Lesbians and HIV: Focus Group Summary

Lesbians and HIV: Focus Group Summary

by: Janet Rowe
Women's Outreach Coordinator

Background and Purpose

The current brochure was produced in June 1995, in time for Pride Day distribution, and had not yet been evaluated. A previously used brochure was out of circulation. Changes from the previous material were based on feedback received about that brochure. It was intended that through the groups and individual interviews we would be able to evaluate both the content and design of the 1995 brochure. Focus groups and individual interviews were held in June and July 1996 with a dual purpose: to assess the information needs of lesbians engaged in high risk activities, and to evaluate ACT's existing safer sex brochure for lesbians.

Research Objectives

The objectives of the focus groups and interviews were:

  • to obtain reactions to the " What Lesbians need to know about Safer Sex" brochure in terms of content, language, length, format and design.
  • to identify the information needs of Lesbians who have engaged in high risk activities.



A flyer advertising a discussion group for " lesbians who have had sex with men and/or have used needles for injecting drugs" was distributed through the ACT information boards and at The Works. An ad was also placed in Xtra! magazine. Potential participants were asked to contact Janet Rowe at the AIDS Committee of Toronto. Each participant was paid $20.00.

In total 20 women participated. Of these 20, one woman was Asian, and 19 were white. One woman was hearing-impaired. Six women identified as former injection drug users. One woman disclosed that she is HIV-positive. Eighteen identified as lesbian and two as bisexual. Most participants had had sex with men prior to coming out. Several lesbians have sex with men on an occasional basis. The age range of participants was between 20 and 45.

Eighteen of these 20 individuals participated in one of two focus groups, facilitated by a facilitator external to ACT. The groups were held on June 13 and 16, 1996. Individual interviews were conducted with the two participants who were unable to attend the focus groups.


After introductions, participants were informed about the goals of the focus groups, and guidelines for participation were agreed upon. Participants were then asked questions regarding safer drug use and safer sex practices with both men and women. A general discussion followed regarding the barriers to safer sex/safer drug use practices, as well as conditions which made safer sex/safer drug use practices possible.

Participants were then asked to read the " What Lesbians need to know about Safer Sex"
brochure. They were asked to comment on the length, content and design of the brochure.


Safer Sex:

When participants were asked what made safer sex practices difficult between women, the consensus was that there was a lack of knowledge about the risks, and a belief that lesbians cannot become infected with HIV. Many women said that talking about safer sex with women before having sex was difficult. Women felt that they might be stigmatized if they raised the issue of safer sex, and were unsure about how or when to bring the issue up.

"I don't know how to approach the issue. It interrupts the mood"

" It's difficult to talk about because women will think you are sick; it might give them the impression that you are dirty or that they are dirty"

" There is a big attack on dykes who fuck men; there is an attitude that only dykes who aren't "real" dykes have to practice safer sex"

Safer sex with men did not pose as many problems for women. Most said that they would use, or had used, condoms with men. However several women suggested that their age affected their ability to negotiate safer sex, i.e. the younger they were the more difficult it was.

“ Age makes you feel invincible. The younger you are the more invincible you feel”

As well, the stigma of being a lesbian who has sex with men made some women feel that they were doing something wrong anyway, so why bother practising safer sex?

Women felt more able to negotiate safer sex with both men and women when it was a person they knew and with whom some intimacy had been established. Greater self-esteem was also identified as a factor in feeling able to practice safer sex, as was knowledge about a person's past sexual history. As one woman stated:

" When I choose someone I know is promiscuous, that's why I have chosen them, that triggers me to use a condom."

One woman disclosed that she is HIV positive. She stated that " being HIV positive and being worried about infecting someone, I always practice safer sex."

Most women identified ACT and Hassle Free Clinic as resources in terms of information regarding safer sex, but found that the information available didn't cover a broad enough range of activities.

I didn’t find the pamphlets very helpful because I wanted to know the range of risk. How far could I go before it was too risky. Like when should I use two condoms. The information wasn't specific enough and I didn't want to talk to anybody”

Safer Drug Use:

The main obstacles for lesbians practising safer drug use were identified as access to clean needles, a lack of information about how to clean your works, and being too high to care. As one woman said:

" If it's 3 a.m. and you want hit and there are no clean needles, you don't care"

Several women did not know about needle exchange programs, and those who were able to buy needles felt humiliated by the experience.

Evaluation of the Current Brochure:

Women in both groups liked the range of information in our current brochure. The fact that the section on heterosexual sex was integrated into the text of the brochure, they felt, gave readers a clear message that lesbians do have sex with men. Most women thought the language in the brochure was appropriate. Some, however, felt that more "street language" should be used in the text.

Some participants said that the brochure should include a section on negotiating safer sex, and that the issue of self-esteem be addressed directly.

Many participants thought that the SM section needs to be expanded to include more specific information on a variety of activities. Many lesbians engage in SM sex but don't define themselves as being into SM. Expanding this section may help get the information out to those lesbians.

Several women felt that materials directed at lesbians tended to focus primarily on oral sex. They considered messages about oral sex to be confusing, not specifically in this brochure but in general. They indicated a need for clear, specific and up to date information about the level of risk involved in oral sex.

“The information seems to change. Before oral sex was not okay and now it is. I'm not sure what's right. We need a way to keep up. Information about lesbians and sex tends to focus on oral sex. Like that's all we do in bed"

It was generally agreed that the section on safer drug use needs to be expanded to include more specific information, with illustrations on how to clean your works and where to get clean needles. One woman felt that the section on drugs should include other harm-reduction information such as what drugs are high-risk for overdosing, and what drugs should not be mixed together.

When participants were asked about the design of the brochure, the general consensus was that the brochure should be small enough to fit in a back pocket. Most women felt that the brochure was bland, lacked colour and was in need of some graphics. Several women commented that the brochure looked as though it had been produced by the government.

Many commented that the brochure wasn't sexy. It was suggested that sexier language and images would encourage lesbians to practice safer sex. Comparisons were made to safer sex materials produced for gay men. To some it seemed that more money and effort are put into safer sex brochures for gay men than brochures targeting lesbians.

Several women commented that the title was "too bossy". They felt that they were being told what to do. Most women liked the inclusion of the word lesbian in the title, as this clearly indicated that the pamphlet was directed at them. Several women noted that while the word lesbian was used in the title, it does not appear in the text of the brochure.


Lesbians participate in a wide range of activities which put them at risk for HIV infection. Our intention, when producing the brochure, was to integrate these activities into the text. Specifically we included sections on sex with men and injection drug use. Both of these are highly stigmatized in the lesbian community and have not previously been addressed in materials produced by ACT.

The response from women in the focus groups clearly indicates a need for these issues to be addressed. Addressing sex with men and drug use directly provides lesbians with the information needed, in a context which does not question or deny their identity. Integrating this information into the text without explanation further de-stigmatizes the behaviours.

There continues to be confusion and misinformation regarding the risks associated with unprotected oral sex. It is essential that the brochure provide lesbians with clear information regarding the level of risk of these behaviours.

While the brochure does address SM sexual practices, it does so in a cursory way. This section needs to include more specific information about a broader range of activities.

Both focus groups discussed the lack of material about HIV available to lesbians. The information that does exist does not reflect their reality or is bland in its presentation and design. This lack of information can be interpreted as meaning that lesbians are not at risk and/or that their issues are of little importance.

The brochure will begin to address some of the gaps that exist in prevention materials for lesbians. However a coordinated campaign is needed to disseminate the information to a broad range of lesbians in the community. The campaign should include:
  • outreach to organizations who serve lesbians such as emergency shelters for homeless women and youth
  • drop ins
  • needle-exchange programs
  • a poster to promote the brochure and its key messages

e-mail Women's Community Development Co-ordinator