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

Overcoming Obstacles to PLHA Involvement

PLHA mobilization is a relatively recent phenomenon in Burkina Faso, dating from about 1996, despite the long presence of the epidemic within the country. Compared to other parts of Africa, involvement by HIV-positive people in prevention, care, and support activity by community-based organizations is thus still in its early stages and rather limited. The Horizons study sought to understand why this is so.

The researchers found that perhaps the most fundamental reason why people living with HIV/AIDS in Burkina Faso aren’t more involved in community mobilization activities is that most don’t even know they are HIV-positive. Extremely limited access to testing is the primary reason for this, but even when testing is done, many health professionals will not disclose results because they either lack the training to offer necessary counseling, cannot provide adequate follow-up and referral services, or have little time to give proper care.

Yet many people living with HIV/AIDS who do know their serostatus avoid participation in community-level prevention and care activities. When asked why, most study informants explained that HIV-positive people fear the stigma of being identified as such and the potential for discrimination. “If people say you are involved in an association of infected people, you know that you are labeled,” a member of one CBO told the researchers.

But the study also shows that concerns about stigma and discrimination may be exaggerated. The researchers found that involvement in CBOs that carry out HIV/AIDS prevention, care, and support activities does not lead to systematic stigmatization of or discrimination against either persons living with HIV/AIDS or HIV-negative members. While some informants reported difficult experiences such as verbal abuse at work or in the street, the fears of many were generally much worse than the reality.

To help people living with HIV/AIDS overcome this largely unfounded fear inhibiting their involvement in CBO activities, members of the five groups identified several strategies, including:

Providing psychological support and educating HIV-positive people about how to respond if confronted by stigmatization and discrimination.
Raising awareness among testing and care workers and training them so they can educate HIV-positive people in how to deal with these issues, thereby helping them to participate in CBO activities.
Guaranteeing confidentiality to HIV-positive volunteers, so that each can decide whether to be open about serostatus.
Creating support groups solely for people living with HIV/AIDS to bolster their confidence and protect confidentiality within CBOs.
Sensitizing HIV-negative CBO members about their own attitudes toward people living with HIV/AIDS.

Another barrier to PLHA involvement is insufficient publicity by CBOs about their services and volunteer opportunities, a problem exacerbated by the lack of a referral system that would enable clinics and other facilities to inform HIV-positive people about what’s available. Also, CBO involvement usually implies voluntary activity: people living with HIV/AIDS, particularly those who are ill or poor, often lack the time and energy for such involvement.

On the other hand, certain motivations do encourage people living with HIV/AIDS to participate in CBO prevention, care, and support activities. Chief among them is the belief that such involvement may lead to better care for oneself and access to free or subsidized medication, according to a significant majority of PLHA study participants. Indeed, in four of the five CBOs studied, some PLHA members are receiving treatment that might not otherwise have been available to them. While some study informants support promoting such access as an effective way to attract new PLHA members, others are reluctant to transform their organizations into what they characterize as community care centers and “pharmacies” for people living with HIV/AIDS.

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