WORLD peer program helps women live well with HIV/AIDS
Women Organized to Respond to Life-Threatening Diseases (WORLD, http://www.womenhiv.org) began in 1991 as an informal community of HIV-positive women who met to support each other, and other women diagnosed with HIV, at a time when few services targeted women. From this grassroots beginning, WORLD’s peer support process became formalized in 1997 when Ryan White funds made the first paid peer advocate position possible. Today the peer advocacy program at WORLD consists of five peer advocates, including one bilingual peer serving the Latina community and one peer coordinator.
Building a relationship of trust
WORLD peer advocates focus on building a relationship of trust by providing emotional and practical support in a way others often cannot. Peer advocates provide a range of services, such as helping a client adjust to living with HIV, addressing issues of disclosure to loved ones and partners, explaining how HIV medications can improve her health, brainstorming self-care and medication-adherence strategies, accompanying her to health care or social service appointments, helping her talk openly with her doctor, or helping her identify and connect to needed social support services. Additionally, peers recruit clients to attend weekly peer-facilitated support groups and biannual retreats sponsored by WORLD.
Peer advocates meet with clients in a variety of settings—in clinics, at doctors’ appointments, at home, in the park, at a café—wherever the client feels most comfortable. They carry a caseload of about 30 women each. Some women, who have been in the program for several months, might require contact every few months, while others might require contact on a weekly basis.
It is this ongoing, supportive relationship that helps a client move forward to make changes in her life and adhere to care and treatment, according to Janie Riley, who heads the WORLD peer program. “Many of the barriers to treatment—domestic violence, a history of trauma or sexual abuse—directly relate to emotional needs, so the way you can reach someone is to provide emotional support,” explains Riley.
A collaborative network of HIV care
WORLD is affiliated with the Family Care Network (FCN), a comprehensive network of HIV care services, and peer advocates work in FCN medical, mental health, or substance abuse treatment clinics and service agencies throughout the greater San Francisco area. Assignments are scheduled to ensure that each clinic or agency has access to peer support at least once a week.
The collaborative network of agencies in which the peer advocates work makes the program very interactive. Peers have strong working relationships with doctors, social workers, case managers, nurse practitioners, and clinic staff, often participating in consultations with clients or in case management meetings.
Supervision and training
WORLD’s peer advocates receive on-the-job training in basic counseling and other skills, depending on each peer’s level of experience. According to Riley, training and supervision are closely linked; WORLD uses a mental health model approach to training in which Riley leads a weekly group meeting which begins with stress reduction techniques, then engages the group in troubleshooting any issues a peer might be having with a client. Sometimes the meeting includes a training component on issues which peers have expressed an interest in, such as domestic violence or HIV disclosure. Peers participate in outside training as well.
Additionally, Riley meets with each peer advocate individually once a week. “The way I supervise them is the way they will eventually internalize how they support their clients,” explains Riley. “These individual meetings give me an opportunity to listen to what they say about their clients and find those teaching moments to help them think through what they are trying to accomplish. My challenge is to find a balance between being firm about making sure a peer is consistent in her work habits but being flexible about needs for time off for family issues or self-care, because the peer role is often stressful.”
Experienced peer advocates have the opportunity to share their knowledge and hone their skills by serving as peer trainers in the Lotus Project, a collaboration between WORLD and the Center for Health Training (CHT) which has been providing peer advocacy education trainings around the country since 2005.
Building the confidence to take on challenges
In addition to serving as peer trainers, peer advocates may participate in WORLD’s speaker’s bureau, where they learn to present at conferences, health fairs, churches, businesses and media events about HIV-related topics such as anti-stigma and prevention. As WORLD’s peer advocates improve their skills, they gain the confidence take on new challenges. One WORLD peer recently moved into a new role as peer advocate coordinator, helping with the daily operations of the program. Another coordinates the women’s support group. A third left the program to attend Spelman College, where she is focusing on women’s studies and international health.
Most of WORLD’s peers started out as clients, and Riley is gratified to see how WORLD empowers them to develop in so many ways. “I feel like I’m successful if my team is working together and supporting each other and the clients,” says Riley. “I see that happening on a daily basis.”
