers (n ⫽ 11)
Total (N ⫽ 38)
Scales
Mean
sd
Mean
sd
Mean
sd
Mean
sd
Somatic complaints Anxiety Depression Alcohol problems Drug problems Suicidal ideation Stress Nonsupport Anxiety-related disorders Aggression
56.60 48.27 47.27 44.27 44.40 43.80 43.47 38.67 47.73 42.87
5.76 5.95 4.08 5.01 3.04 2.11 3.50 3.02 6.57 3.16
59.42 55.58 54.25 43.58 43.92 44.50 49.58 42.75 50.25 59.50
2.78 7.15 4.58 .52 .29 .67 5.04 3.19 5.51 5.78
60.55 64.64 56.27 44.27 44.00 44.92 61.00 61.18 50.18 60.18
3.17 3.12 2.83 .91 .00 1.04 4.31 3.03 7.25 2.48
58.63 55.32 52.08 44.05 44.13 44.34 50.47 46.47 49.24 53.13
4.53 8.79 5.55 3.15 1.89 1.53 8.39 10.12 6.41 9.27
most helpful feature of group and as valued as coping skills and sense of community were for established members [24]. New members’ receptivity to medical information may also be related to having fewer friends with cancer and supportive relatives from whom they could obtain such information [14, 15, 17]. Differences between established and new members underscore the importance of identifying elements of social support that are valued and possibly tied to effective coping at certain levels of support-group participation and stages of cancer and its treatment; these differences have implications for the selection of interventions that match the specific needs of subgroups of breast cancer patients [1, 2, 10, 13, 16–18, 27]. In general, we also confirmed that the adjustment of breast cancer patients varied according to level of support-group participation, with established members of support groups manifesting superior adjustment relative to new members who, in turn, showed better adjustment than nonparticipants. Established members reported the least anxiety, depression, stress, nonsupport, and aggression; new members reported less anxiety, stress, and nonsupport than nonmembers. These results converge with research on the relationship between social support and cancer [1, 9–11] and studies of the impact of support groups on the adjustment of breast cancer patients [22–24, 26]. Though correlational, the findings suggest the possibility that ongoing participation in a support group may facilitate adjustment to the diagnosis and treatment of breast cancer. However, a linear, let alone causal, relationship between number of meetings attended and adjustment should not be assumed; it is conceivable that the benefits of group diminish for new members, whose defenses against the reality of cancer are being tested before they have become acclimated to group, and that premorbid factors, which predict adjustment independently of what group offers, determine support-group participation [9, 11, 12]. Although they differed on anxiety, stress, and nonsupport, new members manifested comparable levels of depression and aggression as nonmembers. As in grief work, anger and depression are reactions to multiple losses that breast cancer patients suffer [1, 3–8], which may require more time, support, and even therapeutic intervention to resolve. Future studies might inquire whether certain dimensions of adjustment are amenable to change at varying levels of participation in a breast cancer support group [27].
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At risk are nonmembers who, in spite of reporting the least pain and symptoms comparable in number and severity to established members, appeared less welladjusted, manifesting the highest levels of anxiety, stress, and nonsupport. Given the moderate to high perceived support of friends, family, relatives, oncologist, and medical caregivers, they may have been less motivated to seek the support of fellow cancer patients [15, 17]. It may be important to educate and provide incentives for nonmembers to join a support group as they may not recognize the benefits of doing so [9–11,16–18, 22–24, 26]. Group differences in adjustment cannot be attributed to demographic (i.e., age, ethnicity, marital status, and household income), medical (i.e., stage of cancer, months since diagnosis, number and severity of symptoms, overall pain, medical treatment received, duration of medical treatment, and medical treatment when joining group), psychosocial (i.e., involvement in other support groups or psychotherapy), psychometric (i.e., validity of PAI scores), and treatment-related (i.e., type of group facilitator) variables. The findings dovetail with studies linking positive outcomes to semistructured rather than nondirective support groups [26] and call for rigorous investigations of the role of friendship with other breast cancer patients, coping skills, sense of community, and experience of group support in the adjustment of women with breast cancer [13–16, 17, 18, 24]. For instance, through which pathways do these variables fulfill the need for breast cancer patients to discharge anger, anxiety, depression, and stress [1, 9, 11]? Group differences did not emerge on somatic complaints, alcohol and drug problems, suicidal ideation, and anxiety-related disorders, which may be due to the size, demographic composition, early stage of cancer, medical history, and psychological profile of the sample [2, 9–11]; the stability of PAI scales measuring these domains of adjustment [28]; and the content and format of the support groups [19, 22–26]. PAI scale scores for the pooled sample indicate understandable concern about body integrity and physical functioning [1], appropriate alcohol and infrequent drug use [2], and freedom from debilitating forms of anxiety (e.g., obsessions and compulsions) and depression [2]. Several PAI scales on which group differences emerged were correlated. The number and magnitude of intercorrelations correspond to those obtained for the normative sample [28]. Inspection of items that comprise correlated PAI scales reveals modest content redundancy. Perhaps, scale intercorrelations reflect natural covariation in dimensions of adjustment. It is reasonable to expect covariation among anxiety, depression, stress, nonsupport, and aggression based on studies of the adjustment of breast cancer patients [1, 3–8, 25, 27]. However, such covariation makes it difficult to infer the precise impact of participation in a support group. Researchers should determine whether dimensions of adjustment are influenced simultaneously or whether some are affected directly and then mediate changes in other dimensions.
CONCLUSION
We found that different levels of participation in a breast cancer support group were associated with specific demographic, medical, and psychosocial factors, the most meaningful of which were sources of support and features of group perceived as helpful. We also confirmed that the adjustment of breast cancer patients varied
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with level of support-group participation. The results underscore the value women assign to breast cancer support groups, particularly support that takes the form of coping skills, sense of community, and medical information. These findings may have implications not only for women with mainly stage I metastatic carcinoma of the breast, but for cancer patients in general as they cope with the disease and its treatment. Notwithstanding the methodological difficulties of conducting research on support groups, there is no substitute for an experimental approach. The cross-sectional design of this study compromised any presumed effects of support-group participation because of threats to internal validity (i.e., maturation, mortality, and selection). The voluntary participation of breast cancer patients also introduced potential selection bias capable of affecting adjustment independent of group. Although we attempted to control statistically for group differences on medical variables, the possibility remains that group differences in adjustment were confounded by factors antedating the decision to join a support group (e.g., prior or coexisting diseases, personality characteristics, coping resources). Investigators should design prospective inquiries in which breast cancer patients are randomly assigned to a breast cancer support group and compared to other seriously ill medical patients and matched controls. Larger and more representative samples of breast cancer patients, with group equivalence on demographic and medical factors, is desirable. More sophisticated criteria than number of meetings attended should be used in determining level of support-group participation (e.g., indices of meaningful involvement). Control should also be exerted over the content and format of support groups as well as the status of support-group facilitators. Given the stability of some PAI scales, other measures of adjustment should be administered that are more sensitive to changes produced by psychosocial interventions for cancer (e.g., Cancer Adjustment Survey). Last, a conceptual framework is needed to focus research on mechanisms whereby certain features of social support influence specific dimensions of adjustment of breast cancer patients at particular levels of support-group participation and stages of the disease and its treatment; such coherence would facilitate the systematic matching of women to the most beneficial forms of social support.
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