Horizons | Research Summary | Positive, Engaged, Involved: PLHA Participation in Community-based Organizations

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RESEARCH SUMMARY

August 1999

Positive, Engaged, Involved:
PLHA Participation in Community-based Organizations

Introduction

At the 1999 International Conference for People Living with HIV/AIDS (PLHA) in Warsaw, Dr. Peter Piot, executive director of UNAIDS, made an impassioned plenary speech about the importance of PLHA participation in HIV/AIDS programs. “People with HIV must play an integral role in HIV prevention and care programs in order for them to be truly effective,” he said.

Dr. Piot’s remarks reflect a growing consensus on the role that people living with HIV/AIDS can play in the design and implementation of HIV/AIDS prevention and care programs. Experience around the world suggests that PLHA involvement and input can improve service delivery, empower them by ending their isolation, curb the effects of stigmatization and discrimination, and add a powerful voice to prevention activities.

“When infected individuals have names and faces, it is easier to understand that people with HIV are our sisters and brothers, our children and parents, and AIDS becomes an issue we all must address,” Dr. Piot told the gathering.

A member of La Bergerie with a client at the “Compassion” outpatient care center in Ouagadougou.

For the past several years, involvement of people living with HIV/AIDS in prevention and care activities has grown around the world, yet few formal studies about the most effective forms of participation by HIV-positive people have been carried out. Many questions have gone unanswered. What kinds of PLHA involvement exist? Which have the greatest impact on the quality and effectiveness of community-level programs? How can PLHA involvement improve their health and quality of life? Conversely, are there circumstances in which participation by HIV-positive people has little or a negative impact?

Researchers from the Horizons Project, a Population Council-managed operations research effort dedicated to studying effective practices in HIV/AIDS prevention and care, designed a diagnostic study to investigate these issues. Working with the International HIV/AIDS Alliance, one of five project partners, Horizons is looking at PLHA involvement in community-based organizations (CBOs) in several countries around the world. The first country study, in Burkina Faso (October 1998 to April 1999), was a pilot study that gave the Horizons researchers an opportunity to formulate appropriate questions and test the effectiveness of the overall study design. The remaining country studies—in Ecuador, Zambia, and India—will build on that knowledge, yet also incorporate new topics and concerns sensitive to each setting. Each of the country studies is designed to examine existing community-based HIV/AIDS organizations and study the different ways in which HIV-positive people do or do not participate in them. The goal: Develop an understanding of effective practices in PLHA involvement in prevention and care programming, and disseminate the lessons learned.

The country studies will immediately benefit the organizations involved by offering them a chance to examine their own policies, organizational makeup, and programming regarding people living with HIV/AIDS. Do these community-based organizations (CBOs)—whatever their level of PLHA participation—offer the best possible service delivery? Do they understand the potential contribution that HIV-positive people can make to the effectiveness of their prevention and care activities? Are they contributing positively to the health and quality of life for people living with HIV/AIDS? How can they expand recruitment of new HIV-positive members, or take better advantage of the skills and experience of those who already belong? Findings from the studies will give each CBO unique insight into its own operations and help it develop better outreach to HIV-positive people as it improves prevention and care programming.

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