People living with HIV play a vital role in peer education and treatment in eastern Africa

People living with HIV have long been targeted for medical care, but they have not always been viewed as actors in the process. A new study co-authored by UCSF Bixby researchers through Sustainable East Africa Research in Community Health (SEARCH) shows that people living with HIV in Kenya and Uganda are vital in helping to guide community members toward HIV treatment.

Researchers learned that that people living with HIV are spontaneously taking roles as educators and counselors, sharing their personal stories to encourage others to seek HIV testing and treatment. Taking on this role wasn’t linked with any specific stigma reduction programs or membership in activist organizations. Some people took on this role as lay health workers or peer educators – paid or unpaid – while others did informal outreach to family, friends, neighbors and other community members. People trained as counsellors voluntarily shared their own experiences with treatment because it helped assuage patients’ fears and encouraged them to start treatment. As one peer counselor said, “I tell someone that I am in 20 years with the virus, and if I show him that I have no problem, then the person also feels strengthened.”

Researchers also found that the conversation around HIV shifted after patients began antiretroviral therapy (ART). Experiencing the beneficial effects of ART emboldened people to talk about their status and encourage others to undergo the same health transformation. One man recounted seeing another take out his ART pills in front of others, stating, “these days you just take your drugs in the open. . .there is no point of fearing.”

Previous research has not examined what drives people living with HIV to share their experiences with others. This study proposes that embracing and sharing the positive change in their lives allows people to overcome stigma and reclaim full personhood in their communities. Peer educators seemed motivated by the respect they gained for playing this role in clinics, and even those who had only administrative or clerical duties took a counselling role by sharing their personal experiences with patients.

Putting people living with HIV at the forefront of efforts to achieve universal testing and treatment offers tremendous opportunities to help meet these goals.