Positive Perspectives: A qualitative examination of issues facing HIV positive gay men in Toronto
Gay Men's Health Promotion
A special thanks to ACT volunteer John Hart for transcribing focus group proceedings.
Background and Purpose
A series of two focus group discussions and an additional one-on-one interview with HIV positive gay men were conducted by the AIDS Committee of Toronto (ACT) in late November 1997. The purpose of these groups was to find out from these men their understanding of safer sex, their relationships with HIV positive and HIV negative gay men, as well as suggestions for improved services for this population at ACT. These groups were also used to gage reactions from these men to the promotion of services for HIV negative gay men (specifically counselling and support groups) that occurred beginning in the spring of 1997.
The objectives of these focus groups and interviews were to:
Ÿ determine what is meant by ‘safer sex’ for HIV positive gay men in Toronto.
Ÿ determine attitudes and beliefs held about HIV negative and HIV positive gay men.
Ÿ explore the phenomenon of unprotected anal sex (‘bare back’ sex) amongst HIV positive gay men.
Ÿ probe for suggestions about new programmes and services that ACT could develop and offer for HIV positive gay men.
A few notes on qualitative methodology:
As a research methodology, focus groups are a means of generating discussion and eliciting synergistic insights into particular questions. The purpose of a qualitative methodology such as focus groups is not to test pre-determined hypotheses, but rather to elicit the perspectives of individual participants. Generalizing from a “representative sample” of gay men to gay men in general is not possible; nor is it necessary for the purposes of this research. Rather, the reader should assume that these insights are illuminating and, therefore, directional.
1) For many HIV positive gay men, ‘safer sex’ is interpreted to mean not only condom use for anal sex , but also disclosure of a positive sero-status to sexual partners. Disclosure of status varied greatly: some participants disclosed to all potential sexual partners while others disclosed only to those for whom a relationship was possible. Several participants stated that they did not disclose their status to any sexual partners.
2) Many HIV positive individuals felt that a gap existed between them and their HIV negative counterparts. Many had experienced rejection from HIV negative friends and/or partners and a lack of understanding of the complex challenges facing people with HIV.
3) HIV positive gay men generally supported ACT providing support services to HIV negative gay men, provided that these services were limited to counselling and support groups.
4) Participants were very familiar with the term ‘bare back’ sex. While some men were opposed to the notion of unprotected sex amongst two HIV positive people, others believed that ultimately it was a choice for two people to make.
5) Of the many issues facing HIV positive gay men, the issue of returning to work was paramount for many. With improved health (due to new treatment strategies), many felt both the desire and the pressure to return to the work force.
6) Participants believed that ACT should offer daytime support/drop in groups for HIV positive people.
A total of 19 HIV positive gay men participated in two focus group discussions held over two nights at ACT. An additional man participated in a one-on-one interview also held at the ACT offices (total sample N = 20).
Participants were recruited through an ad placed in XTRA! (the local lesbian and gay newspaper) and flyers posted on the ACT Information Boards located in gay community venues. The ad and flyer stated: “Are you an HIV positive gay man? We want to hear from you”. Payment for participation was $20.00. Potential participants were asked to contact John Maxwell at the AIDS Committee of Toronto where they were screened for suitability in this study. They were asked if they preferred to be in a group discussion or a one-on-one interview.
A total of 27 individuals responded to the ad/flyer. Of these, 22 were scheduled into the focus group discussions and one man chose to participate via a one-on-one interview. The mean age for participants was 34, with the range from 21 - 49.
Focus groups and one-on-one interviews were facilitated by John Maxwell (Gay Men's Health Promotion Co-ordinator) and Mike Willan (HIV Health Promotion Co-ordinator). Focus groups were audio taped and transcribed.
After brief introductions and an outline of the purpose of these discussions, participants were asked (as an icebreaker exercise) to briefly tell why it was they came to the group. Many of the participants mentioned that they were intrigued by the ad for the focus group - particularly the part that mentioned that the group would be an opportunity to discuss the meanings of safer sex and rejection from sexual partners.
Participants were then asked a series of questions that aimed to capture their perceptions and thoughts about safer sex and their experiences of rejection as a result of their positive sero-status. They were also asked to comment on services that ACT provides for HIV positive individuals and make suggestions for new or enhanced services.
The Meanings of Safer Sex:
Participants were asked what constituted safer sex for them. Most agreed that it was important to use condoms for anal sex (both insertive and receptive) in order to prevent the transmission of HIV. As one participant stated “It's important to protect the other person, even if you don't disclose (your HIV status). I would feel guilty if I ever gave them something”. Some participants chose not to engage in anal sex. Several participants were concerned about the possibility of catching other sexually transmitted diseases and were cautious with respect to the activities that they would engage in.
Disclosure of a positive HIV status was also associated with safer sex for many of the participants. Many felt that it was their obligation to disclose their HIV status to all sexual partners. Others felt that disclosure depended on the situation: in an anonymous sexual encounter (such as in a bath house), disclosure wasn't necessary, however if sex might lead to a relationship, or some type of emotional attachment, then disclosure would occur. As one man stated: “I told my lover on the first night, just to let him know; to be honest with him. If you lie once, then those lies just become compounded”.
Several men mentioned that they had negative responses from men to whom they disclosed their HIV status. One man recounted his story of disclosing to a sexual partner who “freaked out” on him. Another recounted a story of his disclosure - while on a date - which resulted in the other partner ending the date: “it bothered me, but at least I educated him by telling him that most guys wouldn't have told him. I figure I'm better off without him”.
Participants were asked whether they felt that the pressure was on them (as HIV positive individuals) to initiate condom use. While most stated that the responsibility was equally shared by both partners, many did feel the added pressure to ensure that safer sex occurred. As one man stated: “It isn't necessarily more important who initiates condom use, but ultimately the responsibility for condom use lies with the person who is HIV positive”.
Discussion turned to unsafe sex: some participants noted the rise in unsafe sex. As one man stated: “I see these young people who want to have unsafe sex, it's as though they have some death wish. Maybe they think that people who are HIV positive are more ‘together’. They don't see all of the negative things about having HIV”. As another man stated: “Some get infected (with HIV) so they won't have to continually worry about the possibility of one day getting infected”.
Alcohol and Drug Use:
Participants were asked whether they believed that alcohol and/or drug use affected their ability to practice safer sex. Most agreed that alcohol and drugs made them feel less inhibited. For some, this had caused them to get into situations where their safer sex guard could be ‘let down’. One man noted that he had met a man at a bar who got so drunk that “I could have done anything to him”. One man recounted a story where someone had got him high so that they could have unprotected sex. Still, others stated that “regardless of how ripped I am, I will not infect someone who is uninfected”.
Some men stated that they have tried to moderate their drug and alcohol use as a result of their HIV positive diagnosis.
Relationships between HIV Positive and HIV Negative Gay Men:
When participants were asked how they see HIV negative gay men, common responses were both “lucky” (for remaining HIV negative) and “out of touch”. Some respondents felt that many HIV negative gay men were still ignorant about HIV, and were afraid of HIV positive gay men. As one man stated:
They're out of touch - people that I thought were well educated (about HIV) and aware were actually ignorant. They don't have a clue about the stresses of taking drug treatments, not being able to work. And, they get freaked out over sex.
Several participants recounted situations where they had been criticized for not working by HIV negative men. One man recounted a story when he was out at a bar, and an HIV negative acquaintance (commenting on the participants' beer) stated “oh, I guess I bought you that beer” in reference to the fact that the participant was receiving Family Benefits. This prompted other participants to state that they are often made to feel like “freeloaders” and are resented by some HIV negative people.
Other participants were conscious of the impact that HIV has had on HIV negative gay men: the losses of friends and partners, and the worrying about the possibility of getting HIV. As one man stated: “they're still dealing with problems even though they aren't infected: they are affected.” As one man stated: “I get more support from my HIV negative gay friends than my (HIV) positive friends”.
Most participants felt that a gap existed between HIV negative and HIV positive gay men. As one man stated: all the HIV negative couples seem to move out of the ghetto (Church/Wellesley area), so that we really are like two different communities.
Discussion then turned to the notion of an HIV positive community: here there was great variance amongst participants as to the existence of such a community. Many believed that such a community existed, largely as a result of the programmes and services offered by AIDS service organizations. Other participants felt that this really didn't constitute a community: “I don't feel it's a real community. The only things that bring us together are AIDS organizations and other charities. A real community revolves around other, more social things.”
Services for HIV negative gay men:
Participants were asked to comment on HIV negative gay men receiving services at ACT. Most men were comfortable with these men accessing services, but with the following qualifier:
It would depend on the service: support groups, no problem, as this will help them. However, they shouldn't be allowed to access those services that are currently offered only to people with HIV (like the Drives programme, Insurance Clinic).
It was surprising, the amount of support that the participants had for support services being offered to HIV negative gay men. Comments such as “it's a good step” or “it's about time” were common. Many felt that such support would not only help HIV negative gay men deal with issues of grief and loss, but could help to break down some of the barriers that exist between HIV positive and HIV negative gay men. As one man stated: “We ultimately are one community, we can't ignore each other.”
Gap between HIV positive and HIV negative gay men:
Most participants acknowledged the gulf that exists between gay men of differing sero-status. Many believed that there seemed to be more of an openness that exists between HIV positive gay men: they discuss treatments and their health, and this doesn't usually happen when they are with HIV negative gay men:
Those of us with HIV talk about common issues. With HIV negative friends, the only time we talk about AIDS is when I bring it up, otherwise we don't talk about AIDS at all. They're really much less informed about things than I thought. They may know about (HIV) prevention, but that's it.
As another man stated:
I've changed and they haven't. They talk about their careers, about RRSPs. My world is so different from theirs, we have little in common. I feel really apart (from HIV negative gay men).
The notion of a gap existing between HIV positive and HIV negative gay men seemed to be dependent on whether or not one was still working. As one man stated: “My experience has been different. I'm still working, still quite healthy. I'm HIV positive but I feel that I have more in common with HIV negative people.”
When asked what could be done to narrow this gap, participants suggested that HIV negative and HIV positive gay men need to begin talking to one another. HIV negative gay men need to become more aware of the issues facing HIV positive gay men. This could be achieved through discussion groups (where HIV negative and HIV positive gay men could come together), and increased visibility of this issue within the gay community (through educational messages). Some participants felt that HIV positive gay men needed to become more visible in the community rather than “fade into the woodwork” and educate the broader community. Other participants questioned whether it was the responsibility of HIV positive gay men to take on this work.
Unprotected Anal Sex (bare back sex):
Participants were asked whether they were familiar with the term “bare backing”. Only two participants hadn't heard of this term before. One participant mentioned that he had first heard this term while using the phone sex lines about one year ago. Many men were at a loss as to why this was emerging within the community. Some participants believed that unprotected anal sex was on the increase amongst younger gay men; men who haven't experienced the losses of friends and partners to AIDS, or amongst those who felt that the new drug treatments were a “cure” for HIV.
Participants generally held very strong views about bareback sex between HIV positive people. Some felt that not enough was known about re-infection with HIV or resistance to drugs to condone bare backing. Others believed that ultimately this was a choice between two consenting people:
I always practice safer sex, but if it's with someone who is also HIV positive, and he is OK with it, then it will happen. For me, it revolves around the sero-status of the partner, and what they feel comfortable with.
As another man stated, “some guys are regularly into it. It's their decision. They've probably been re-infected with many different strains (of HIV). But, if they want it...”.
Many saw the decision to ‘bareback’ linked to disclosure of one's HIV status. The problem arises if someone lies (and says they are HIV negative) out of fear of rejection from a potential sex partner. It was generally agreed that there has not been much, if any, discussion about bare back sex in the gay community, although everyone knows that it is occurring.
Service for people with HIV at ACT:
There seemed to be a general level of satisfaction with the kinds of practical services that ACT was providing to people with HIV : counselling, support groups and workshops, the Drives and Moves Programme.
Many felt that ACT needed to move its programmes and services out into the community, to “revitalize its community presence”. Some felt that ACT had shied away from a presence in the gay community, by focusing on “big corporate fund-raising events” at the expense of visibility in the community.
Participants felt that ACT needed to make better use of the ways in which it communicates programmes and services within the gay community. Many felt that the ACT one-page advertisement in XTRA! needed to be more “eye-catching”. Others felt that the ACT Information Boards often were “cluttered with small flyers” that were difficult to read. Suggestions included having the boards focus on one issue or service for a period of about a month, and creating more eye-catching flyers.
Participants also believed it would be helpful if ACT offered more of its programmes during day time hours. Suggestions included support groups for people with HIV and a drop-in group for people with HIV.
Of particular interest from almost all participants was the creation of programmes and supports for people who are considering returning to the work force. Many of the participants expressed a desire to return to work, but were faced with many challenges:
How do I explain that I haven't worked for five years? What happens if I get sick? Do I have to disclosed my HIV status to my boss? What do I do for drug coverage? I don't feel that I have the skills to make me employable.
Participants believed that ACT should be developing programmes and services to assist people with HIV who are considering a return to the work force.
1) ACT should develop an educational campaign that acknowledges and attempts to lessen the gap that exists between HIV positive and HIV negative gay men in the community. Concurrent with the release of such a campaign should be the development of discussion groups where HIV positive and HIV negative gay men can begin dialoguing.
2) Steps should be taken to acknowledge the phenomenon of ‘bare back’ sex in the community. Initiatives should be developed to raise awareness amongst gay men of the risks of bare back sex. Confusion surrounding the role of drug treatments for HIV (as a ‘cure’) should be clarified.
3) ACT should further explore the possibility of offering support groups and health promotion workshops during day time hours.
4) ACT should undertake the development of programmes and services that would assist people with HIV who are contemplating a return to the work force.
Appendix: Focus Group Outline
- who we are
-why we are doing these groups
-payment at end
2) ICE BREAKER:
Give your name (or a name) and your age and answer: why did you come to this focus group?
3) WHAT DOES SAFER SEX MEAN TO YOU?
What does safer sex mean to you (Probe for: disclosure issues [Do you feel that you have to tell sexual partners that you are HIV+? How does this make you feel? Have you ever been rejected after you have disclosed?])
Do you feel that the pressure is on you, as a person with HIV, to bring up condom use?
Is disclosure different for you, depending where you meet your sexual partners (i.e. bars, vs baths vs parks?)
Are there situations where you feel you don't have to disclose your status? What is different about these situations? (Probe for: is it just a one night stand, or is he "relationship material"?)
4) ALCOHOL & DRUG USE:
Do your safer sex practices change if you have been taking drugs or alcohol? How?
How have you dealt with these changes? (Probe for: elimination/moderation of drug/alcohol use?)
5) RELATIONSHIPS BETWEEN HIV+ AND HIV- MEN:
How do you see HIV negative gay men? (Probe for: how do you think about them? negatively, positively, do you envy them, do you think they are "whiners").
How do you feel about HIV- gay men getting services at ACT?
Do you feel there is a gap between HIV+ and HIV- gay men? If so, how could we close this gap?
6) RELATIONSHIPS BETWEEN OTHER POSITIVE MEN?
Have you heard of the term "bareback" sex? (Probe for: what does it mean to you)
How do you feel about bareback sex? (Probe for: is it OK, bad, OK in certain circumstances)
7) SERVICES AT ACT:
What more could ACT be doing to support HIV + gay men (drop ins, support groups, discussion groups re: sex for positive men?)
text: John Maxwell
e-mail Gay Men’s Community Development Coordinator