Self-help groups for HIV seropositive people.

Rehabilitation and other counselors are increasingly encountering clients who are HIV seropositive (HIV+), with or without symptoms, or who have AIDS. Angell (1991) presents data which estimates the present HIV+ population in the United States at 1 million, and growing geometrically. Many of these will also have secondary disabilities related to addictions (Devita, Hellman, & Rosenberg, 1988). Researchers have noted a plethora of psychosocial reactions of HIV+ people and of people in their environment: anxiety, denial, shock, anger, sadness, bargaining, social isolation, dangerous sexual bravado, social stigma, self-pity, fear of death, and religious persecution (Devita, et al., 1988; Hoffman, 1991; & Nichols, 1985). Suicide rates are prevalent in this population. Marzuk, Turney, Gross, Tarcliff, Morgan, Mann, and Hsu (1988) state that male AIDS patients between the ages of 20 and 59 are 36 times more likely to commit suicide than other men.

Holland and Tross (1985) have described a three-phase model of people who become infected with HIV, in which their responses are mediated by:

* medical factors (symptoms, course, and complications);

* psychological factors (personality, coping, and support); and

* sociocultural factors (stigma, custom, belief, and value).

Self-help groups can provide assistance in all three areas. According to Coates, Temoshok, and Mandel (1984), social support has a direct positive effect on the person's health. Smith (1989) points out that release from sympathetic nervous system reactions involved in anger, or those involved with the parasympathetic system, such as depression, have improved immunological function (Smith, 1989). Self-help groups can fulfill educational, moral support, spiritual, and/or religious needs and help prevent suicide through mutual support and encouragement (Beck, Carlton, Allen, Rosenkoetter, & Hardy, 1992). This article will present two self-help groups for HIV-infected people and will attempt to extract principles from the literature and from an analysis of data collected from a survey of these two groups. The authors are hopeful that this will facilitate the formation of more self-help groups.

History

Corey (1990) notes that self-help groups are like therapy groups, in that both emphasize expressing feelings, encourage support, stress the value of affiliation, and attempt to change behavior. However, he notes differences in that self-help groups are more single-issue and emphasize inspiration, persuasion, and support, whereas therapy groups employ self-understanding, behavioral reinforcement, and member feedback. Corey cites Riordan and Beggs (1987) who described how counselors may use these groups as an adjunct to their own practices. Riordan and Beggs (1988) point out that there is a subtle difference between groups calling themselves "self-help" and those who label themselves "support" groups. This difference lies in the fact that the latter is often initiated by a professional helping organization or by an individual.

Corey (1990) states that the May 1986 special issue of Journal for Specialists in Group Work deals with the myriad of special issues addressed by these groups, which include victims of post-traumatic stress syndrome, spouses whose partners are employed in stressful occupations, survivors of incest, bereaved persons, elderly victims of crime and violence, and relocated adolescents. Corey argues that the self-help groups stress a common identity due to their common life situation, and that this provides an acceptance and climate in which members may modify beliefs, attitudes, and feelings about themselves.

Kurtz (1982) makes similar claims for the success of the most important self-help group in recent decades in terms of influence--Alcoholics Anonymous (AA)--which was initiated in 1935 by two alcoholics, Bill Wilson and Dr. Robert Smith. In an existentially oriented work, he postulates that AA works because it revolves on the following principles:

* the members learn about their finitude as humans and that there are aspects of their lives that they cannot by themselves control ("essential limitation");

* the members find agreement and can put an end to their feelings of isolation in the idea of "mutual limitation"; and

* members acknowledge that they stand to gain greater personal independence through a "limited dependency" on the group and by a surrender to a higher power.

* members learn how to deal with negative feelings, such as in learning distinctions about guilt and shame, "coming clean," making amends, and other ways of dealing with these feelings and transcending them.

This paradigm has been repeated many times in other self-help and support groups such as Narcotics Anonymous, Overeaters Anonymous, and others.

Thus, though other self-help groups may not have the kind of philosophical development which is apparent in the AA movement, they all seem to share the principles of sanctuary, common identity and vulnerability, anonymity, a sharing of ways of dealing with negative feelings such as shame and guilt, and the management of a process for which people perceive a need for assistance. Two models of self-help/support groups are presented and analyzed below.

The Urban Support Group

The model for this group is located at the Center for Attitudinal Healing, a private not-for-profit corporation in Marin County, California. The center is a spiritually-oriented, nondenominational support agency for issues such as life-threatening illness. At this center, various support groups for life threatened persons meet and are supported by its volunteers as well as professional staff employed here. In typical support group fashion, center staff initiated groups for HIV+ people and their significant others.

The center was begun in 1975 to provide a peer-support group for children with cancer. It achieved national fame and when it appeared on The Phil Donahue Show it won an Emmy for the show. The center's activities were soon spotlighted by 60 Minutes and PBS's Mr. Rogers' Neighborhood, which won the Odyssey Institute Media Award for its presentation. Offering its services free of charge, the center espouses an approach to life that emphasizes that a person may choose peace rather than conflict, love rather than fear. Its philosophical bases are contained in 12 concepts which reflect the core of attitudinal healing (Allen, 1988):

1. The essence of our being is love.

2. Health is inner peace. Healing is letting go of fear.

3. Giving and receiving are the same.

4. We can let go of the past and the future.

5. Now is the only time there is, and each instant is for giving.

6. We can learn to love ourselves and others by forgiving rather than judging.

7. We can become love finders rather than fault finders.

8. We can choose and direct ourselves to be peaceful inside regardless of what is happening outside.

9. We are students and teachers to one another.

10. We can focus on the whole of life rather than the fragments.

11. Since love is eternal, death need not be viewed as fearful.

12. We can always perceive others as either extending love, or giving a call for help.

Three support groups for HIV+ people are offered at the center, one in the afternoon, and two in the evenings of weekdays. A person can belong to more than one group at a time.

Members are invited into the group on referral by professional or volunteer staff after an intake interview. Information on the groups is available at medical clinics, churches, bars, and other local gathering places of the general public. At each meeting, a general orientation regarding confidentiality and structure is given before the meeting proceeds. The groups are conducted in accordance with the following guidelines and agreements (Allen, 1988):

1. We acknowledge that our aim is to work on ourselves, to give mutual support and to practice nonjudgemental listening and sharing.

2. We recognize that each person's process is important, and not our judgement of it. Being accepted where we are makes it easier to accept rather than judge others.

3. We share what works for us and others rather than giving advice. We let other people find their own answers.

4. By risking and exposing our own emotional states, we find common experiences which allow for joining.

5. We recognize each other as unique; we recognize that each knows himself/herself better than anyone else. If we listen to the voice within, we will find our best answer.

6. We are here to support each other's inner guidance and assist one another to focus on what is meaningful to each of us rather than to confront or preach.

7. The roles of student and teacher are interchangeable; they fluctuate from one to the other regardless of age or experience.

8. We work on being with others, seeing only the light and not the lampshade.

9. We accept and acknowledge that all information shared in group is confidential.

10. We agree to keep in mind that we always have a choice between peace and conflict; between love and fear.

Meetings include information of an educational nature; but the major focus of the meetings concerns the center's mission--to provide a spiritual framework for dealing with psychosocial problems related to HIV infection.

Confidentiality within the groups depends upon a week-by-week consensual and implicit agreement. It is very rare that people are worried about being revealed, partly perhaps because of the location of the center (San Francisco Bay Area has proportionately more AIDS cases than any other community in the country).

At each group meeting, members introduce themselves. The groups have open membership (no beginning or ending dates). The fact of attrition through death is perhaps the largest problem, not only in establishing a certain cohesion and group identity but also in terms of raising the anxiety of new members who see their fellows succumb.

Groups at the center are not incorporated as such, although the parent Center for Attitudinal Healing is incorporated, enabling the center to compete for private grant funding and to employ professional staff.

The Rural Self-Help Group

The group chosen for this model is a self-help group for HIV-infected persons who live in and around Southern Illinois University at Carbondale. The U.S. Department of Health and Human Services and the U.S. Department of Education consider southern Illinois as rural when classifying the region for the purposes of research grants (Falvo, 1993). Though the authors also regard this as a more rural model, it is atypical in its rurality with regard to the educational and professional level of its members due to the proximity of the university. Also, Carbondale itself is a medium-sized city, having a population of 40,000. There are, however, several characteristics of the city and the area which render it similar to rural areas in general: The city has no public transportation, unlike most other medium-sized cities; the members of the HIV group under study in this work are permanent residents of the southern Illinois geographical area and depend more upon their own transportation to access this group than do persons in the urban HIV study group; Southern Illinois University is generally considered by other residents of the southern Illinois geographic area to be a culturally distinct enclave; and Carbondale is 90 miles from a major metropolitan area (St. Louis). For these reasons, the authors have reasoned that the HIV group members in Carbondale may be subjected to rural cultural attitudes and values as well as to the typical problems of fewer services and resources than are their counterparts in San Francisco. The data from the study, then, should be interpreted cautiously in terms of an urban-rural distinction and should be considered as preliminary.

The Carbondale group is sponsored by a corporation, set up to organize materials and expenses which do not put undue burden on individual budgets and which, with legal status, can seek assistance from outside sources (a local attorney volunteered her time and the money for the filing fee to help the group incorporate in 1991). The corporation in this model is the Southern Illinois Region Effort for AIDS, Inc. (SIREA, Inc.). Both the urban and rural models, therefore, have found advantages in incorporation.

Although a support group for AIDS existed at Southern Illinois University at Carbondale's Counseling Center, it dissolved because the scheduled time for meetings was inconvenient; driving to and parking on campus was problematic; and many people were concerned about confidentiality, since the university is the region's number one employer (increasing the possibility that a group member would run into a friend or acquaintance).

The new group was organized by the lead author, Terry Carlton, who has HIV infection; the chief aim of the group was assuring confidentiality in the referral and meeting process. A dual release of information was developed and distributed to area physicians identified as having patients who were either HIV+ or had AIDS. Referral/release of information forms were distributed in person after these physicians were sent a letter of introduction from the author's personal physician. Appointments were scheduled with each physician to present the forms and to review procedures for maintaining confidentiality. This activity led to the identification of a number of individuals interested in forming a grass roots level support group. A schedule for weekly meetings was then planned that would not conflict with members' work activities or recreational plans. By 1990, this group, calling itself "Staying Alive," had a core of regular members.

In the group's formative stages, meetings were rotated among members' homes; potluck dinners were used to promote friendship, care, and concern. In addition to providing a relaxed, comfortable atmosphere, the meetings were also used for the sharing of personal experiences and announcing treatment updates available from various sources. Members in turn would then share much of the information with their personal physicians; this gave the members a sense of empowerment and helped to forge a new interactive relationship between the group and area physicians.

By 1991, the group reworked its referral procedures. A brochure was created by members and distributed to area physicians, public health clinics, and psychologists. Interested persons were told to call "Linda" at the county health department; "Linda" would then suggest that the caller dial another telephone number and ask for 'John," who was a member of the self-help group. No records of the transaction were retained. This procedure increased anonymity. To ease members' concerns about home security and confidentiality (since meetings were held at members' homes), members developed a written agreement on confidentiality and required persons referred to the group to meet informally with two representatives of the group at a "neutral" location. This informal meeting allowed prospective new members to obtain more information on what to expect from participation in the group. It presented group representatives with the opportunity to emphasize the importance of confidentiality. Importantly, by meeting informally with two group members, the new member did not have to deal with the anxiety of coming in "cold" to a first group meeting; he or she knew that he or she would know at least two people. This procedure had two additional inadvertent payoffs: no one was refused an invitation to join who came to the informal interview, and the screening interview became a motivator for attendance (perhaps due to the perception of being accepted).

Because these new procedures resulted in increased membership, a new meeting site was needed. A member was able to arrange a site near the university campus at the Catholic Newman Center. However, this location did not work out due to the nongroup traffic and concerns about confidentiality, nor were there facilities to continue the potluck dinner tradition. Ultimately, the group's relationship with area physicians resulted in a meeting location which was: unoccupied at meeting times; easily accessible and in a neutral location; "off the beaten path," which eliminated chance encounters with non-group acquaintances; and had kitchen and dining facilities.

In addition to the weekly group meetings, there are also meetings for the corporation board and members at a location supplied by a member of the board of SIREA, Inc. With the assistance of the board (made up of local community professionals), three fund-raisers in the community have resulted in some financial resources for service program development. The business of the corporation is conducted by the board and volunteers; services are provided by volunteers recruited through the university (such as individual/group counseling provided by counselor training programs). The corporate treasurer was instrumental in having a certified public accountant complete the application for tax exempt status.

SIREA, Inc., now provides the following services to people with AIDS:

* sponsorship of the self-help group;

* a speaker's bureau on HIV infection;

* treatment information updates;

* an informal fact sheet for persons newly diagnosed;

* referrals to appropriate allied agencies;

* referrals to area healthcare providers;

* emergency financial assistance;

* coordination of services for

individuals by case managers; and

* a "buddy" program.

The number of people receiving services from SIREA, Inc., and the self-help group now exceeds 30.

Contrasting the Two Models

To provide a data-based comparison of the two models, a survey of members of both the rural and urban groups was undertaken.

Method

A questionnaire was designed by the authors, approved by the university's Human Subjects Research Committee, and distributed at group meetings to members and persons contemplating membership.

The total confidentiality of the survey was assured by having the respondents send the completed forms to the address of one of the researchers at the university in an envelope with no return address; by having no identifying information on the questionnaire itself; and by providing a cover letter with the questionnaire which guaranteed confidentiality and reassured each potential respondent of their absolute right not to respond.

The information obtained from this study is purely descriptive and preliminary. However, the questionnaires were analyzed from the point of view of face validity, and responses to them do provide data in addition to historical facts which allow some tentative hypotheses.

Results

The questionnaire sought demographic data from respondents as well as psychosocial perceptions. These data for both the urban and rural groups are shown in Table 1.

The data indicate that the urban and rural respondents are of similar average age (about 40), sex (predominantly male), sexual orientation (predominantly gay), and marital status (predominantly single), but that they differ with regard to the other categories. The rural group seems to have more unemployment, but those employed seem to have more professional occupations than the urban group. More of the rural group is on Social Security and its members have higher professional levels of education than the urban group, probably an artifact of the university's role in this community.

Turning to the psychosocial responses of both groups, this data is represented in Table 2 below.

The data in Table 2 seem to reveal the following. The rural self-help group members apparently drink more than their urban counterparts, although they appear to be light or moderate drinkers. Driving seems to be more of a factor for the rural group. Both groups seem divided in their concerns about confidentiality, both report similar symptomatology, insurance, and state support, and both rate medical treatment by doctors and hospitals as adequate (although the rural group is divided concerning the adequacy of professional services). The groups report similar psychological sequelae to HIV infection, except that the rural group appears less suicidal and guilty and has less difficulty coping.

The groups respond similarly to life expectancy and to reactions of families, friends, lovers, spouses, employers, counselors, doctors, and nurses (parenthetically, there was more missing data for these questions, perhaps revealing an ambivalence or other resistance to responding). However, the questions in this section generally appeared not to be optimal in view of the comments written in the margins of questionnaires. In view of question ambiguity, not much can be ascertained about the complex feelings regarding psychosocial reactions of members or others for both groups.

What does seem apparent from the data is that members of these groups have different personal goals regarding their membership. The rural members tend to rank more highly the social, recreational, and information/advise benefits of group membership, whereas the urban members rank emotional support and spiritual benefits foremost. This distinction is consistent with the difference between the concepts of self-help groups versus support groups, with the latter receiving professional counseling or therapeutic support and leadership. It may also tend to reflect differing values between geographically and demographically different areas or between the two types of groups themselves.

Discussion

The historical and questionnaire data yield to some interesting possibilities in view of the literature.

First of all, it seems apparent that the self-help group model seems well-adapted to rural environments, in that in these environments confidentiality is harder to protect than in urban environments. Therefore, to protect that confidentiality rural group members took special pains in terms of group procedures and meeting locations.

Second, it is apparent that groups develop their own style of becoming a dynamic unit interacting with environmental supports. They develop differing goals, orientations, procedures, etc., in conjunction with agency support, the background of members, the availability of support systems (e.g., medical) within the community, the philosophical basis that exists in a parent organization, and other factors.

Third, it seems apparent that both the support group and self-help group models are viable and they depend in their efficacy not only on the characteristics of group members, but also on the particular environmental factors in their communities. One type of group may be better under certain circumstances than another.

It is the hope of the authors that this presentation of two different models may elucidate the decision process for others interested in starting a group.

  TABLE 1
       Characteristics of HIV+ Self-Help Group Members
       by Urban and Rural Environments

                  URBAN                 RURAL
AGE               41.6 yrs              40.0 yrs
SEX               8 Male 1 Female       12 Male 0 Female

SEXUAL
ORIENTATION       7 Gay                 10 Gay
                  1 Bisexual             1 Bisexual
                  1 Heterosexual         0 Heterosexual

MARITAL STATUS    0 Married              0 Married
                  9 Single               9 Single
                  0 Divorced             2 Divorced

RACE              0 Black                1 Black
                  0 Hispanic             0 Hispanic
                  9 Caucasians          11 Caucasians
                  0 Asians               0 Asian
                  0 Other                0 Other

EMPLOYED          8 yes 1 no             5 yes 7 no

EMPLOYMENT
TYPE              1 Professional         4 Professional
                  1 Technical            1 Technical
                  3 Sales or Clerical    1 Sales or Clerical

SOURCE OF
INCOME            7 Employment           5 Employment
                  1 Social Security      4 Social Security
                                         1 Friends or Relative
                                         1 School Loan

EDUCATION         3 Associate Degrees    1 Associate Degrees
                  3 Bachelors Degrees    4 Bachelor Degrees
                  3 Graduate Degrees     7 Graduate Degrees

Note: Figures that do not add up to the number of respondents are explained questionnaires.

  TABLE 2
      Psychosocial responses of HIV+ self-help group members
      by urban and rural environments

                                    URBAN             RURAL

Report of drinking
yes                                   2                 8
no                                    7                 4

Amount of drinking
Light                                 0                 5
Moderate                              1                 3
Heavy                                 1                 0
Report of symptoms
Have symptoms                         6                 7
No symptoms                           3                 5
Description of symptoms
Stable                                5                 3
Minor disruption                      1                 7
Major debilitation                    2                 1
Other                                 0                 1

Rating of insurance
adequacy
Adequate                              8                 8
Not adequate                          1                 4
Receipt of state support
Receive support                       4                 6
No support                            5                 6
Rating of medical
treatment by doctors
Adequate                              8                10
Not adequate                          1                 1
Rating of medical
treatment by hospitals
Adequate                              8                10
Not adequate                          1                 0
Problems reported
with accessibility
of professional services
(other than doctors)
yes                                   1                 6
no                                    8                 6
Psychosocial sequelae
to HIV+ reported afraid
yes                                   4                 6
no                                    5                 6

Depressed
yes                                   5                 7
no                                    4                 5
Suicidal
yes                                   5                 1
no                                    4                11
Angry
yes                                   3                 4
no                                    6                 8
Guilty
yes                                   3                 0
no                                    6                12
Positive
yes                                   7                 8
no                                    2                 4
Emotional roller coaster
yes                                   4                 7
no                                    5                 5
Difficulty coping
yes                                   4                 2
no                                    5                10

Expectancy of how
HIV+ will affect life span
Very little                           0                 0
May affect                            6                 6
Don't expect long life                3                 6
Reactions of families
Supportive                            7                 8
Fearful
Rejecting
Don't know                            2                 4
Other

Reactions of friends
Supportive                            8                11
Fearful
Rejecting
Don't know
Other                                 1                 1

Reactions of lovers
Supportive                            3                 5
Fearful                                                 1
Rejecting
Don't know
Other                                                   1


Reactions of Spouse
Supportive                            2                 1
Fearful
Rejecting
Don't know
Other
Reactions of Employers
Supportive                            3                 4
Fearful                                                 1
Rejecting                                               5
Don't know                            1
Other
Reactions of
Counselors/Therapists
Supportive                            6                 6
Fearful
Rejecting
Don't know
Other
Reactions of Doctors
Supportive                            7                11
Fearful
Rejecting
Don't know
Other                                 1
Reactions of Nurses
Supportive                            8                11
Fearful
Rejecting
Don't know
Other
Reactions of
General Public
Supportive                            4                 1
Fearful                               1                 2
Rejecting                                               2
Don't know                            1                 3
Other                                 5                 1

Member of a
support group?
yes                                   9                10
no                                    0                 2

For what purposes are
you a member of a
support group?
Social recreational
yes                                   4                 9
no                                    5                 3

Emotional support
yes                                   9                 5
        0
no                                    0                 7

Information/Advise
yes                                   4                 9
no                                    5                 3

Spiritual
yes                                   8                 0
no                                    1                12

What distance do you
travel to support group
meetings (average)?                 2.5 miles        22.4 miles
Do you drive?
yes                                   8                11
no                                    1                 1

Is there bus transportation
available where you live?
yes                                   2                 0
no                                    0                 2

Is transportation a
problem in life activities?
yes                                   0                 1
no                                    2                 2

Do you have concerns
about confidentiality
with your HIV?
yes                                   4                 6
no                                    5                 6

Mr. Carlton was formerly with Jackson Community Workshop, Murphysboro, Illinois. Dr. Beck is Assistant Professor, Rehabilitation Counselor Programs, at Southern Illinois University at Carbondale. Dr. Allen is a professor at Southern Illinois University at Carbondale.

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