Affected Women Focus Group Internal Report


-with recommendations
by Maureen Carnegie and Bridget McFarthing
with assistance from the Women’s Health Promotion Team
Summer 1997

Background and Purpose
In accordance with the strategic plan and the report on Future Directions for Women and AIDS Program, ACT’s Women’s Team undertook a review of current services available to women at ACT. To plan for future service directions, it was determined that ACT needed to hear women’s opinions and needs before a relevant and comprehensive plan could be developed. While it was believed that we had a grasp of issues faced by HIV-positive women, there were gaps in our knowledge regarding the needs of HIV-negative, “affected” women. Therefore, the team decided to conduct a focus group with affected women to explore their needs and opinions about service directions. Based on the results of the focus group, our goal was to develop programs that would address the needs of affected women without duplicating the services of other women-serving ASOs. While we sought input on service directions generally, support group programming was specifically targeted.


Definition of “Affected”
The intent of the focus group was to hear the opinions and needs of affected women, initially defined as HIV-negative women. However, advertisement for the focus group garnered response from both HIV-negative and HIV-positive women. HIV-positive women expressed their experience of being infected, as well as affected, having been in relationships with and/or cared for others with HIV/AIDS, and/or being members of communities impacted by the epidemic. The definition of the target population of the focus group was thus modified to reflect this opportunity to hear from women with a range of experiences with HIV/AIDS. Therefore, for the purpose of this paper, we will refer to women who experience the impact of HIV/AIDS, regardless of serostatus, as affected.


Focus Group Objectives

There were two main objectives of the focus group and interviews:
  • to obtain information about the experiences of affected women in accessing existing services at ACT, and
  • to obtain information about what additional services affected women want from ACT



Method

Planning Procedure
Flyers and print notices were developed advertising the focus group (see Appendix...). The flyers were sent to approximately thirty agencies where it was believed they would be seen by affected women. Print notices were placed in Xtra! and Siren magazine.

Focus group questions were developed by ACT’s Women’s Outreach Coordinator and Support Group Coordinator.

Sample
There were 14 women in the sample: 10 participated in the group session, and 4 who were unable to attend the group, participated in individual interviews. Women were not asked directly to identify their serostatus, so accurate statistics on the number of HIV-negative and HIV- positive participants cannot be reported.

Procedure
The focus group was facilitated by ACT’s Women’s Outreach Coordinator and Support Group Coordinator. Three individual interviews were conducted by the Support Group Coordinator (one by phone, two at ACT’s offices), and one individual interview was conducted by both program Coordinators. After introductions, women were informed about the goals of the focus group and guidelines for participation were agreed upon. Participants were asked to respond to questions pre-determined by the facilitators (see appendix A).


Focus Group Results

While participants cited several examples of issues which can be classified as unique to women’s experiences, many of their needs and issues were not necessarily gender specific. The central issue which emerged is women’s knowledge of, and experience with, accessing ACT’s services. This finding has significant implications for how we deliver, promote, and advertise our services.

Any changes we make to our service delivery must be approached with full awareness of the issues and experiences of women, whether they are HIV-positive or HIV-negative. This indicates the need for broad educational initiatives across the agency for those who plan and deliver programs.

What Women Said About Accessing ACT Services

One of the most startling results of the focus group was that women, regardless of serostatus, were unaware of ACT’s services. Not only was there uncertainty about what we offer, but who we offer our services to. In women’s own words:

“I don’t know what services are available at ACT. I thought I had to be gay or bi to get services here.”

“I thought ACT was just a fund raising organization.”

“No one was around who could give us advice about hospitals or legal issues. I didn’t know I could go to ACT for this.”

“I always thought ACT was just for men.”

“I’m not aware of the services ACT offers, or that they are available to women or affected people”.

“I didn’t know as a woman I could go to ACT ”.

“I didn’t feel I could call ACT and ask if there was someone I could talk to. I didn’t know I could”.

“ACT was one of the last names that I was given when I was diagnosed.”

“I didn’t know women could just pick up the phone and ask for counselling”.


Women’s Experiences and Issues

Women in the focus group described many aspects of their experiences with HIV. What follows are some of the comments women made describing their experiences:

On relationships:
“I wasn’t planning for the future. It’s easy to get morbid thinking; like there’s no sense of getting into a relationship.”

“It has impacted my daughter’s life so dramatically. She’s distanced herself from me”.
“I don’t get invited to weddings, Christmas, family gatherings.”

“I stayed in an abusive relationship for 7 years because he’s positive and so am I ”.

On sex:
“It has affected my sex life tremendously. I haven’t had sex since I was diagnosed. Even though I know how to keep myself and partner safe, I would be devastated if I passed it (HIV) along”.

“The effects of the long term multiple losses on my ability to have sex with my partner now, just to live as a happy healthy person in the world, have been really big. We don’t talk about them”.

“I can’t have sex with my partner because every time she touches me I cry. I only have one person I can talk to”.


On grief and multiple loss:
“The impact of my HIV-positive brother’s death was that other suppressed issues started to emerge. It is important that those who work with women who are experiencing crisis (grief) are aware of this.”

“ I don’t talk much about the negative stuff: perpetual grief, loss of partner, impact on my ability to have sex with my partner”.

“99% of the past 5 years I’ve been in the grief process. It’s affected me in a big way, not letting people get close to me. I feel like I’m living in a fucking war zone. I’m constantly in it - I live in a building with lots of people who are HIV-positive. I want to withdraw from the world and that’s not like me. I’ve always been pretty positive in attitude but it’s pretty tough”.

“Grieving is a daily thing. When I see someone who looks or behaves like someone who has passed, or when I’m at a party and know someone is missing, I think, who am I going to know in the future?”

On the absence of control:
“There is such a sense of a loss of control in my life, everything is arbitrary now, so I worry about my control needs. I need to have that kind of control over my life, because people keep dying and getting sick. This should not be happening and I can’t make it stop, so everything else in my life I am going to have wrapped up in a nice neat package. I wonder how this is affecting me over a long term basis”.

“There is a loss of control in my life because people are dying. I’m trying to control everything else in my life”.


On being a lesbian:
“People say how can you be HIV-positive, you’re a lesbian?”.

“There is an invisibility in being a lesbian who is infected or affected. I often find myself in groups of gay men who are affected and infected, and I feel like my issues aren’t valid”.

“I did a bereavement group last year. I was the only HIV negative lesbian there, so I got small: my issues didn’t count”.

“As a women and a lesbian I feel left out of the gay culture, the bathhouse experience. But you are admitted into the support culture piece”.

“AIDS is a part of every lesbian’s world if they are a member of the community, no matter what”.


On being a woman:
“I’ve felt like the issues of HIV-positive people, and /or say men who’ve lost lovers and lots of friends, that their issues are more important than mine”

“A lot of services are male oriented”.

“As a friend, and if you are a woman friend, you are isolated. You’re sort of down on the totem pole”.

“Behind every great man that has died is a women providing support”.

Some additional comments:
“After I tested positive, I was sterilized because my doctor thought that it was best”.

“I have a lot of lesbian friends who still believe they are the untouchables. That was me too, and now a year later I am positive. I don’t know what’s happening, there has to be more education.”



Women’s Service Recommendations

We asked women to comment specifically on their ideas for support groups and other service initiatives:

Support Groups:
“I would love a group where I could go and ask questions and share my fears about having sex with somebody”.

“A bereavement group for infected and affected women”.

“A group for HIV + women and a group for HIV- women, as issues are different”.

“A group for HIV+ lesbians. Sometimes lesbians have different needs than hetero. women”.

“Maybe it (a support group) should be held someplace other than in an ASO, as the disclosure issue is greater for women because often children are involved” .


Other service initiatives:
“Even when I was first diagnosed, ACT was one of the last names that I was given. Women need to be made aware that ACT services exist for them.”

“Research consistent funding for women’s programs.”

“A campaign that says ACT is not just for men.”

“Promote that counseling services are available to (HIV-) affected women.”

“Make it more welcoming to women.”

“If you advertise your services in certain papers, I just haven’t seen it.”



Summary/Analysis

Generally, the issues identified by women in the focus group fell into two areas: services issues and staff education issues. Each issue identified has implications for how we deliver direct service, and educating our staff in terms of the issues that women are currently facing.

The service issues which emerged from the focus group include: accessing services, isolation, and the lack of services specific to infected and affected lesbians.

Accessing services: A majority of the women in the focus group stated that they were unaware of, or believed they were not entitled to, ACT services. Some women stated that they were not given ACT’s name upon an HIV-positive diagnosis, that they believed our services were for men only, or that they had no real sense of what kinds of services we provide. Obviously, being unaware of services and who they are for is a significant barrier to accessing services. As an agency, we need to analyze our methods and venues for reaching and informing women that ACT services are available to them, regardless of their serostatus. Additionally, we need to ensure that women’s initial contact with ACT is welcoming and affirming.

Isolation: Women frequently take responsibility for the care of others, often at the expense of their own physical and emotional health. They may not seek assistance until their own resources have been exhausted, which results in accessing service at crisis points.

This reluctance to access services until absolutely necessary is indicative of women’s isolation from supportive helping networks. It is important to discover ways in which we can support women before they reach crisis. Our challenge will be to provide services in a respectful, flexible and creative manner that complements women’s personal resources and strategies. Off-site visits and telephone support are two ways in which we may meet women’s service needs more effectively.

Lack of services specific to lesbians : Lesbians have been side by side with gay men in the struggle against HIV/ AIDS, yet there are very few services specifically geared toward a lesbian clientele. As one women noted, “AIDS is a part of every lesbian’s world if they are a member of the community, no matter what”.

The fallout from AIDS in the lesbian world is quite substantial. The effect on women to women relationships is direct, especially in relation to multiple loss issues, relationships and sex. This common experience needs to be validated, and a space created for lesbians to share their experiences and receive support. The development of services specific to affected lesbians is required.



SECTION 2
When a woman initiates contact with ACT, it requires that our staff be educated about issues relevant to women. Staff education issues in the context of service to women include: women’s experience of loss and grief (including multiple loss), personal control issues, and overall experience of the AIDS epidemic. Although not highlighted in the focus group, it is important that staff are aware of women’s unique health issues and experiences with the health care system.

Multiple loss: Acknowledging and validating women’s experience of multiple loss is crucial. Withdrawal, fear of the future, morbid thinking and a failure to thrive are common reactions of any group or individual experiencing multiple loss. Many women in the focus group clearly identified these responses in themselves.

Personal control issues: As is the case with anyone personally confronted with the AIDS epidemic, issues of control become highly salient for women. Whether it is in regard to health, the realities of disease and death, the re-negotiation and/or loss of relationships, accessing support, or any other issue, the need to have some sense of predictability and power wherever possible is essential.

Overall experience of the AIDS epidemic: Women in the focus group reported their perception that their needs came second to those of men, and if HIV-negative, second again to those who are HIV-positive. There was indication that within the gay community women’s role of caregiver was not valued as highly as men’s. One woman stated, “I’ve felt like the issues of HIV+ people, and /or say men who’ve lost lovers and lots of friends, that their issues are more important than mine.” As service providers, we need to be aware that women are unaccustomed to asserting their needs and seeking support. For many women, receiving support is a complete role reversal.







RECOMMENDATIONS

It should be noted that wherever services are mentioned, these recommendations pertain to both existing services (i.e. health promotion, counselling, etc.) and the development of services specific to women (i.e. information sessions for women, women’s events, etc.).

1. At the strategic planning level, reaffirm ACT’s commitment to service provision to women as a priority. Act on this commitment through specific and concrete initiatives (such as those outlined below).

2. Designate a portion of ACT’s yearly budget to the development, delivery, and advertisement of services to women.

3. Hire a ‘Women’s Services Coordinator' to coordinate and deliver services/programming to women such as monthly HIV-positive women's events, workshops, advocacy, and research writing directed at positive women. Currently there is no one designated to do this work.

4. Actively inform and encourage women to access ACT services. This can be accomplished through:
  • a women’s service brochure distributed at women serving agencies and ASO’s throughout greater Toronto.
  • a widely distributed women’s health promotion poster campaign to accompany the brochure that promotes our services.
  • advertising that provides a consistent presence in Siren, community papers across greater Toronto (the Beach Metro News, the Bloor West Villager, the Oakville Beaver, the Scarborough Mirror, the Etobicoke Guardian, the Town Crier, plus the community paper for North York), and Toronto’s NOW magazine.
  • ensuring that any advertisements produced by ACT specifically include women unless there is legitimate reason not to (i.e. advertisements specific to gay men’s events);
  • outreach initiatives in environments where women are known to access services;
  • the development of partnerships with a diversity of women-serving agencies.

5. Train volunteers and staff to actively welcome women into the agency. Volunteers and staff should take the initiative in describing our services as available to women, rather than waiting for women to ask if they are.

6. Consider offering an affected lesbian support group.

7. Minimize the use of jargon in descriptions of who we are and who we serve (for example, people with HIV/AIDS, rather than P.H.A. as most women do not identify with the term PHA). The use of descriptive ‘plain language’ will assist in decreasing language as a barrier to service accessibility.

8. Develop 'shared ownership’ of women’s programming/education/issues/etc across the agency. This can be achieved by management requiring all staff involved in the delivery of services, (with the exception of Gay Men’s Health Promotion), to set goals and procedures regarding service to women in their workplans (e.g. devoting a specific number of ‘Moves’ to women, consistently offering women Hotline callers the option to see a woman counsellor, etc.).

9. Specifically seek the input of women in all focus groups relating to the development of services and campaigns.

10. a) That the Women’s Team as a whole develop and deliver an in-service to all employees of ACT on women’s issues, and that after this in-service women’s issues do not become the purview of the Women’s Team solely. One function of the in-service will be to develop a list of considerations which all staff can refer to when creating programming and print materials to ensure that they are inclusive of, and relevant to, women.

b) It is essential that delivering services to women becomes a part of everyone’s workplans in the coming year.