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

Types of Involvement

A central component of the study was investigating the different types of involvement by people living with HIV/AIDS in all five CBOs, with the goal of learning which lead to better service provision and more effective participation by HIV-positive people. Key variables that determine the different types and levels of involvement include:

Whether HIV-positive people are among the membership, and, if so, how many there are and how long they’ve been involved.
Whether members who are HIV-positive are only beneficiaries of CBO services or whether they also act as service providers.
Whether these members are visible as HIV-positive both within and outside the organization.
Whether people living with HIV/AIDS hold decision-making positions within the organization.

Among the CBOs studied three major organizational types were identified, each with a different level of PLHA involvement.

The charitable or compassionate model, which does not cultivate active PLHA participation. Members are predominately health workers offering medicalized care for people living with HIV/AIDS, whose role is more or less that of passive recipients of services. No people living with HIV/AIDS are known to be among the founders of the organization. Among the five CBOs, AMMIE represents this model.
The assisted self-help model is often a health or development organization that has taken on HIV/AIDS care and support activities. While people living with HIV/AIDS may be members and act as service providers, they are not usually among the founders of the organization and rarely function in decision-making roles. Such organizations may operate self-help groups, but not as a result of initiative by HIV-positive people. PLHA input into planning and design may be minimal, so the real needs of HIV-positive people may not be so quickly identified. The group may or may not be visible within the community as a CBO involved in HIV/AIDS work. La Bergerie has evolved into this type of organization.

The self-help model is founded by people living with HIV/AIDS and their supporters and many of them are involved throughout all levels of the organization, including the leadership. Its mission is mutual self-help, and PLHA members take responsibility for controlling the CBO’s strategies. Many members, including persons living with HIV/AIDS, are health and social sector workers, so PLHA may act simultaneously as service beneficiaries and providers. The self-help CBO is often quite visible within the community as an HIV/AIDS organization. Examples of this type include REVS+ and ALAVI.

The Self-Help Model

Of the two models that include PLHA membership—self-help and assisted self-help—the Horizons researchers found that each has advantages and disadvantages. The self-help model, with HIV-positive people playing decision-making roles and involved in program design, is more likely to take into account the real needs of this population, while the assisted self-help model, where HIV-positive people are not generally decision makers, may be less responsive and slower in promoting wider involvement of people living with HIV/AIDS. On the other hand, people living with HIV/AIDS in self-help organizations must be prepared to accept some degree of visibility outside the organization, not generally a necessity for those involved in assisted self-help. “In order to be able to speak out publicly as a person living with HIV/AIDS, you have to be prepared to face up to rejection, you have to be financially independent, and your family must be prepared to put up with the criticisms that will be made against you,” said a leader of one of the CBOs. The researchers found that the visibility issue can be a significant one for people living with HIV/AIDS, especially in places where response to the epidemic is limited and the level of stigma and discrimination is high. In certain circumstances, invisibility is thus desirable and can even be a strategy to protect individuals from possible discrimination, at least until specific support is in place.

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