By Robin Hindery
Tuesday, August 24, 2004
From Internet chat rooms to small-town community centers, HIV/AIDS support groups for women are challenging the notion of what it means to be infected with the virus and are working to combat the often painful isolation of victims.
(WOMENSENEWS)--Ten years ago, if Dr. Gina Wingood had advised using Maya Angelou poems and discussions about hair salon etiquette to help women cope with HIV, she might have received a lot of strange looks.
Angelou, the African American poet, perhaps best known for her autobiographical account of her childhood rape, "I Know Why a Caged Bird Sings," has written throughout her 34-year career words that touch the core of those who live with gender bias, racial bigotry and betrayal of loved ones. One example: "You may shoot me with your words. You may cut me with your eyes. You may kill me with your hatefulness. But still, like air, I'll rise."
Wingood is using Angelou's work as part of her innovative techniques that focus on the central importance of social support and are gaining ground as the faces of the AIDS epidemic increasingly belong to women.
The techniques are based on common sense: Support networks can ease human suffering. But they are also surprisingly revolutionary in a country where infections rates are rising among women, who often receive the latest drugs but don't know about or don't take advantage of other support resources. Above all, support-focused efforts are working to teach society's traditional caregivers to care for and accept care themselves.
A July 2004 report by the Joint United Nations Programme on HIV/AIDS reported that women now account for half the people living with AIDS worldwide. Women in the United States represented 25 percent of the country's HIV cases in 2003, up from 20 percent in 2001, the United Nations Development Fund for Women reported in July.
HIV disproportionately affects African American and Hispanic women, who represent less than 25 percent of American women but account for 82 percent of the nation's AIDS cases among women, according to the development fund's report.
Studies have found a strong correlation among U.S. women with HIV/AIDS and a history of abuse, poverty, mental illness and other hardships. In addition, women often shoulder the added responsibility of caring for children and other family members (some of whom may also be HIV-infected), a task that is hugely demanding and often limits their ability to form personal social support networks.
With all those statistics in mind, Wingood has, since the late 1990s, been testing new ways of countering HIV/AIDS in women.
In a study of 366 HIV-positive, heterosexual women from rural Alabama and Atlanta, she set up a women-focused program that attempted to tap into the power of social support to help women overcome mental and physical hardships. One session, for example, focused on the definition of an unhealthy relationship, including emotional, sexual and physical abuse. The women discussed how to identify, and get out of, an abusive relationship--a problem many of the women in the study had experienced, Wingood said.
Called WILLOW (Women Involved in Life Learning from Other Women), the study was conducted by a group of researchers from the Atlanta-based Emory Center for AIDS Research, and is scheduled for publication in October. Wingood, the co-director of the center's Behavioral and Social Sciences Core, was the principal researcher.
WILLOW's premise is that historically women have learned about life and how to cope with life's challenges by forming relationships with other women, Wingood said. The researchers wanted to see if a program for HIV-infected women aimed at reducing risky sexual behavior and teaching coping mechanisms would improve their quality of life, increase safer sex and reduce sexually transmitted diseases over a 12-month follow-up period.
For a month in 2001,WILLOW participants from ages 18 to 50 met for weekly, four-hour group sessions in which they discussed issues such as self-esteem, communication skills and the importance of female social networks. In one exercise, the women acted out various scenarios involving a rude hair stylist and later took what they learned and applied it to a scenario in which their partner refused to wear a condom.
"In the first session, we read poems by Maya Angelou and talked about what we loved about being women," Wingood said. That session focused on "fostering self-pride, enhancing self-esteem and self-worth, and Angelou's poetry echoes those sentiments," she said.
Wingood calls the soon-to-be-published results "extremely significant and promising." They have already been presented to small groups within the AIDS research community as an example of how to increase safe-sex behavior and further the development of social support networks among women with HIV.
Julia Andino began to recognize the need for a new vision for dealing with HIV-infected women about 15 years ago when she worked with orphans of the AIDS epidemic in Brooklyn, N.Y.
"So many women were dying," said Andino, now the assistant director of the Women and Family Services department at Gay Men's Health Crisis, a Manhattan-based nonprofit that offers counseling, health education and legal services to the general public, regardless of HIV status. "There was and still is a real need to look at women as a whole and also within the socioeconomic reality in which they are living."
Since Women and Family Services came into existence five years ago, it has helped about 1,000 women each year through a variety of activities, workshops and forums, Andino said. The programs, which largely focused on women with past or current substance abuse problems, include the Lesbian AIDS Project for high-risk or infected women who have sex with women and the Child Life Program for children and parents who are infected with and affected by HIV/AIDS.
One of the most inspiring groups to join the WFS fold is the Power Group, Andino said. Made up of about 14 heterosexual, HIV-positive women, the group meets every two weeks at the Gay Men's Health Crisis headquarters and talks about everything from work to parenting to side effects of various HIV medications. They even take trips together.
"Those women often tell me the support group has saved their lives," Andino said. "What sustains them is that safe space the group provides."
In-person counseling and support is not for everyone. At least at first, many men and women seek the group support and anonymity of Internet forums and chat rooms.
That's where Bonnie Goldman comes in. As editorial director of an interactive, informational AIDS Web site based in New York City, TheBody.com, Goldman is constantly responding to the changing face of the AIDS epidemic and the changing demands of the Web site's users.
The Women and HIV section of the site is heavily trafficked, she said, perhaps in part because it recognizes that women with HIV often desperately crave confidentiality. Expert forums, where users can seek feedback from a panel of doctors, deal with questions ranging from the life expectancy of infants with HIV, to how to stop persistent weight loss, to the risk of getting HIV from trying on clothes without underwear.
"These women are dealing with multiple issues," Goldman said. "They may lead very isolated lives and their kids and their best friend may not even know they are ill."
Researchers and advocates are bolstered by the success of programs and studies centered on women here in the United States, and many are already thinking ahead toward how such strategies can be implemented in the developing world, where the AIDS epidemic is even more of a threat.
Wingood and her colleagues, motivated by WILLOW's successes, have already run a similar trial study among the Xhosa women in rural Capetown, South Africa. The Africa study results were similarly promising, she said, with near total participant retention over a three-month follow-up period.
No matter where the efforts are taking place, the important thing is not to lose sight of women's unique needs and social circumstances, Andino said.
"The question we keep asking ourselves is this: How do you reframe the often bleak reality of these women's lives so it's positive and life-affirming?"
Robin Hindery is a recent graduate of the Columbia Graduate School of Journalism, and a writer for Women's eNews in New York City.
Gay Men's Health Crisis--
The Women and Family Services Department:
The Emory Center for AIDS Research:
Note: Women's eNews is not responsible for the content of external Internet sites and the contents of Web pages we link to may change without notice.
By Christen A. Smith and Alysia Mann Carey
By Joanna Englehardt and Jennifer Keys Adair
By Tatyana Bellamy-Walker
By Chandani Jayatilleke
By Zoe Alsop
By Louisa Reynolds
By Alana Chloe Esposito