Purpose of research:

Does involving HIV-positive people in the planning and delivery of non-governmental HIV services improve the quality of both the services provided and the lives of the HIV-positive people who offer their time, energy, and experience?

Research methods:

Investigators interviewed 800 HIV-positive people involved in HIV services in Burkina Faso, Zambia, Ecuador, and India. Seventeen service providers were also interviewed. Four types of involvement by HIV-positive people were examined: the use of services; working for the organisation in either a paid or voluntary capacity; particpation in the provision of services; and involvement in the management of the organisation and the design of services.

Effect on people with HIV:

All four types of involvement improved mental health. Accessing services that offered peer support was associated with a reduction in self-imposed isolation stigma. Participation and involvement in an HIV organisation increased access to HIV information, acceptance of HIV status, and self-esteem.

However, all types of involvement could result in increased stigma and discrimination if they entailed publicly identifying oneself as HIV-positive. The involvement of healthy people in the care of people with more advanced HIV disease was associated with depression and psychological distress unless accompanied by proper training.

Effect on service providers:

The participation and involvement of people with HIV in services was shown to increase the organisation's understanding and appreciation of the issues that impacted people with HIV. However, high levels of morbidity and mortality often disrupted services and led to increased costs.

Conclusions:

Benefits were greatest for HIV-positive people if their expectations of the benefits of involvement were realistic. Benefits were greatest for the organisation if people with HIV were included in the provision of services and in the management and planning of the organisation.

Reference:

Castle CJ et al. Meaningful Involvement of People Living with HIV/AIDS: Positive and Negative Effects of Involvement in Community Based Projects (Oral presentation, XIV International AIDS Conference, Barcelona, July 10, 2002).

Michael Carter, AIDS 2002: The Positives and Negatives of Involving People with HIV in NGOs. Posted in message to PWHA-NET list server (pwha-net@healthdev.net) on July 26, 2002.