Updated November 2012
Living with HIV can be very difficult. One thing that can be helpful is seeking the support of others living with HIV (HIV+) through support groups, peer counseling, or places like our A Girl Like Me blog, which is an online community of support.
A support group is any group of people whose purpose is to support one another dealing with an issue. A support group may be small (an informal gathering at someone's kitchen table) or large (a facilitated group at an AIDS organization or in a church meeting room). The participants can be from a specific part of the HIV community (e.g., HIV+ women, caregivers of those living with HIV, members of a faith community), or they can be open to anyone who wants to come talk about HIV.
Some support groups are informal and led by the members themselves, while others are more formal and led by a trained facilitator. Some are general and provide opportunities for people to talk about anything on their minds, while others have a topic upon which they focus, such as HIV medications or how to deal with substance abuse issues. Some are "open" (members can join at any time or "drop in" as needed), while others are "closed" (requiring some sort of joining process and a commitment to attend regularly).
Some groups get together just to share information and encouragement, while others grow into longer-term mutual support communities where members help each other with carpools, childcare, or caregiving when a member gets sick. Still others grow into educational programs with outside speakers coming in to teach on various issues.
There is no "right" or "wrong" way to organize a group, as long as it is safe, supportive, and respectful of all participants. People living with HIV who participate in support groups often take better care of themselves and are less likely to feel isolated or depressed. If there are no support groups available in your community, you may want to start one yourself.
If you partner with an organization in your area that provides services to HIV+ women, it may be wiling to tell its members about your group so that those who are interested can join. If you are not familiar with organizations in your area, you can search for them using one of these resources: AIDS Service Organization (ASO) finder or this E-Atlas (International). You can ask if organizations in your area already have a support group; if they do not, you can ask how they can help you start a group in your community.
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 mental health support.
- Who can participate in the group?
Next, decide who will facilitate (lead) the group. If you want to participate in the group, that is easier to do if someone else is leading. Often, feelings that people have kept pent up or hidden inside will come out in a safe, supportive environment. Therefore, it is important to find a qualified person in the community (e.g., a mental health professional or someone experienced in leading support groups) who can assist with facilitating the group.
Next, you can think about the structure of the meetings – will they be free flowing or have a set agenda? Ask the women who participate in the group to help make this decision. Having them choose the way the meetings are carried out can enhance their sense of ownership of the group. The more ownership women have, the more likely they are to participate in the group.
Programs like HIV University, SMART University, and At the Kitchen Table are great examples of successful support groups for HIV+ women. At the beginning session of each year, the participants come with their ideas for various topics they would like to learn more about. The group then decides together which topics will be covered and which social events will be planned. Once these decisions are made, a calendar is created, and various participants volunteer to help arrange the events on the calendar.
When new participants attend the group, they are provided with a calendar. This process has helped the core participants take ownership of the group and 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? You can meet in person, or use the Internet to connect via online chatrooms (often called ‘peer support’).
- What time will the group meet?
- Will the group be closed or open to new members? If closed, how often will it 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. It can help to explain what confidentiality means to all members so that all participants have the same understanding and expectations for privacy.
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, participation may be small. It is important not to be discouraged and to continue to meet as scheduled. The women in the community need to see that the group continues to meet. Besides, the ‘success’ of a group is not based on how many people attend, but by the relationships that develop and support that is provided.
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. You may also want to talk to area case managers, attend local meetings, and keep in contact with other organizations in your area that serve HIV+ women.
As the number of participants grows, it will be important to create some ground rules. It is often helpful if participants create these rules themselves. Ground rules are a way of establishing boundaries and keeping order in the group. If the rules are broken, it is important to remind the group of the rules that the group established, so as to provide a level of continuity and safety.
Some common ground rules include:
- Expectations around confidentiality: “what you say in the room, stays in the room;” anything said or noticed in the room will not be repeated or discussed at another time or place
- Openness and respect: group members are expected to listen to each other without interrupting, take turns speaking, and speak without judgment or giving advice; by the same token, choosing not to speak is also respected
- Language: Group members are expected to avoid language that would offend
- Promptness: Meetings will begin and end on time
As the group grows, the different personalities of the participants and facilitator(s) may cause some tension or division. As the group organizer, it will be important to deal with issues as they arise. Try to stick to the rules and consequences the group created.
There may be times when the group process becomes difficult and you want to quit. If that happens, try to reconnect with the reason you started the group and work out the difficulties so the group can continue. This may mean passing the organization or ‘ownership’ of the group to someone else. Since being part of a support group is intended to help you live more healthfully with HIV, it is fine to leave a group if it is no longer serving its purpose for you.
There is power in a group. Through support groups, women have the opportunity to learn about HIV, provide support for other women, develop leadership skills, set boundaries, gain respect, and grow their self-esteem and confidence. Through your group, women can learn that they are not alone – they have a family to support them as they live with HIV.