Living with HIV can be very difficult. One way of coping is to seek others who are sharing similar experiences. A support group is one place to do this. However, in many communities, there are no groups available. If this is the case where you live, you may want to start one yourself.

Check in your area for an organization that provides services to HIV+ women. Find out if they already have a group. If not, then ask how they can help you start a group in your community. Partnering with an organization gives you contact with clients who may be future participants in the group you hope to start.

As you begin planning your group, consider the following:

What is the purpose of the group?

Possible purposes include providing social support, educational support, and/or therapeutic support.

Who can participate in the group?

Think about whether the group will be for women only or also open to their children and partners.

Decide who will facilitate (run) the group. It is tempting to say, “I wanted to start this group, so I should run it.” However, think about whether you are qualified to deal with the difficult and emotional issues that often come up when talking about HIV. These issues can be part of even the simplest discussions. Also, you may want to participate in the group and it is easier to do that if someone else is facilitating.

The feelings that people have kept pent up will come out. If you do not have the ability to help someone deal with these feelings, part of your planning should include finding a qualified person in the community that can assist with facilitating the group.

The structure of the meetings must be decided. For example, will the group be free flowing or have a set agenda? The women who will participate in the group should make this decision. Having them choose the way the meetings are carried out will give them some ownership of the group. The more ownership the women have, the more they will want to participate in the group.

As an example of this, At the Kitchen Table, a support group for HIV+ women in Dallas, Texas, meets twice monthly. At the beginning of each year, the participants come with their ideas. At this meeting, the social and educational ideas are discussed. The group decides which topics will be covered and which social events will be planned. Once these decisions are made, a calendar is created.

At each meeting calendars are given to the new group participants. This process has helped the core participants take ownership of the group. It also allows new participants to become familiar with the purpose, agenda, and structure of the group.

Other questions to consider include: 

• How often will the group meet?
• Where will the group meet?
• What time will the group meet?
• Will the group be closed or open to new members?
• Will the group run for a certain number of weeks or be ongoing?
• Will the group adopt rules and delegate responsibilities?
• Will there be a cost for participating in the activities?
• Will there be meals or snacks?
• Will incentives such as childcare, bus tokens, and/or grocery coupons be offered?

It is important to ensure that your support group provides a space that is safe, confidential, and welcoming. Try to create a non-judgmental atmosphere where participants, both old and new, feel comfortable sharing their feelings.

Sharing experiences allows members to give each other mutual support and to pool practical information and ways of coping. It also allows participants to understand themselves better through the insights of others.

When a group is new, the participation may be small. Don’t be discouraged. Keep meeting. The women in the community need to see that the group is going to continue.

If the group is open to new members, increase awareness by posting flyers at local organizations. Group name, meeting place, and meeting time are important facts to include. If a group is closed to keep it more confidential, then the name and number of the facilitator can be made available to local organizations for referrals. Talk to area case managers and attend Ryan White Planning Council meetings. Also keep in contact with the other organizations in your area that serve HIV+ women.

As the number of participants grows, ground rules will be necessary. The participants should create these rules. Ground rules are a way of establishing boundaries and keeping order in the group. If the rules are broken, there should be consequences that are consistently enforced. Such structure supports continuity and safety.

As the group grows, the different personalities of the participants and facilitator(s) may cause some division. As the group organizer, it will be important to deal with issues as they arise. Stick to the rules and consequences the group created.

There will be times when the group process will be difficult and you want to quit. At such times, remember that the women who are participating need the group. Work out the difficulties so the group can go on.

There is power in a group. Through this group, women will have the opportunity to learn about HIV, provide support for other women, develop leadership skills, set boundaries, gain respect, and experience dignity. More importantly than anything else, women will have the opportunity to learn their value as women. Through your group, women will learn that they are not alone: They have a family to support them as they live with HIV.