January 2004

For five years, Robin has been a volunteer facilitator for a support group of women living with HIV disease. The closed group has been in existence for 11 years, and Robin has had the pleasure of being the designated facilitator since 1998. Stemming from a career in medical social work, Robin has not only witnessed, but also personally experienced, the benefits of group work. Growing up in a family who lacked health insurance, Robin identifies with those who are discriminated against or have a significant disadvantage in life. She strongly believes that all people should have access to quality healthcare and support services regardless of their financial means. It is this belief which led Robin to seek out a community with whom she could share her way of thinking and volunteer her time. She found that community among HIV+ women. “People should not be treated any differently because they have a virus – it’s not right and it’s not fair.”

The hallmark of being a successful support group facilitator, Robin says, is not acting as a leader, but rather guiding the conversation and interactions to enable the group members to help each other. As a closed group, the consistency of members, and the associated rapport, trust and confidentiality, are the driving force of support for each individual member. As the group facilitator Robin is the contact person for new members to join but the women’s group is democratically managed by the members. The women are actually the “owners” of the group. If a woman is interested in joining the group Robin explains to her the closed group format and the minimum six week commitment. The group meets in six week cycles with six weeks on, one week off. Once the group is closed for the six weeks it does not open for new members until the next cycle. If the woman is willing to make the commitment and the existing members determine the size of the group can accommodate another member, the group invites the woman to join. “The group runs the group;” the members make all the decisions. This is an example of how the members’ recognize the value of the group and are a major part of the group functioning.

As the facilitator, one of Robin’s main responsibilities is to maintain group norms and rituals. Every meeting begins the same way: the conversation moves around the circle as each woman states if she would like to give an ‘update’ or if she needs ‘time.’ If a member just wants to give an ‘update,’ she later shares with the group what has gone on in the last week. When a member expresses her need for ‘time,’ she is communicating that she has some specific issue or concern that she’d like to share with the group. Those who need ‘time’ go first, and hopefully all get the chance to share their concerns and elicit support from fellow members before the end of the session. One of Robin’s frustrations, and a general challenge of facilitation, is that many days there simply are not enough minutes in the hour for every one to have a chance to speak.

There are no regulations enforced by Robin, or the group, as to which topics are appropriate to talk about and which are not. As a closed group, it is a little easier to establish trust and insure confidentiality, though neither issue should be taken lightly. Members feel free and open to discuss the most intimate and controversial aspects of their lives. As a result, there exists a rare form of unconditional acceptance between these women. That’s not to say there isn’t conflict or differences of opinion. Indeed there are, however these differences are respected and accepted.

In Robin’s experience she finds that women join the group because they want to share their experiences with others who are in a similar situation. Because all the women are HIV positive, there is no need to give background on what it’s like to be a woman with HIV disease – they all identify with the issue at hand. Though new members can sometimes feel like an outsider, they seem to view the long-time members as role models – self assertive women who are not hiding from their disease, but rather confronting it full force. Not all women who enter the group stay for years, but they do find a place where their experiences are normal, their feelings are validated, and they can share ways of coping with HIV. What is most significant in Robin’s eyes is that each woman receives validation that she is valuable and important regardless of her status.

Robin believes that women connect with other women in a very unique way, and feels it is important for social service agencies and communities to offer women-only support groups - the more homogeneous the group, the greater the members’ ability to bond with one another. She emphatically believes that support groups can help improve the quality of life of the women who participate, and doesn’t hesitate to talk about all the ways her group positively impacts her own life. Robin is honored to be let into each woman’s life; “I know their intimate details and I get to see the courage and strength they exude that no one else gets to see. I look forward to every Tuesday night – it’s part of my life.”

The women featured in our profiles are real HIV+ women and people working in the arena of HIV care. The Well Project respects and safeguards our profilee’s confidentiality – we will never reveal last names, addresses or places of employment. We may even provide an alias so that our profilee’s first names remain private. If you have any questions or comments about our profiles, please contact us.