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

Key Findings of the Horizons Study

Motivations for involvement

Where access to care and treatment is limited, most people living with HIV/AIDS participate in CBO activities to gain better care and free or subsidized medications.

Obstacles to involvement

Most HIV-positive people do not even know they are infected.
People living with HIV/AIDS fear stigmatization and discrimination if they associate themselves with an HIV/AIDS-related CBO.
Many CBOs and NGOs do not do a sufficient job of publicizing their services and volunteer opportunities for HIV-positive people.
There are few formal referral systems to link up HIV-positive people and HIV/AIDS-related CBOs.
Voluntary work can be exhausting for HIV-positive people.
Many CBOs lack training opportunities for HIV-positive people.

Types of involvement

The self-help model: People living with HIV/AIDS join with others who are not HIV-positive to form an organization with mutual support as a main objective. HIV-positive people are both service beneficiaries and providers and play decision-making roles. This model is likely to better acknowledge the real needs of this population.
The assisted self-help model: HIV-positive people did not necessarily take the initiative in either founding or directing the organization. Mutual support is a service provided or facilitated by the organization through support groups or other mechanisms. While some HIV-positive people are CBO members and are involved in service delivery, few act as decision makers, which can affect the response to the real needs of this population.

Impact of involvement

On personal well-being: Most HIV-positive people experience an end to their isolation and a sense of empowerment when they become involved with CBOs.
On service delivery: CBOs with participation by people living with HIV/AIDS are better able to identify the needs of this population.
On prevention and consciousness-raising: Although there is little visible PLHA involvement in CBO prevention activities anywhere in Burkina Faso, the few examples show a radical change in the public perception of HIV-positive people.
On HIV-negative CBO members: Members who associate with HIV-positive people as comrades in a common cause rather than simply service recipients may gain a broader understanding of the needs of persons living with HIV/AIDS.

Meeting the needs of women living with HIV/AIDS

Women living with HIV/AIDS need better information on sexuality and pregnancy
Health workers, CBO staff, and others who work in care, support, and prevention are badly informed on issues relating to HIV infection of women. Extensive training is required throughout the country to improve the situation..