American Journal of Community Psychology, Vol. 20, No. 5, 1992
Bereavement Support Groups: Who Joins; Who Does Not; and Why1 Leon H. Levy2 and Joyce F. Derby University of Maryland Baltimore County
Compared widowed spouses who joined (n = 40) bereavement support groups (BSGs) during the first 13 months of bereavement with those who declined to join (n =96). Controlling for gender, age, and socioeconomic status, no differences were found for perceived levels of social support, but joiners, compared with nonjoiners, reported experiencing more stressful events and scored significantly higher on measures of depression, anger, anxiety, and subjective stress. Nonjoiners and, to a lesser extent, joiners viewed those attending groups as less self-sufficient (e.g., need help, lonely), suggesting a mildly stigmatizing image of BSGs. A dialectical model is proposed in which BSG utilization rates are seen as the product of an avoidance-avoidance conflict involving the choice between suffering emotional distress on one's own or the perceived stigma of joining a BSG. Implications for future research on participation in self-help and mutual support groups are discussed.
Many bereavement care programs of hospices and other agencies and institutions concerned with the welfare of the bereaved include bereavement support groups (BSGs) as one of their services. However, the proportion of those who join such groups appears to be small, relative to the incidence of bereavement or to those who have been invited to join them. Among hospice programs surveyed in the Baltimore metropolitan area, the estimated participation rate in support groups ranges between 10 and 25%, 1This research was supported in part by National Institute of Mental Health grant MH43843. The authors thank Jane Shanahan and Katherine McKinney for their help in the collection of the data for this study and Karen Martinkowski for her aid in its analysis. 2All correspondence should be sent to Leon H. Levy, Department of Psychology, University of Maryland Baltimore County, 5401 Wilkens Avenue, Baltimore, Maryland 21228-5398. 649
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except for one hospice that stopped offering support groups because of poor attendance, and there is no reason to believe that this picture is not representative of the scene nationally. Although these rates exceed recent population estimates of participation rates in mutual aid groups of 3.2% in the United States (Jacobs & Goodman, 1989) and 2% in Canada (Gottlieb & Peters, 1991) by a considerable amount, there are several reasons why these estimates cannot serve as bases for judging whether BSGs are being either under- or overutilized. First, BSGs differ in several significant ways from self-help and mutual aid groups, the most important of which is that they usually have designated leaders who are either professionals or trained volunteers and are not, in any significant way, under the control of their members. At the same time, however, BSGs are similar to self-help groups in the mutual support that occurs both in the course of their meetings and outside of their meetings. Second, because the bereaved represent a special population, judgment about BSG utilization rates can only be made on the basis of studies that determine the extent to which those who would benefit from these groups, and have access to them, join them. Given the complexities involved in addressing this question especially in defining who would benefit--a reasonable starting point would be to examine the reasons why some bereaved persons join BSGs and others do not, and to compare them on characteristics that might be expected to be associated with the decision to join such groups. In taking this approach, the present study also falls within the growing body of research on help-seeking (Gourash, 1978), and may thus also have some relevance for questions about the factors affecting participation in self-help groups (Powell & Cameron, 1991). Given their potential benefits, it is important to inquire why BSGs' utilization rates are not much higher. There is little research that can be drawn upon in answering this question, but several reasons suggest themselves. Perhaps the most parsimonious explanation would be that their utilization, while apparently low, may be just what it should be; for one reason or another, it may be that most bereaved individuals do not need what BSGs have to offer. It could be, for example, that most have adequate sources of social support or that they have made use of other forms of (professional) help, and so feel no need for the support provided by BSGs. Another reason may be that bereavement does not uniformly lead to serious distress (Wortman & Silver, 1989); most bereaved may not be so distressed as to feel the need for any special help. Other reasons, however, may lie in the beliefs that prospective members have about these groups and what they have to offer. Some may believe that the groups primarily foster expressions of grief and other emotions which they fear would only exacerbate their own grief. And some may not join because they believe
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that it would be a sign of weakness--that they should be able to cope with their loss by themselves. The present study was undertaken to investigate these and other possibilities through comparisons between widowed persons who had and had not joined a BSG within the first 13 months of bereavement. Views and expectations of support groups, demographic characteristics, social support, concurrent stressors, and levels of psychological distress were examined. This study is part of a longitudinal study of the course and outcome of bereavement in spouses of cancer patients who either received hospice care or conventional medical care during their terminal period. Known as the Baltimore Bereavement Project (BBP), the study follows each spouse for a period of 18 months after their loss, and in addition to hospice care includes among its independent variables, participation in BSGs, anticipatory grief, social support, and the quality of the marital relationship. Comprehensive assessments are made on entry into the study and at 6, 13, and 18 months postmortem. The present study draws upon data from the first three assessments. METHOD
Participants The participants in the BBP were 114 widows and 45 widowers recruited through four hospice programs and two oncology centers located in the Baltimore metropolitan area) This represents 56% of the 283 people whose participation had been solicited--a favorable volunteer rate compared with other bereavement studies of this kind (Stroebe & Stroebe, 1989-1990). Their mean age was 60.7 (SD = 12.1; range = 28-82); 145 were white, 12 black, and 2 Hispanic; and 72 were Protestant, 52 Catholic, 8 Jewish, 2 other, and 25 none. They averaged 3.7 (SD = 0.86) on the 5-point scale of Hollingshead's fourfactor index of social class (1975), in which 5 represents the highest class. The attrition rate at the time of the 13-month interview was 14% (23) providing an effective sample of 136 for the present study.
Measures Stressors. Upon entry into the study, which took place from 6 to 20 weeks after the spouses' death, participants were asked if anything had happened since the death of their spouse that was particularly upsetting and 3We express our appreciation for the cooperation in recruiting participants of the staff and volunteers at the Hospice Services of Howard County, St. Joseph Hospital Hospice, Stella Marls Hospice, Union Memorial Hospital Hospice, the University of Maryland Cancer Center, and the Johns Hopkins Ontology Center.
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that put an extra strain on them like an illness, a family problem, or another loss. The number of concurrent stressors was the number of events and/or problems spontaneously mentioned in response to this query without further prompting. At each of the subsequent assessments, participants were asked a similar question concerning the 6-month interval since the preceding assessment. Social Support. Since it has been thought that one of the possible reasons why individuals join mutual support groups is that they lack other support resources (Lieberman & Videka-Sherman, 1986), we compared joiners and nonjoiners on a measure of perceived social support. This was measured by the Social Support Evaluation Scale (SSES), a 17-item scale constructed for use in the BBP. 4 The following are examples of items contained in the scale: "When I am unhappy or under stress, there are people I can turn to for support"; "There is someone who can give me an objective view of how I'm handling my problems"; and "If I were sick, I could easily find someone to help me with my daily chores." The items have a four-res p o n s e f o r m a t - - a g r e e s t r o n g l y , a g r e e , d i s a g r e e , and d i s a g r e e strongly--yielding a possible range of total scores between 17 and 68. The items constituting the SSES were drawn from a pool of 20 items which included the 6-item measure of social support used by Fleming, Baum, Gisriel, and Gatchel (1982) in their study of social support and stress in the Three Mile Island disaster, and 14 items selected from the Revised Interpersonal Support Evaluation List (ISEL; Cohen, Mermelstein, Kamarck, & Hoberman, 1985; Cohen, 1988). The ISEL items were drawn so as to represent each of its four components of support: appraisal, belonging, selfesteem, and tangible. However, since neither the four-, three-, or two-factor solutions to a principle components analysis of these 20 items conducted for this study yielded factors that either resembled the four I S E L components or yielded scales with satisfactory reliabilities, we decided to use the 17 items that had loadings of .40 or higher on the factor resulting from a one-factor solution as a general measure of perceived social support. The resulting SSES thus includes all of the Three Mile Island items and has an alpha coefficient of .84. The three items not included in the SSES had all been drawn from the self-esteem support component of the ISEL. Depression. Because of its centrality in bereavement, two measures of depression were obtained. The first was the Center for Epidemiological Studies Depression Scale (CES-D; Radloff, 1977), a commonly used and well-validated measure of depressive symptomatology (Radloff & Locke, 1986). The second was the Depression-Dejection scale of the Profile of 4Copies of this scale and other unpublished instruments used in this study are available upon request.
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Mood States (POMS-D; McNair, Lorr, & Droppleman, 1981). However, because concurrent assessment correlations between these two measures over the course of the BBP study ranged between .78 and .85, with a mean of .82, we included only the CES-D in the present study. Anger. Anger, another frequent component of grief, was assessed using the Anger-Hostility scale (POMS-A) of the POMS. The POMS-A is composed of 12 items including angry, resentful, bitter, and furious. Its internal consistency (K-R20) has been found to be .93 in a study of psychiatric outpatients and its test-retest reliability ascertained in studies with outpatients waiting for treatment is moderate (.71) as expected, given the fact that its intent is to measure current mood. Anxiety. Anxiety, another element of the loss response, was measured using the Tension-Anxiety scale (POMS-T) of the POMS. The POMS-T is composed of nine items including tense, on edge, panicky, and anxious. Its internal consistency (K-R20) has been found to be .92 and .90 in two different studies utilizing psychiatric outpatients. Test-retest reliability, measured on psychiatric outpatients at intake and before treatment, has been found to be moderate (.79). The scale's correlation with both the Taylor Manifest Anxiety Scale (.80) and the Anxiety factor of the Hopkins Symptom Distress Scale (.77) are high (McNair et al., 1981), confirming its convergent validity. Subjective Stress. The Impact of Event Scale (IES; Horowitz, Wilner, & Alvarez, 1979) was utilized to assess subjective stress. The IES, a 15-item self-report instrument developed as a generic measure of subjective stress, yields two scores: an intrusion score (IES-I), representing the respondent's report of the frequency of experiencing intrusive ideas, images, feelings, and bad dreams associated with the traumatic event; and an avoidance score (IES-A), representing the frequency of various kinds of avoidance responses involving material associated with the stressful event. Examples of intrusion items are "I thought about it when I didn't mean to" and "I had waves of strong feelings about it." Examples of avoidance items are: "I tried to remove it from my memory" and "I stayed away from reminders of it." In a cross-validation study with a sample that had experienced parental bereavement, Zilberg, Weiss, and Horowitz (1982) obtained alpha reliabilities for the intrusion and avoidance scores of .79 and .92, respectively, and also found these scores to differentiate between bereaved therapy patients and bereaved nonpatients, as well as to reflect changes over time in both groups. The correlation between the two subscales was .42 (p < .01) in the original article (Horowitz et al., 1979) involving psychotherapy outpatients who had experienced a serious life event, and ranged between .15 (p > .05) and .78 (p < .01) in the study by Zilberg et
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al. (1982), whose recommendation to use the separate subscale scores was followed in the present study. Use of Professional Mental Health Services. As part of our assessment of the participants' physical and mental health, they were asked during each interview whether they had seen a mental health professional (psychiatrist, psychologist, or social worker) during the past 6 months (in their initial assessment) or since their last assessment interview (in subsequent assessments). In asking this question, we recognize that, although seeking the services of a mental health professional may be indicative of the severity of distress experienced by an individual, it may also reflect the person's threshold for help-seeking. Group Participation Interview. A structured interview was conducted with each subject aimed at determining what beliefs about support groups or other factors might have led some widowed spouses not to join one. The first four questions of the interview were essentially identical for joiners and nonjoiners: (1) Have you ever belonged to any kind of a support group? If so, what kind? (2) Have you ever known anyone who has been in a bereavement group? (3) Before attending, what was your impression of what people are usually like who join these groups?, asked of BSG joiners, or What is your impression of what people are usually like who join these groups?, asked of nonjoiners, and (4) Were you invited to join a bereavement group? By whom? The fifth question for nonjoiners only asked them to check which, if any, of 10 listed reasons (with an opportunity to give some unlisted reasons as well) led them to decide not to join a support group. The list of reasons had been distilled from earlier responses to a similar open-ended question. Responses to Question 3, regarding impressions of what people are usually like who join these groups, were coded by inductively developed categories based on inspection of a sample of responses to the question. The categories, which in most cases were paraphrases of the actual responses, were need help, weak, dependent, lonely, need support, positive, other, and none. The interrater reliability tested on a sample of 84 protocols proved to be acceptable (kappa = .76) (Siegel & CasteUan, 1988).
Procedure Participants in the BBP were recruited approximately 1 month following their bereavement. Those spouses solicited through the hospice programs were contacted by phone by hospice personnel. Participants recruited through the oncology centers were sent letters describing the study
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and informing them that they would be called by a member of the BBP team unless they requested otherwise. Those widows and widowers willing to participate were interviewed in their homes by a BBP research associate as soon as possible after they were recruited, but not before 6 weeks or after 20 weeks (M = 11.6 weeks) following their loss. The initial interview which consisted of a combination of structured interview questions and self-report measures, generally took between 75 and 100 minutes to complete. Follow-up interviews, scheduled at 6 months, 13 months, and 18 months after the death of the spouse, followed a format similar to that of the initial interview. Although participants were asked a series of questions concerning their participation in support groups during each assessment interview, the group participation interview was conducted only as part of the 13-month interview since it was assumed that most participants who would join a group would have done so by them. Since BSG participation depends initially upon attending at least one meeting to learn at first hand what the experience of participation will be like, and we were interested in what differentiates those who were willing to consider participation in a BSG from those who were not, we counted as a joiner anyone who attended at least one meeting of a BSG during the 13 months following the death of their spouse. Using this criterion, we classified 40 as joiners and 96 as nonjoiners. Of the joiners, the actual number of BSG meetings attended ranged from 1 (n = 4) to 25, with a median of 5.0; only 8% attended more than 7 meetings. RESULTS We analyzed differences between joiners and nonjoiners on measures of social support and emotional distress separately at entry and at 6 months since it seemed possible that the manifestation of these differences might vary over the course of their bereavement prior to the point where they decided whether or not to join a BSG. Therefore, two separate multivariate analyses of covariance (MANCOVAs) were computed comparing joiners and nonjoiners at entry and at 6 months, in each of which demographic data (age, sex, and SES) were entered as covariates, after ascertaining that they did not differ significantly on any of them. We also found no difference between joiners and nonjoiners in whether their spouses had received hospice or conventional medical care. Data obtained at the 13-month assessment were used to analyze differences in use of professional mental health services because it included the period when most participants would have joined their groups, thus permitting inferences concerning the relation between mental health service and BSG utilization. For this reason, as well
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Table I. Means (Standard Deviations) and Univariate F Values for Joiners (J) Versus Nonjoiners (N J) on Social Support and Distress Variables at Intake and at 6 Months Bereaved Entry Variable
SocSupporta Stressorsb Depression c Anger a Anxiety e Intrusion/ Avoidance g
6 months
J
NJ
F(1, 130)
J
NJ
F(1, 126)
57.33 (8.14) 1.08 (0.93) 23.38 (10.08) 8.03 (8.2) 13.64 (7.75) 21.40 (7.44) 11.45 (9.20)
59.18 (6.25) 0.72 (0.83) 19.02 (10.72) 6.74 (7.6) 10.70 (%54) 18.64 (8.08) 12.42 (8.27)
2.54
56.72 (7.91) 1.35 (1.03) 22.40 (11.66) 10.30 (10.3) 13.78 (8.47) 20.58 (8.53) 12.22 (8.36)
58.64 (6.37) 0.87 (0.93) 15.13 (8.99) 5.33 (5.7) 9.09 (6.34) 16.84 (8.43) 12.01 (9.98)
3.02
4.42h 4.53h 0.59 3.29 3.50 0.14
6.23i 14.77/. 12.35/ 12.06/ 5.39h 0.00
aSocial Support Evaluation Scale (SSES). bNumber of stressful events. CCenter for Epidemiological Studies Depression Scale (CES-D). dprofile of Mood States Anger-Hostility Scale (POMS-A). ePOMS Tension-Anxiety Scale (POMS-T). /'Impact of Event Scale Intrusion Scale (IES-I). glES Avoidance Scale (IES-A).
.hp < .05. 'p < .01. Jp < .001.
as the fact that only 19 participants reported having seen a mental health professional, these data were analyzed separately. Table I presents the means, standard deviations, and F values for all univariate comparisons in the two M A N C O V A s . The degrees of freedom for the entry and 6-month data analyses differ because of missing data. In the M A N C O V A for their entry data, joiners and nonjoiners were not significantly different overall, F(7, 124) = 1.67. At 6 months, however, the M A N C O V A revealed a significant difference between them, F(7, 120) = 3.30, p < .01, apparently reflecting the different courses developing in their adaptation to bereavement. The nature of this difference may be seen in the univariate comparisons. While at entry joiners differed significantly from nonjoiners in the number of stressors they reported, F(1, 130) = 4.42, p < .05), and in their level of depression, F(1, 130) = 4.53, p < .05, at 6 months joiners were significantly higher than nonjoiners on five of the six distress measures (stressors: F = 6.23, p < .01; depression: F = 14.77, p < .001; anger: F = 12.35, p < 001; anxiety: F = 12.06, p < .001; and intru-
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sions: F = 5.39, p < .05, df = 1, 126 in all cases). It is also important to note that joiners and nonjoiners did not differ significantly in their perceived support at either entry or 6 months. Use of Professional Mental Health Services. On this measure, data were missing for 3 joiners and 6 nonjoiners. Overall, only 15% (19) of the participants reported seeing a mental health professional. However, these were distributed such that a significantly higher proportion of joiners (27%) than nonjoiners (10%) reported having seen a mental health professional (Xe = 4.71, p < .05). Group Participation Interv&w. In their responses to the first two questions, joiners and nonjoiners were essentially identical: 87% of joiners and 88% of nonjoiners reported never having belonged to any kind of support group, and only 18% of the joiners and 26% of the nonjoiners had ever known anyone who had been in a BSG. Thus, it appears that joiners and nonjGfhers did not differ in either their tendencies to join support groups in general or in their familiarity with BSGs. Similarly, joiners and nonjoiners were equally aware of the availability of support groups: 80% of the joiners and 82% of the nonjoiners reported having been invited to join a BSG. The most striking difference between joiners and nonjoiners is that a significantly lower proportion of the joiners (48%) than nonjoiners (71%) reported having any impressions of people who join BSGs (Z2 = 5.70, p < .02). Because very few participants who reported impressions reported more than one, usually in the form of an adjective or a brief phrase, and what is of most interest is the positivity or negativity of their impressions, we collapsed the categories for analytic purposes into two--negative and positive or other--and sorted participants on the basis of their impressions. Of the impressions that were reported, joiners and nonjoiners did not differ significantly from each other, with the majority of both joiners (59%) and nonjoiners (77%) characterizing joiners negatively as needing help or support (47% of joiners; 53% of nonjoiners), lonely (12% of joiners; 11% of nonjoiners), and a variety of other responses that were coded either as either weak or dependent (e.g., criers, they need someone to lean on). Although the characterization of impressions of widowed persons who join BSGs as needing help or support or being lonely as negative may seem dubious at first glance---isn't that just what one would expect under the circumstances?--the tone in which these impressions were often reported, as well as the frequency with which we encountered widowed individuals who said that they felt that they should be able to cope with their bereavement on their own, convinced us that these impressions carried negative valences for those who reported them.
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Concerning nonjoiners' reasons for deciding not to join a BSG, the most frequently checked reasons were "I have enough friends to talk with without going to a group" (54%), followed by "I didn't think it would help me" (34%), and "I was concerned that the meetings would upset me" (21%). Other reasons frequently cited include "The meetings were scheduled at an inconvenient time" (19%); "I didn't think I'd have enough in common with the other group members" (18%); and "It's hard for me to talk about my personal life with people whom I don't know" (14%). DISCUSSION We feel it important to emphasize at the outset that our data on levels of distress of joiners and nonjoiners of BSGs cannot be used to draw any inferences about BSGs' effectiveness since in some cases joiners were still participating in their groups. Moreover, any evaluation of BSGs' effectiveness requires controlling for their members' and nonmembers' initial levels of distress. Without such control, as our findings suggest, research comparing members' and nonmembers' outcomes is apt to be misleading---comparisons that show no differences could in fact be evidence of the effectiveness of BSGs. It has been suggested that people who join self-help or mutual support groups do so in part either to make up for a lack of social support or because they tend to be more socially active or joiners. Concerning social support, perhaps one of our most notable findings is the absence of any difference between joiners and nonjoiners in perceived level of social support. Apparently, whatever benefit social support might confer in coping with bereavement, it may not have been sufficient for joiners, perhaps because of their higher level of distress. As to whether joining a BSG is part of a more general tendency to join groups or organizations, our findings provide no support for this hypothesis, at least with respect to the bereaved. In their responses to the first question of the Group Participation Interview, there was no difference in the percentage of joiners and nonjoiners (13 and 12%, respectively) who reported having belonged to some other kind of support group. This contrasts with the findings of two other studies. The first is Gottlieb and Peters' (1991) finding in their national survey that 57% of self-help group members, as compared with 44% of other volunteers, belong to two to five additional volunteer organizations. Because of the particular nature of BSGs (e.g., how they operate and the specific nature of the problem dealt with), however, these findings may not be appropriately comparable to ours. The second, which is more pertinent, is Lieberman and Videka-Sherman's (1986) finding in their survey of THEOS, a self-help group for widowed
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persons, that members were more likely than nonmembers to be socially active in organizations and clubs. The contrast between our findings and those of Lieberman and Videka-Sherman may be due to differences in the measures used in each study and/or in the characteristics of the two samples: theirs had been widowed for an average of 43 months, whereas ours had been widowed, on average, less than 3 months when they entered the study. In any case, BSG participation rates in the present study cannot be attributed to variations in either tendencies to join support groups or social support. This latter conclusion may need to be tempered somewhat by the finding that 54% of the nonjoiners had given as one of their reasons for not joining a BSG that they had enough friends to talk with. The question is whether that response can be taken as indicative of some level of social support which may have been sufficient to mitigate their need for the support that might be provided by a BSG. We believe the answer must be equivocal at best, because we found it commonplace in our research on self-help groups (Levy, 1976) to hear participants give as one of their reasons for joining a group that they did not want to burden their friends with their troubles, or did not think their friends would understand them. Nevertheless, since joiners did not have an opportunity to make a comparable response in the present study, the question of the extent to which joiners and nonjoiners may have differed in their perceived or actual social support must remain open. It is somewhat more uncertain whether BSG participation rates can be attributed to the general level of help-seeking tendencies among the bereaved rather than their level of distress. Although a significantly larger proportion of joiners than nonjoiners reported having made use of professional mental health services, because of the small numbers in each group who did so (10 and 9, respectively) it is not possible to reliably choose between these two explanations, especially since one would expect helpseeking to increase with increases in distress. Consideration of our other findings, however, leaves little doubt that joiners were more psychologically distressed than nonjoiners. Compared with nonjoiners, joiners were exposed to a larger number of stressors during the early phase of their bereavement, and they scored higher on measures of depression, anger, anxiety, and subjective stress, as represented by IES intrusion scores. This finding is consistent with that of Lieberman and Videka-Sherman (1986), in which they compared their THEOS sample with a normal probability sample of bereaved widows on a number of mental health measures, and found the THEOS sample significantly more distressed. It is also consistent with the finding in a study of scoliosis peer support groups that "adult group members appeared to have more serious
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cases of scoliosis than adults in the comparison group" (Hinrichsen, Revenson, & Shinn, 1985, p. 73). The absence of differences between the two groups in their IES-A scores may seem an exception to this characterization of joiners. However, after reviewing the content of the items on the two IES subscales (see examples under Measures), it occurred to us that while the IES-I subscale items generally referred to experiences over which the respondent had no control, the items making up the IES-A subscale generally referred to behaviors that were intentional or volitional. Thus, we are inclined to view the IES-A subscale as measuring avoidance coping--a means of dealing with stress--in contrast to the IES intrusion subscale which appears to be measuring a particular class of symptoms of stress. By this interpretation, the two groups would be seen as making comparable use of avoidance coping but, n e v e r t h e l e s s , suffering differing levels of distress. This interpretation of the IES-A subscale, of course, requires further study, and is in fact being addressed in another BBP study in progress. There may be two reasons why fewer joiners than nonjoiners reported having any impressions of people who join them, and why fewer of the joiners who did report impressions reported less favorable ones. The first may be that joiners were asked to recall their impressions of BSG members after they themselves had joined a group. They may have been either defensive about their prior impressions or their experience since becoming a member may have made it difficult for them to recall their prior impressions. The second explanation is that fewer joiners may in fact have had any preconceptions about the kinds of people who join BSGs, and that this led to their being more open to the idea of joining one. Our data do not provide any basis for choosing between these two explanations, but what may be more important is that both explanations imply that if people have impressions of those who join BSGs they likely view them in a negative light, as needy or weak, unable to cope on their own. It is possible that these views are cohort specific--part of the self-reliance ethic of the generation now in their 60s and beyond--and may be less widely held among younger individuals. But to the extent that it is widely held it is likely to stigmatize BSGs and could functionally depress their level of utilization. On the other hand, if joiners are suffering higher levels of emotional distress than nonjoiners, this may seem to explain why they joined BSGs--they are more in need of assistance in coping with their bereavement. This could easily lead to a Panglossian view of the present level of BSG utilizationmthat it is just what it should be. We believe that such a view is unfounded. Our findings suggest only that the probability of joining a BSG increases with increasing levels of distress; they do not speak to the
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question of the level of distress above which BSG participation would be beneficial and should be encouraged. These questions remain to be addressed by future research. That research should also address the question of whether, or the extent to which, BSG participation rates are affected by their image, as well as whether BSGs are effective in facilitating adaptation to bereavement. To return to the question of BSG utilization rates, however, we believe that our findings suggest a dialectical model in which they are the outcome of an avoidance-avoidance conflict (Miller, 1944) in which distressed, widowed individuals must choose between suffering the continuing pain of their distress on their own or the (perceived) stigmatization of joining a BSG. Thus, the answer to the questions posed in the title of this paper may be that BSG members are those for whom the emotional distress from their loss outweighs the expected distress resulting from being a BSG member. Viewed in this light, BSG utilization rates may be expected to increase as a function of either more positive views of BSGs or increased levels of bereavement distress. It seems that the dialectal model we propose to account for BSG utilization rates may be more generally operative in help-seeking (Amato & Bradshaw, 1985) and is thus likely to be involved in decisions to participate in other self-help and mutual support groups as well. Although the prevalence of these groups and of participation in them has certainly grown at an impressive rate in recent years (Jacobs & Goodman, 1989), little attention has been given to the determinants of individuals' decisions whether or not to join them. Our findings suggest that this may be a fruitful area for future research, and that it might profitably include both the images held of self-help groups and the level of distress of their prospective members. Together with research aimed at determining who is most likely to benefit from self-help and mutual support groups, such research would aid community mental health strategists in maximizing their effective utilization within the total mental health care system. REFERENCES Amato, P., & Bradshaw, R. (1985). An exploratory study of people's reasons for delaying or avoiding help-seeking. Australian Psychology, 20, 21-31. Cohen, S. (1988). Scoring the 4-alternative ISEL. Unpublished manuscript. Cohen, S., Mermelstein, R., Kamarck, T., & Hoberman, H. M. (1985). In I. G. Sarason, & B. R. Sarason (Eds.), Social support: Theory, research, and applications (pp. 73-94). The Hague, The Netherlands: Martinus Nijhoff. Fleming, R., Baum, A., Gisriel, M., & Gatchel, R. (1982). Mediating influences of social support on stress at Three Mile Island. Journal of Human Stress, 8, 14-22. Gottlieb, B. H., & Peters, L. (1991). A national demographic portrait of mutual aid group participants in Canada. American Journal of Community Psychology, 19, 651-666. Gourash, N. (1978). Help-seeking: A review of the literature. American Journal of Community Psychology, 6, 413-423.
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Hinrichsen, G. A., Revenson, T. A., & Shinn, M. (1985). Does self-help? An empirical investigation of scoliosis peer support groups. Journal of Social Issues, 41, 65-67. House, J. S., Robbins, C., & Metzner, H. L. (1982). The association of social relationships and activities with mortality: Prospective evidence from the Tecumseh Community Mental Health Study. American Journal of Epidemiology, 116, 123-140. Hollingshead, A. B. (1975). Four-factor index of social status. Unpublished manuscript, Yale University Department of Sociology. Horowitz, M., Wilner, N., & AIvarez, W. (1979). Impact of event scale: A measure of subjective stress. Psychosomatic Medicine, 41, 209-218. Jacobs, M. K., & Goodman, G. (1989). Psychology and self-help groups: Predictions on a partnership. American Psychologist, 44, 536-545. Levy, L. H. (1976). Self-help groups: Types and psychological processes. Journal of Applied Behavioral Science, 12, 310-322. Lieberman, M. A., & Videka-Sherman, L. (1986). The impact of self-help groups on the mental health of widows and widowers. American Journal of Orthopsychiatry, 56, 435-449. McNair, D. M., Lorr, M., & Droppleman, L. F. (1981). Profile of mood states. San Diego: Educational and Industrial Testing Service. Miller, N. E. (1944). Experimental studies in conflict. In J. McV. Hunt (Ed.), Personality and the behavior disorders (pp. 431-465). New York: Ronald. Parkes, C. M., & Weiss, R. S. (1983). Recovery from bereavement. New York: Basic Books. Powell, T. J., & Cameron, M. J. (1991). Self-help research and the public mental health system. American Journal of Community Psychology, 19, 797-805. Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Journal of Applied Psychological Measurement, 1, 385-401. Radloff, L. S., & Locke, B. Z. (1986). The community mental health assessment survey and the CES-D scale. In M. M. Weissman, J. K. Myers, & C. E. Ross (Eds.), Community surveys of psychiatric disorders. New Brunswick, NJ: Rutgers University Press. Siegel, S., & Castellan, N. J., Jr. (1988). Nonparametric statistics for the behavioral sciences (2rid ed.). New York: McGraw-Hill. Stroebe, M. S., & Stroebe, W. (1989-1990). Who participates in bereavement research?: A review and empirical study. Omega, 20, 1-29. Wortman, C. B., & Silver, R. C. (1989). The myths of coping with loss. Journal of Consulting and Clinical Psychology, 57, 349-357. Zilberg, N. J., Weiss, D. S., & Horowitz, M. J. (1982). Impact of events scale: A cross-validation study and some empirical evidence supporting a conceptual model of stress response syndromes. Journal of Consulting and Clinical Psychology, 50, 407-414.
Bereavement Support Groups: Who Joins; Who Does Not; and Why1 Leon H. Levy2 and Joyce F. Derby University of Maryland Baltimore County
Compared widowed spouses who joined (n = 40) bereavement support groups (BSGs) during the first 13 months of bereavement with those who declined to join (n =96). Controlling for gender, age, and socioeconomic status, no differences were found for perceived levels of social support, but joiners, compared with nonjoiners, reported experiencing more stressful events and scored significantly higher on measures of depression, anger, anxiety, and subjective stress. Nonjoiners and, to a lesser extent, joiners viewed those attending groups as less self-sufficient (e.g., need help, lonely), suggesting a mildly stigmatizing image of BSGs. A dialectical model is proposed in which BSG utilization rates are seen as the product of an avoidance-avoidance conflict involving the choice between suffering emotional distress on one's own or the perceived stigma of joining a BSG. Implications for future research on participation in self-help and mutual support groups are discussed.
Many bereavement care programs of hospices and other agencies and institutions concerned with the welfare of the bereaved include bereavement support groups (BSGs) as one of their services. However, the proportion of those who join such groups appears to be small, relative to the incidence of bereavement or to those who have been invited to join them. Among hospice programs surveyed in the Baltimore metropolitan area, the estimated participation rate in support groups ranges between 10 and 25%, 1This research was supported in part by National Institute of Mental Health grant MH43843. The authors thank Jane Shanahan and Katherine McKinney for their help in the collection of the data for this study and Karen Martinkowski for her aid in its analysis. 2All correspondence should be sent to Leon H. Levy, Department of Psychology, University of Maryland Baltimore County, 5401 Wilkens Avenue, Baltimore, Maryland 21228-5398. 649
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except for one hospice that stopped offering support groups because of poor attendance, and there is no reason to believe that this picture is not representative of the scene nationally. Although these rates exceed recent population estimates of participation rates in mutual aid groups of 3.2% in the United States (Jacobs & Goodman, 1989) and 2% in Canada (Gottlieb & Peters, 1991) by a considerable amount, there are several reasons why these estimates cannot serve as bases for judging whether BSGs are being either under- or overutilized. First, BSGs differ in several significant ways from self-help and mutual aid groups, the most important of which is that they usually have designated leaders who are either professionals or trained volunteers and are not, in any significant way, under the control of their members. At the same time, however, BSGs are similar to self-help groups in the mutual support that occurs both in the course of their meetings and outside of their meetings. Second, because the bereaved represent a special population, judgment about BSG utilization rates can only be made on the basis of studies that determine the extent to which those who would benefit from these groups, and have access to them, join them. Given the complexities involved in addressing this question especially in defining who would benefit--a reasonable starting point would be to examine the reasons why some bereaved persons join BSGs and others do not, and to compare them on characteristics that might be expected to be associated with the decision to join such groups. In taking this approach, the present study also falls within the growing body of research on help-seeking (Gourash, 1978), and may thus also have some relevance for questions about the factors affecting participation in self-help groups (Powell & Cameron, 1991). Given their potential benefits, it is important to inquire why BSGs' utilization rates are not much higher. There is little research that can be drawn upon in answering this question, but several reasons suggest themselves. Perhaps the most parsimonious explanation would be that their utilization, while apparently low, may be just what it should be; for one reason or another, it may be that most bereaved individuals do not need what BSGs have to offer. It could be, for example, that most have adequate sources of social support or that they have made use of other forms of (professional) help, and so feel no need for the support provided by BSGs. Another reason may be that bereavement does not uniformly lead to serious distress (Wortman & Silver, 1989); most bereaved may not be so distressed as to feel the need for any special help. Other reasons, however, may lie in the beliefs that prospective members have about these groups and what they have to offer. Some may believe that the groups primarily foster expressions of grief and other emotions which they fear would only exacerbate their own grief. And some may not join because they believe
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that it would be a sign of weakness--that they should be able to cope with their loss by themselves. The present study was undertaken to investigate these and other possibilities through comparisons between widowed persons who had and had not joined a BSG within the first 13 months of bereavement. Views and expectations of support groups, demographic characteristics, social support, concurrent stressors, and levels of psychological distress were examined. This study is part of a longitudinal study of the course and outcome of bereavement in spouses of cancer patients who either received hospice care or conventional medical care during their terminal period. Known as the Baltimore Bereavement Project (BBP), the study follows each spouse for a period of 18 months after their loss, and in addition to hospice care includes among its independent variables, participation in BSGs, anticipatory grief, social support, and the quality of the marital relationship. Comprehensive assessments are made on entry into the study and at 6, 13, and 18 months postmortem. The present study draws upon data from the first three assessments. METHOD
Participants The participants in the BBP were 114 widows and 45 widowers recruited through four hospice programs and two oncology centers located in the Baltimore metropolitan area) This represents 56% of the 283 people whose participation had been solicited--a favorable volunteer rate compared with other bereavement studies of this kind (Stroebe & Stroebe, 1989-1990). Their mean age was 60.7 (SD = 12.1; range = 28-82); 145 were white, 12 black, and 2 Hispanic; and 72 were Protestant, 52 Catholic, 8 Jewish, 2 other, and 25 none. They averaged 3.7 (SD = 0.86) on the 5-point scale of Hollingshead's fourfactor index of social class (1975), in which 5 represents the highest class. The attrition rate at the time of the 13-month interview was 14% (23) providing an effective sample of 136 for the present study.
Measures Stressors. Upon entry into the study, which took place from 6 to 20 weeks after the spouses' death, participants were asked if anything had happened since the death of their spouse that was particularly upsetting and 3We express our appreciation for the cooperation in recruiting participants of the staff and volunteers at the Hospice Services of Howard County, St. Joseph Hospital Hospice, Stella Marls Hospice, Union Memorial Hospital Hospice, the University of Maryland Cancer Center, and the Johns Hopkins Ontology Center.
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that put an extra strain on them like an illness, a family problem, or another loss. The number of concurrent stressors was the number of events and/or problems spontaneously mentioned in response to this query without further prompting. At each of the subsequent assessments, participants were asked a similar question concerning the 6-month interval since the preceding assessment. Social Support. Since it has been thought that one of the possible reasons why individuals join mutual support groups is that they lack other support resources (Lieberman & Videka-Sherman, 1986), we compared joiners and nonjoiners on a measure of perceived social support. This was measured by the Social Support Evaluation Scale (SSES), a 17-item scale constructed for use in the BBP. 4 The following are examples of items contained in the scale: "When I am unhappy or under stress, there are people I can turn to for support"; "There is someone who can give me an objective view of how I'm handling my problems"; and "If I were sick, I could easily find someone to help me with my daily chores." The items have a four-res p o n s e f o r m a t - - a g r e e s t r o n g l y , a g r e e , d i s a g r e e , and d i s a g r e e strongly--yielding a possible range of total scores between 17 and 68. The items constituting the SSES were drawn from a pool of 20 items which included the 6-item measure of social support used by Fleming, Baum, Gisriel, and Gatchel (1982) in their study of social support and stress in the Three Mile Island disaster, and 14 items selected from the Revised Interpersonal Support Evaluation List (ISEL; Cohen, Mermelstein, Kamarck, & Hoberman, 1985; Cohen, 1988). The ISEL items were drawn so as to represent each of its four components of support: appraisal, belonging, selfesteem, and tangible. However, since neither the four-, three-, or two-factor solutions to a principle components analysis of these 20 items conducted for this study yielded factors that either resembled the four I S E L components or yielded scales with satisfactory reliabilities, we decided to use the 17 items that had loadings of .40 or higher on the factor resulting from a one-factor solution as a general measure of perceived social support. The resulting SSES thus includes all of the Three Mile Island items and has an alpha coefficient of .84. The three items not included in the SSES had all been drawn from the self-esteem support component of the ISEL. Depression. Because of its centrality in bereavement, two measures of depression were obtained. The first was the Center for Epidemiological Studies Depression Scale (CES-D; Radloff, 1977), a commonly used and well-validated measure of depressive symptomatology (Radloff & Locke, 1986). The second was the Depression-Dejection scale of the Profile of 4Copies of this scale and other unpublished instruments used in this study are available upon request.
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Mood States (POMS-D; McNair, Lorr, & Droppleman, 1981). However, because concurrent assessment correlations between these two measures over the course of the BBP study ranged between .78 and .85, with a mean of .82, we included only the CES-D in the present study. Anger. Anger, another frequent component of grief, was assessed using the Anger-Hostility scale (POMS-A) of the POMS. The POMS-A is composed of 12 items including angry, resentful, bitter, and furious. Its internal consistency (K-R20) has been found to be .93 in a study of psychiatric outpatients and its test-retest reliability ascertained in studies with outpatients waiting for treatment is moderate (.71) as expected, given the fact that its intent is to measure current mood. Anxiety. Anxiety, another element of the loss response, was measured using the Tension-Anxiety scale (POMS-T) of the POMS. The POMS-T is composed of nine items including tense, on edge, panicky, and anxious. Its internal consistency (K-R20) has been found to be .92 and .90 in two different studies utilizing psychiatric outpatients. Test-retest reliability, measured on psychiatric outpatients at intake and before treatment, has been found to be moderate (.79). The scale's correlation with both the Taylor Manifest Anxiety Scale (.80) and the Anxiety factor of the Hopkins Symptom Distress Scale (.77) are high (McNair et al., 1981), confirming its convergent validity. Subjective Stress. The Impact of Event Scale (IES; Horowitz, Wilner, & Alvarez, 1979) was utilized to assess subjective stress. The IES, a 15-item self-report instrument developed as a generic measure of subjective stress, yields two scores: an intrusion score (IES-I), representing the respondent's report of the frequency of experiencing intrusive ideas, images, feelings, and bad dreams associated with the traumatic event; and an avoidance score (IES-A), representing the frequency of various kinds of avoidance responses involving material associated with the stressful event. Examples of intrusion items are "I thought about it when I didn't mean to" and "I had waves of strong feelings about it." Examples of avoidance items are: "I tried to remove it from my memory" and "I stayed away from reminders of it." In a cross-validation study with a sample that had experienced parental bereavement, Zilberg, Weiss, and Horowitz (1982) obtained alpha reliabilities for the intrusion and avoidance scores of .79 and .92, respectively, and also found these scores to differentiate between bereaved therapy patients and bereaved nonpatients, as well as to reflect changes over time in both groups. The correlation between the two subscales was .42 (p < .01) in the original article (Horowitz et al., 1979) involving psychotherapy outpatients who had experienced a serious life event, and ranged between .15 (p > .05) and .78 (p < .01) in the study by Zilberg et
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al. (1982), whose recommendation to use the separate subscale scores was followed in the present study. Use of Professional Mental Health Services. As part of our assessment of the participants' physical and mental health, they were asked during each interview whether they had seen a mental health professional (psychiatrist, psychologist, or social worker) during the past 6 months (in their initial assessment) or since their last assessment interview (in subsequent assessments). In asking this question, we recognize that, although seeking the services of a mental health professional may be indicative of the severity of distress experienced by an individual, it may also reflect the person's threshold for help-seeking. Group Participation Interview. A structured interview was conducted with each subject aimed at determining what beliefs about support groups or other factors might have led some widowed spouses not to join one. The first four questions of the interview were essentially identical for joiners and nonjoiners: (1) Have you ever belonged to any kind of a support group? If so, what kind? (2) Have you ever known anyone who has been in a bereavement group? (3) Before attending, what was your impression of what people are usually like who join these groups?, asked of BSG joiners, or What is your impression of what people are usually like who join these groups?, asked of nonjoiners, and (4) Were you invited to join a bereavement group? By whom? The fifth question for nonjoiners only asked them to check which, if any, of 10 listed reasons (with an opportunity to give some unlisted reasons as well) led them to decide not to join a support group. The list of reasons had been distilled from earlier responses to a similar open-ended question. Responses to Question 3, regarding impressions of what people are usually like who join these groups, were coded by inductively developed categories based on inspection of a sample of responses to the question. The categories, which in most cases were paraphrases of the actual responses, were need help, weak, dependent, lonely, need support, positive, other, and none. The interrater reliability tested on a sample of 84 protocols proved to be acceptable (kappa = .76) (Siegel & CasteUan, 1988).
Procedure Participants in the BBP were recruited approximately 1 month following their bereavement. Those spouses solicited through the hospice programs were contacted by phone by hospice personnel. Participants recruited through the oncology centers were sent letters describing the study
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and informing them that they would be called by a member of the BBP team unless they requested otherwise. Those widows and widowers willing to participate were interviewed in their homes by a BBP research associate as soon as possible after they were recruited, but not before 6 weeks or after 20 weeks (M = 11.6 weeks) following their loss. The initial interview which consisted of a combination of structured interview questions and self-report measures, generally took between 75 and 100 minutes to complete. Follow-up interviews, scheduled at 6 months, 13 months, and 18 months after the death of the spouse, followed a format similar to that of the initial interview. Although participants were asked a series of questions concerning their participation in support groups during each assessment interview, the group participation interview was conducted only as part of the 13-month interview since it was assumed that most participants who would join a group would have done so by them. Since BSG participation depends initially upon attending at least one meeting to learn at first hand what the experience of participation will be like, and we were interested in what differentiates those who were willing to consider participation in a BSG from those who were not, we counted as a joiner anyone who attended at least one meeting of a BSG during the 13 months following the death of their spouse. Using this criterion, we classified 40 as joiners and 96 as nonjoiners. Of the joiners, the actual number of BSG meetings attended ranged from 1 (n = 4) to 25, with a median of 5.0; only 8% attended more than 7 meetings. RESULTS We analyzed differences between joiners and nonjoiners on measures of social support and emotional distress separately at entry and at 6 months since it seemed possible that the manifestation of these differences might vary over the course of their bereavement prior to the point where they decided whether or not to join a BSG. Therefore, two separate multivariate analyses of covariance (MANCOVAs) were computed comparing joiners and nonjoiners at entry and at 6 months, in each of which demographic data (age, sex, and SES) were entered as covariates, after ascertaining that they did not differ significantly on any of them. We also found no difference between joiners and nonjoiners in whether their spouses had received hospice or conventional medical care. Data obtained at the 13-month assessment were used to analyze differences in use of professional mental health services because it included the period when most participants would have joined their groups, thus permitting inferences concerning the relation between mental health service and BSG utilization. For this reason, as well
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Table I. Means (Standard Deviations) and Univariate F Values for Joiners (J) Versus Nonjoiners (N J) on Social Support and Distress Variables at Intake and at 6 Months Bereaved Entry Variable
SocSupporta Stressorsb Depression c Anger a Anxiety e Intrusion/ Avoidance g
6 months
J
NJ
F(1, 130)
J
NJ
F(1, 126)
57.33 (8.14) 1.08 (0.93) 23.38 (10.08) 8.03 (8.2) 13.64 (7.75) 21.40 (7.44) 11.45 (9.20)
59.18 (6.25) 0.72 (0.83) 19.02 (10.72) 6.74 (7.6) 10.70 (%54) 18.64 (8.08) 12.42 (8.27)
2.54
56.72 (7.91) 1.35 (1.03) 22.40 (11.66) 10.30 (10.3) 13.78 (8.47) 20.58 (8.53) 12.22 (8.36)
58.64 (6.37) 0.87 (0.93) 15.13 (8.99) 5.33 (5.7) 9.09 (6.34) 16.84 (8.43) 12.01 (9.98)
3.02
4.42h 4.53h 0.59 3.29 3.50 0.14
6.23i 14.77/. 12.35/ 12.06/ 5.39h 0.00
aSocial Support Evaluation Scale (SSES). bNumber of stressful events. CCenter for Epidemiological Studies Depression Scale (CES-D). dprofile of Mood States Anger-Hostility Scale (POMS-A). ePOMS Tension-Anxiety Scale (POMS-T). /'Impact of Event Scale Intrusion Scale (IES-I). glES Avoidance Scale (IES-A).
.hp < .05. 'p < .01. Jp < .001.
as the fact that only 19 participants reported having seen a mental health professional, these data were analyzed separately. Table I presents the means, standard deviations, and F values for all univariate comparisons in the two M A N C O V A s . The degrees of freedom for the entry and 6-month data analyses differ because of missing data. In the M A N C O V A for their entry data, joiners and nonjoiners were not significantly different overall, F(7, 124) = 1.67. At 6 months, however, the M A N C O V A revealed a significant difference between them, F(7, 120) = 3.30, p < .01, apparently reflecting the different courses developing in their adaptation to bereavement. The nature of this difference may be seen in the univariate comparisons. While at entry joiners differed significantly from nonjoiners in the number of stressors they reported, F(1, 130) = 4.42, p < .05), and in their level of depression, F(1, 130) = 4.53, p < .05, at 6 months joiners were significantly higher than nonjoiners on five of the six distress measures (stressors: F = 6.23, p < .01; depression: F = 14.77, p < .001; anger: F = 12.35, p < 001; anxiety: F = 12.06, p < .001; and intru-
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sions: F = 5.39, p < .05, df = 1, 126 in all cases). It is also important to note that joiners and nonjoiners did not differ significantly in their perceived support at either entry or 6 months. Use of Professional Mental Health Services. On this measure, data were missing for 3 joiners and 6 nonjoiners. Overall, only 15% (19) of the participants reported seeing a mental health professional. However, these were distributed such that a significantly higher proportion of joiners (27%) than nonjoiners (10%) reported having seen a mental health professional (Xe = 4.71, p < .05). Group Participation Interv&w. In their responses to the first two questions, joiners and nonjoiners were essentially identical: 87% of joiners and 88% of nonjoiners reported never having belonged to any kind of support group, and only 18% of the joiners and 26% of the nonjoiners had ever known anyone who had been in a BSG. Thus, it appears that joiners and nonjGfhers did not differ in either their tendencies to join support groups in general or in their familiarity with BSGs. Similarly, joiners and nonjoiners were equally aware of the availability of support groups: 80% of the joiners and 82% of the nonjoiners reported having been invited to join a BSG. The most striking difference between joiners and nonjoiners is that a significantly lower proportion of the joiners (48%) than nonjoiners (71%) reported having any impressions of people who join BSGs (Z2 = 5.70, p < .02). Because very few participants who reported impressions reported more than one, usually in the form of an adjective or a brief phrase, and what is of most interest is the positivity or negativity of their impressions, we collapsed the categories for analytic purposes into two--negative and positive or other--and sorted participants on the basis of their impressions. Of the impressions that were reported, joiners and nonjoiners did not differ significantly from each other, with the majority of both joiners (59%) and nonjoiners (77%) characterizing joiners negatively as needing help or support (47% of joiners; 53% of nonjoiners), lonely (12% of joiners; 11% of nonjoiners), and a variety of other responses that were coded either as either weak or dependent (e.g., criers, they need someone to lean on). Although the characterization of impressions of widowed persons who join BSGs as needing help or support or being lonely as negative may seem dubious at first glance---isn't that just what one would expect under the circumstances?--the tone in which these impressions were often reported, as well as the frequency with which we encountered widowed individuals who said that they felt that they should be able to cope with their bereavement on their own, convinced us that these impressions carried negative valences for those who reported them.
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Concerning nonjoiners' reasons for deciding not to join a BSG, the most frequently checked reasons were "I have enough friends to talk with without going to a group" (54%), followed by "I didn't think it would help me" (34%), and "I was concerned that the meetings would upset me" (21%). Other reasons frequently cited include "The meetings were scheduled at an inconvenient time" (19%); "I didn't think I'd have enough in common with the other group members" (18%); and "It's hard for me to talk about my personal life with people whom I don't know" (14%). DISCUSSION We feel it important to emphasize at the outset that our data on levels of distress of joiners and nonjoiners of BSGs cannot be used to draw any inferences about BSGs' effectiveness since in some cases joiners were still participating in their groups. Moreover, any evaluation of BSGs' effectiveness requires controlling for their members' and nonmembers' initial levels of distress. Without such control, as our findings suggest, research comparing members' and nonmembers' outcomes is apt to be misleading---comparisons that show no differences could in fact be evidence of the effectiveness of BSGs. It has been suggested that people who join self-help or mutual support groups do so in part either to make up for a lack of social support or because they tend to be more socially active or joiners. Concerning social support, perhaps one of our most notable findings is the absence of any difference between joiners and nonjoiners in perceived level of social support. Apparently, whatever benefit social support might confer in coping with bereavement, it may not have been sufficient for joiners, perhaps because of their higher level of distress. As to whether joining a BSG is part of a more general tendency to join groups or organizations, our findings provide no support for this hypothesis, at least with respect to the bereaved. In their responses to the first question of the Group Participation Interview, there was no difference in the percentage of joiners and nonjoiners (13 and 12%, respectively) who reported having belonged to some other kind of support group. This contrasts with the findings of two other studies. The first is Gottlieb and Peters' (1991) finding in their national survey that 57% of self-help group members, as compared with 44% of other volunteers, belong to two to five additional volunteer organizations. Because of the particular nature of BSGs (e.g., how they operate and the specific nature of the problem dealt with), however, these findings may not be appropriately comparable to ours. The second, which is more pertinent, is Lieberman and Videka-Sherman's (1986) finding in their survey of THEOS, a self-help group for widowed
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persons, that members were more likely than nonmembers to be socially active in organizations and clubs. The contrast between our findings and those of Lieberman and Videka-Sherman may be due to differences in the measures used in each study and/or in the characteristics of the two samples: theirs had been widowed for an average of 43 months, whereas ours had been widowed, on average, less than 3 months when they entered the study. In any case, BSG participation rates in the present study cannot be attributed to variations in either tendencies to join support groups or social support. This latter conclusion may need to be tempered somewhat by the finding that 54% of the nonjoiners had given as one of their reasons for not joining a BSG that they had enough friends to talk with. The question is whether that response can be taken as indicative of some level of social support which may have been sufficient to mitigate their need for the support that might be provided by a BSG. We believe the answer must be equivocal at best, because we found it commonplace in our research on self-help groups (Levy, 1976) to hear participants give as one of their reasons for joining a group that they did not want to burden their friends with their troubles, or did not think their friends would understand them. Nevertheless, since joiners did not have an opportunity to make a comparable response in the present study, the question of the extent to which joiners and nonjoiners may have differed in their perceived or actual social support must remain open. It is somewhat more uncertain whether BSG participation rates can be attributed to the general level of help-seeking tendencies among the bereaved rather than their level of distress. Although a significantly larger proportion of joiners than nonjoiners reported having made use of professional mental health services, because of the small numbers in each group who did so (10 and 9, respectively) it is not possible to reliably choose between these two explanations, especially since one would expect helpseeking to increase with increases in distress. Consideration of our other findings, however, leaves little doubt that joiners were more psychologically distressed than nonjoiners. Compared with nonjoiners, joiners were exposed to a larger number of stressors during the early phase of their bereavement, and they scored higher on measures of depression, anger, anxiety, and subjective stress, as represented by IES intrusion scores. This finding is consistent with that of Lieberman and Videka-Sherman (1986), in which they compared their THEOS sample with a normal probability sample of bereaved widows on a number of mental health measures, and found the THEOS sample significantly more distressed. It is also consistent with the finding in a study of scoliosis peer support groups that "adult group members appeared to have more serious
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cases of scoliosis than adults in the comparison group" (Hinrichsen, Revenson, & Shinn, 1985, p. 73). The absence of differences between the two groups in their IES-A scores may seem an exception to this characterization of joiners. However, after reviewing the content of the items on the two IES subscales (see examples under Measures), it occurred to us that while the IES-I subscale items generally referred to experiences over which the respondent had no control, the items making up the IES-A subscale generally referred to behaviors that were intentional or volitional. Thus, we are inclined to view the IES-A subscale as measuring avoidance coping--a means of dealing with stress--in contrast to the IES intrusion subscale which appears to be measuring a particular class of symptoms of stress. By this interpretation, the two groups would be seen as making comparable use of avoidance coping but, n e v e r t h e l e s s , suffering differing levels of distress. This interpretation of the IES-A subscale, of course, requires further study, and is in fact being addressed in another BBP study in progress. There may be two reasons why fewer joiners than nonjoiners reported having any impressions of people who join them, and why fewer of the joiners who did report impressions reported less favorable ones. The first may be that joiners were asked to recall their impressions of BSG members after they themselves had joined a group. They may have been either defensive about their prior impressions or their experience since becoming a member may have made it difficult for them to recall their prior impressions. The second explanation is that fewer joiners may in fact have had any preconceptions about the kinds of people who join BSGs, and that this led to their being more open to the idea of joining one. Our data do not provide any basis for choosing between these two explanations, but what may be more important is that both explanations imply that if people have impressions of those who join BSGs they likely view them in a negative light, as needy or weak, unable to cope on their own. It is possible that these views are cohort specific--part of the self-reliance ethic of the generation now in their 60s and beyond--and may be less widely held among younger individuals. But to the extent that it is widely held it is likely to stigmatize BSGs and could functionally depress their level of utilization. On the other hand, if joiners are suffering higher levels of emotional distress than nonjoiners, this may seem to explain why they joined BSGs--they are more in need of assistance in coping with their bereavement. This could easily lead to a Panglossian view of the present level of BSG utilizationmthat it is just what it should be. We believe that such a view is unfounded. Our findings suggest only that the probability of joining a BSG increases with increasing levels of distress; they do not speak to the
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question of the level of distress above which BSG participation would be beneficial and should be encouraged. These questions remain to be addressed by future research. That research should also address the question of whether, or the extent to which, BSG participation rates are affected by their image, as well as whether BSGs are effective in facilitating adaptation to bereavement. To return to the question of BSG utilization rates, however, we believe that our findings suggest a dialectical model in which they are the outcome of an avoidance-avoidance conflict (Miller, 1944) in which distressed, widowed individuals must choose between suffering the continuing pain of their distress on their own or the (perceived) stigmatization of joining a BSG. Thus, the answer to the questions posed in the title of this paper may be that BSG members are those for whom the emotional distress from their loss outweighs the expected distress resulting from being a BSG member. Viewed in this light, BSG utilization rates may be expected to increase as a function of either more positive views of BSGs or increased levels of bereavement distress. It seems that the dialectal model we propose to account for BSG utilization rates may be more generally operative in help-seeking (Amato & Bradshaw, 1985) and is thus likely to be involved in decisions to participate in other self-help and mutual support groups as well. Although the prevalence of these groups and of participation in them has certainly grown at an impressive rate in recent years (Jacobs & Goodman, 1989), little attention has been given to the determinants of individuals' decisions whether or not to join them. Our findings suggest that this may be a fruitful area for future research, and that it might profitably include both the images held of self-help groups and the level of distress of their prospective members. Together with research aimed at determining who is most likely to benefit from self-help and mutual support groups, such research would aid community mental health strategists in maximizing their effective utilization within the total mental health care system. REFERENCES Amato, P., & Bradshaw, R. (1985). An exploratory study of people's reasons for delaying or avoiding help-seeking. Australian Psychology, 20, 21-31. Cohen, S. (1988). Scoring the 4-alternative ISEL. Unpublished manuscript. Cohen, S., Mermelstein, R., Kamarck, T., & Hoberman, H. M. (1985). In I. G. Sarason, & B. R. Sarason (Eds.), Social support: Theory, research, and applications (pp. 73-94). The Hague, The Netherlands: Martinus Nijhoff. Fleming, R., Baum, A., Gisriel, M., & Gatchel, R. (1982). Mediating influences of social support on stress at Three Mile Island. Journal of Human Stress, 8, 14-22. Gottlieb, B. H., & Peters, L. (1991). A national demographic portrait of mutual aid group participants in Canada. American Journal of Community Psychology, 19, 651-666. Gourash, N. (1978). Help-seeking: A review of the literature. American Journal of Community Psychology, 6, 413-423.
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