Women's Forum: Life With Hope: HIV-Positive Support Group Helps Others Avoid Infection

A woman living with HIV/AIDS in Thailand and her HIV-positive friends overcome discrimination, doubt and despair to bring their powerful message of prevention and tolerance to students and disadvantaged women.

After her second suicide attempt, Junsuda Suwunjundee decided to live with HIV/AIDS and do all she could to stop its spread in Thailand. She became a member of Wednesday Friends Club (WFC), a support group for people living with HIV/AIDS, and worked as a volunteer in the club's outreach program for high school students in the northern part of the country.

Four years later, Suwunjundee -- better known as "Oom" -- is still an HIV/AIDS outreach educator. As a member of the Life With Hope Group, which she founded with other HIV-positive individuals, she is sharing her experiences with others to help reduce HIV/AIDS transmission.

"I wish not to see more groups of PWAs [people living with HIV/AIDS]," Oom said, explaining her motivation to continue this difficult and often frustrating work while fighting a life-threatening disease.

Beginnings

Oom and her friends left the WFC outreach project, which was part of an HIV/AIDS prevention project of the Thai Red Cross Society (TRCS), in 1993. They felt that many of the TRCS staff saw them as patients who were not healthy enough to do all the work that their co-workers were doing, and they wanted to prove otherwise.

The tension between TRCS and Oom's group is not unusual. In Thailand such conflicts sometimes occur because people expect those living with HIV/AIDS to be sick and weak.

After leaving WFC, Oom and her friends received funding from the Ministry of Public Health to run a telephone counseling service for a few months. Then a private company invited the group to conduct peer education activities for its staff. It was their first opportunity to work with another target group besides students, and they found that the adults tended to be less open to prevention education than the youth they had worked with and more likely to hide or rationalize their risk behavior.

Early in 1995, Oom met Khunying Kanitha Wichiancharoen, chairperson of the Association for the Promotion of the Status of Women (APSW). The APSW was working on a proposal to the AIDS Control and Prevention (AIDSCAP) Project seeking support for an HIV/AIDS education program for women in an emergency home in Bangkok's Dusit District. The home provides shelter and assistance for women who find themselves temporarily homeless and have nowhere else to turn.

Impressed with the work of Oom and her friends, Khunying Kanitha proposed using the AIDSCAP funds to support their outreach activities. Oom and her group, named "Life With Hope" to emphasize that members of the group live with the same hopes and dreams as others who are not HIV-positive, seized the opportunity.

Community Outreach

Working with APSW, Life With Hope Group members decided to reach women living with HIV/AIDS, other community members, and students. They planned a project including outreach education and group support for women in two districts of Bangkok. The support group activities would take place at a clinic in APSW's emergency home.

With a one-year grant from the AIDSCAP Women's Initiative and a core of five members, Life With Hope also conducted outreach education programs at more than 20 secondary schools. The group follows an educational model designed to bring students to awareness of HIV/AIDS, an understanding of how to protect themselves from HIV infection, and compassion for persons living with HIV/AIDS (PWAs).

At the beginning of each education session, an outreach worker encourages students to express their personal attitudes and thoughts about HIV/AIDS and the image of PWAs. Slide presentations, questionnaires and games are used to help students discover the facts about HIV/AIDS. Life With Hope staff challenge students to think about how they could become infected with HIV and to imagine how they would live their lives if they were HIV-positive.

The outreach workers do not reveal that they are HIV-positive until the final session. They withhold this information so that the students will feel free to express their true attitudes and impressions of PWAs during the earlier discussions, and to make the point that many people who are HIV-positive do not look or act ill.

At the final session the outreach workers talk about how they became infected and how it has affected their lives. This revelation always leads to further questions and discussions.

Community residents are another target group. Life With Hope staff begin by approaching the head of each community where they plan to conduct an outreach education program. They ask about the major problems in the community and link those issues to HIV/AIDS. For example, in communities where the use of illegal drugs is a concern, the outreach workers emphasize the connection between HIV infection and injecting drugs.

With support from APSW and AIDSCAP, the Life With Hope staff held support group discussions at the emergency home to give residents an opportunity to exchange information and discuss their experiences and emotions. Sometimes they brought together HIV-positive women in support groups, but often they did not make a distinction between those who were HIV-positive and HIV-negative. They also tried to do some counseling at the emergency home, but this activity was not as beneficial as it might have been because the Life With Hope group members did not have any formal training in counseling.

Facing Challenges

As an outreach educator, Oom found that the Thai social norm of condemning women who have premarital and extramarital sexual relations but accepting and even expecting such behavior from men made it more stressful for female PWAs than for male PWAs to reveal their HIV status and talk about their experiences. However, she believes that female PWAs are effective as outreach workers because people tend to find women more trustworthy than men.

Social and cultural norms also make it difficult to hold prevention education sessions at girls' schools. Many Thais believe that it is not appropriate for women and teenagers to talk about sex and fear that such talk will encourage sexual activity outside of marriage. In some schools the outreach workers have to avoid talking about sex at all.

Group members' experience with HIV/AIDS and dedication to their work are powerful tools for prevention education, but their limited education hinders their efforts to run an effective HIV/AIDS program. During the past year, AIDSCAP/Thailand consultant Sujitta Shanokprasith helped them learn how to use computers and other office equipment and gave them training to improve their communication skills. She believes that group members need additional training in budgeting, financial management, program management and communication to strengthen their program.

From her own experience, Oom finds that the greatest challenge for PWA outreach workers is overcoming depression and feelings of hopelessness because of their unstable physical health. She is not confident that the treatment she receives will help her recover. When one of the Life With Hope staff passed away, Oom and her friends found it difficult to continue their work.

When AIDSCAP's program in Thailand ended in September 1996, the need to raise new funding became another challenge for the Life With Hope Group. As the leader of Life With Hope, Oom is seeking support from the private sector and collaborating with the mass media to reach larger populations. A Canadian documentary film company, ADOBE, is producing a film about the Life With Hope Group as part of a series about young activists called "Rainmaker" that will be shown in many countries throughout the world.

When funding does become available, Oom hopes to recruit additional staff. But it is difficult to find HIV-positive people who will devote themselves to this sort of work and even more difficult to train them to communicate well. Oom is reluctant to recruit HIV-negative staff to share the burden because of the conflicts and misunderstandings she experienced while working with non-HIV-positive people as a member of WFC.

Nevertheless, Oom believes that a person's HIV status should not dictate where and with whom he or she works. "I would not like to see wordings for activities such as 'PWAs for PWAs,' " she said. It sounds like discrimination and reflects that PWAs can only work for PWAs. I would love to see PWAs accepted as normal persons who can do things with a capability based on their own education and experience."

-- Chutima Chomsookprakit

Chutima Chomsookprakit is an associate program officer in AIDSCAP's Asia Regional Office in Bangkok, Thailand.