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Starting a Support Group

November 2012

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Table of Contents


Introduction

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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.


What Is a Support Group?

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.


Setting Up a Support Group

Partnering

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.

Purpose and Participants

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?

Facilitator

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.

Structure of Meetings

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.

Location and Organization

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?
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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
 
See Also
Ten Things You Can Do to Enhance Your Emotional Well-Being
More on Support Groups for Coping With HIV
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Reader Comments:

Comment by: Tsholofelo S. (Brooklyn,NY) Mon., Aug. 8, 2011 at 6:09 pm EDT
that would be a wonderful thing to have
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