HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
THIS MATERIAL PROVIDES an overview of how a peer-led support group was formed for HIV-negative gay and bisexual men in Boston in 1991. I hope you can use our group as a model for creating a support group in your own community.
The Boston HIV-Negative Support Group was founded in March 1991 by Jim Brinning, Gay Male Health Educator at the AIDS Action Committee of Massachusetts, with the assistance of Robb Johnson, Coordinator of the Living Well Series at the Fenway Community Health Center of Boston.
Brinning was alarmed to find that men who had once tested HIV-negative were subsequently testing HIV-positive. Johnson recognized that providing workshops and support for the infected did not address the whole epidemic. Together they felt it was important to target educational efforts specifically toward HIV-negative gay and bisexual men, to offer them support in adopting and maintaining behaviors that help them stay HIV-negative.
After a few successful meetings had taken place, those who were interested in formalizing the support group gathered to hammer out a mission statement that reflects the purpose of the group:
The Boston HIV-Negative Support Group provides a forum in our community in crisis for HIV-negative gay and bisexual men to receive educational and social support. Educational support to encourage informed decision-making will include discussions about HIV transmission, safer sex, and testing. Social support will include peer-led explorations of the social and emotional issues that arise from knowing one's HIV-negative status.
Our mission statement mentions both educational and social support because we feel each component is insufficient alone. Social support without education does not allow us to make informed choices about safer behavior. Education without social support can likewise fail, offering us information but no opportunity to discuss how to implement it in our lives.
People participate in the support group for a variety of reasons. Some have just been tested and are curious to hear about others' experiences. Others are considering retesting. Some are single and wondering how to date or have sex as HIV-negative men. Others are in relationships, sometimes with HIV-positive partners. Some are grieving the loss of friends and lovers to AIDS. Most participants are from Boston, but some come from suburbs, and others come from as far away as Cape Cod, New Hampshire, and Rhode Island.
Here is what some participants said about why they participate:
I find in some mixed groups, as soon as HIV-positive men find out you are HIV-negative a wall goes up; they back off, stop talking. I guess there is a feeling that the safety of the situation goes away. You find that a difference of serostatus does make a difference.
When I am in groups that include HIV-positive men, I sometimes feel I have to withhold comments or questions that might be offensive to people with HIV.
The level of urgency, emotional intensity in groups with HIV-positive men can sometimes be overshadowing. Any issues that HIV-negative men have take a back seat, are not as significant.
I like the feeling that I am not isolated. I sometimes feel like everyone in the gay community is infected or dying, and I need to know that others like me are learning to survive.
I want to hear about safer sex from other HIV-negative men, because they are in the same position as I am. To hear about safer sex from an HIV-positive man, while welcome, may not seem applicable to me. I understand the motivation of an HIV-positive man to help me avoid becoming HIV-positive, but I still prefer to speak with others who are negative and struggling with my issues.
Seroconversion is a major concern of mine. I find the support group helpful as a point of identification and support.
The free drop-in group meets from 7 to 9 p.m. on the third Thursday of every month. Attendance has fluctuated between 20 and 40. New participants are always welcome, and there is no fee.
During 1991 our meetings took place at a church in Copley Square, Boston. The AIDS Action Committee made donations to the church for the use of the space. Since 1992 the meetings have been held at the new facilities of the Fenway Community Health Center.
There are two kinds of meetings. The first is a general discussion. The group divides into smaller groups for informal discussions led by volunteer facilitators. Groups of six to eight seem to work best. After about an hour and three quarters, these small groups reconvene to spend 15 minutes summarizing the issues that were raised. Frequently this leads to further discussion.
The other kind of meeting begins with an opening presentation by a speaker or panel on a specific topic. These presentations are usually brief, lasting between 20 and 40 minutes. The rest of the meeting is spent in small discussion groups, which may begin by responding to the presentation topic if they wish.
These two meeting structures reflect the two-fold approach implicit in our mission statement. The general discussions embody social support, and the presentations embody educational support. In practice, there is often little distinction between what is "social support" and what is "educational support." In the past we strictly alternated the two kinds of meetings. Recently we have planned more discussion topics, and we hope to keep them limited to the first half hour, to allow ample time for small-group discussion.
A steering committee of half a dozen volunteers organizes the meetings. The steering committee meets every few months, usually for an hour before a monthly meeting. The steering committee reviews the evaluations that have been handed in by participants and discusses suggestions for future meeting topics. When planning future meetings, the steering committee members assign one person to coordinate each meeting. Coordinators are responsible for obtaining speakers if a discussion topic requires it. They also make sure there are enough small-group facilitators available and help run the meeting.
Steering committee members often volunteer to facilitate the small-group discussions. One responsibility of the facilitator of small groups is to ensure that basic ground rules are followed.
In order to help the meetings run smoothly, we have implemented a few ground rules that we state at the outset of each meeting. These ground rules will be familiar to anyone who has worked in group settings, such as encounter groups, therapy groups, or recovery groups.
First, what is discussed at the meetings is confidential. We encourage people to share what they have learned with others, but to do so in a way that doesn't identify any participant without his consent. Often people give first names only. This ground rule is intended to preserve people's privacy and to encourage them to be frank in discussions.
Second, we ask people to speak from their own experience and refrain from attacking others. The discussions often raise controversial issues. This ground rule encourages openness in sharing views and discourages people from harming each other. It is the responsibility of the small-group facilitator to see that no participant dominates the discussion or uses the forum as an opportunity to attack others.
Meetings have included presentations and discussions on a range of topics. Appendix B contains open-ended discussion questions that we have used to encourage conversation in some of these areas:
When the HIV-Negative Support Group was formed, we feared there would be some opposition from HIV-positive gay men. We feared they might ask, "Why would there be such a group? What could you possibly talk about?" How could we presume to have legitimate needs?
Here is how some participants addressed this concern:
Some HIV-positive men see a group that is restricted to HIV-negative men as separatist, divisive, or elitist. I see it as a way for us to address our own issues, so that we are better able to be more inclusive. I feel stronger and better able to respond to my HIV-positive friends after I have been offered an opportunity to vent some emotions and feelings among HIV-negative men.
I resent the fact that support groups for HIV-positive gay men are seen as natural and healthy, whereas support groups for HIV-negative gay men are seen as offensive, self-absorbed, or counterproductive.
By having a place where I can exorcise some issues, I am more prepared to deal with my HIV-positive friends from a calm, interested perspective. I am less likely to worry about "bringing up" inappropriate issues with my HIV-positive friends, because some of these issues I can deal with in a different location.
I think that HIV-negative men first have to identify their own issues before they can productively address them with their HIV-positive friends. We should recognize our anger, resentment, and despair so that we can move beyond it.
The group is meant to meet the needs of the HIV-negative so that we can be a part of our community, not set ourselves apart from it. We anticipated backlash from HIV-positive men, but such backlash has been reported only anecdotally.
One way that we have attempted to involve HIV-positive men is to invite them to participate in at least one meeting each year. For example, one meeting involved three positive-negative couples discussing their relationships. Another meeting presented a panel of speakers who had seroconverted.
Another obstacle we faced is that the drop-in nature of the group causes the discussions to lack continuity. Newcomers often have to unburden themselves of pressing issues that have already been handled by others who have been attending meetings regularly. Ongoing participants dislike having to explain their positions over and over. We are beginning to address this obstacle by dividing into small groups that accommodate those who are committed to attending regularly and those who are just "testing the waters." We call one the "ongoing" group and the other the "newcomers" group.
Recently, an additional response to the lack of continuity inherent in our drop-in group has been devised. A closed, time-limited group run by two professional HIV-test counselors is offered on a monthly basis at the Fenway Community Health Center. It consists of three two-hour sessions spread over three weeks. Based in structure on similar groups already in place for people who have found out they are HIV-positive, this new group is more directed and less freewheeling than the ongoing monthly support group.
Another obstacle we are just beginning to face is the complexity of the role of group facilitator. In the time-limited group, the facilitators are professionals, and their approach is more psychologically informed. In the monthly peer-led group, the facilitators are volunteers, often with little training, and sometimes preoccupied by their own needs for support. How much should they disclose about their own lives? Should they participate as equal members or take a more neutral role as conversational mediators? We are currently developing a training program for facilitators and exploring ways that volunteer facilitators can rotate out of that role to become participants on a regular basis. How this will influence later facilitation remains to be seen.
The meetings are advertised in the local gay newspaper, as well as in the newsletters and telephone information of both sponsoring organizations: the AIDS Action Committee and the Fenway Community Health Center. Fliers that list topics for the upcoming six meetings are posted and handed out to participants. Word-of-mouth advertising has brought many new participants.
Annual letters describing the mission of the group are sent to the HIV-test sites administered by the Department of Public Health in Massachusetts. Fliers to photocopy are included in these mailings.
We have also created a brochure that discusses issues that face people receiving an HIV-negative test. The brochure lists the discussion group as a resource and offers quotations from participants on a range of topics that confront HIV-negative gay and bisexual men. This brochure is available at HIV-test sites.
Having fliers and brochures available when people receive negative test results is useful for HIV-test counselors, especially when they see repeat testers who might benefit from more ongoing support than a posttest counseling session allows. Some of our recent participants have been referred from HIV-test sites in this way.
Here are some comments from participants about the usefulness of the group:
A support group for HIV-negative men helps us realize that it's not inevitable to get HIV. It's not a train that's going to catch up to us and run us over.
I find that participating in the support group has made it easier to reenter sexual relationships, to communicate more effectively about safer sex. After hearing the struggles and successes of other men, I am more prepared to negotiate safer sex.
By speaking with other HIV-negative men and HIV-positive men who formerly tested negative, we learn to see what forces impel us to engage in unsafe behavior, and what obstacles block us from behaving in safer ways.
I find that participating in the support group has made it easier for me to get retested. I feel that I have a support system.
I appreciate the support I get from others in helping me stay HIV-negative. I like knowing that others support me in my decision to be healthy, and that I can learn from them. It is important for us to voice our decisions to stay uninfected. That is an important first step in safer behaviors.
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Conclusion · Appendix A B C · Notes · Contributors