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

Benefits of Research

CBOs included in the Horizons study in Burkina Faso were far from passive research subjects. They were involved in many aspects of study planning and design, and had opportunities at every stage of the project to provide input on the process and recommend new approaches. This participation was actively encouraged and incorporated into the research structure by the Horizons researchers, who foresaw both improved study instruments and opportunities to rapidly put findings to work.

Necessary conditions for safe and effective PLHA involvement in CBOs

At a data analysis and interpretation workshop at the close of the study in Burkina Faso, CBO representatives agreed that the following conditions are necessary for successful participation of HIV-positive people.

At an individual level:
CBOs should recognize that the initiative to become involved must come from HIV-positive people themselves.

At an organizational level:
CBOs should encourage better integration of HIV-positive people within the organization through sensitivity training for non-infected CBO members.

CBOs should inform HIV-positive people who receive services about opportunities for involvement in CBO activities.

CBOs should encourage HIV-positive people to undertake activities that utilize their skills.

CBOs should provide appropriate training to this population.

CBO by-laws must exist to protect HIV-positive people who decide to become involved, particularly when this involvement is visible and might have negative consequences.

When the research was completed, data analysis and interpretation workshops presented study findings that prompted the five CBOs to make immediate changes in their organizational structure and functioning in order to implement recommendations. Organizational profiles for each CBO, an important product of the study, were especially helpful tools to pinpoint weaknesses and identify solutions. Who makes decisions, how information is exchanged, how care is provided, how broadly training is offered among the membership, whether women are considered in programming strategies—these were just some of the questions the CBOs felt empowered to tackle, because they had been involved from the start as study partners.

“The study was different from others of this kind because . . . we were actively involved in the process and were able to validate the results all along,” said Issoufou Tiendrebeogo, president of Association African Solidarité. “All of the CBOs who participated in the study wanted to improve their services and the study has enabled them to do exactly that.”

For example, ALAVI—which once had a very centralized decision-making process—is now a model for power sharing. Monthly meetings empower members with information, new committees offer opportunities for higher levels of participation and leadership, and training is offered to all, not just a small leadership core.

The Horizons study has also had an impact at the national level. The findings are being used to develop a country-wide strategy on community-based care and support by the National AIDS Programme and UNAIDS, which invited the five CBOs that were studied to give their input at a July 1999 preparatory meeting. The data should also prove to have global value. In addition to informing the next phases of the Horizons study in other regions of the world, the study's findings in Burkina Faso are expected to contribute to other research efforts on PLHA mobilization, as well as to program planning and policymaking internationally.

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