It is an accepted "fact" that involving people with HIV in the planning and delivery of non-governmental HIV services improves the quality of both the services provided and the quality of life of the HIV-positive people giving their time, energy and experience.
Yet this belief is based on assumption rather than research.
In an attempt to see what impact involving HIV-positive people really has, investigators interviewed 800 HIV-positive people involved in HIV services in Burkina Faso, Zambia, Ecuador and India. To assess to the effect of their involvement on NGOs, 17 service providers were also interviewed.
The study identified four types of involvement by HIV-positive people: 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.
The investigators confirmed that the involvement of people with HIV in non governmental services did indeed have positive effects. In particular they found that all four types of involvement improved mental health. Accessing services which offered peer support were associated with a reduction in self-imposed isolation stigma. Participation and involvement in an HIV organisation was also seen to dramatically increase access to HIV information, acceptance of HIV status and result in enhanced self-esteem.
However, there were also negative effects for the people with HIV. All types of involvement could result in increased stigma and discrimination if they entailed publicly identifying 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.
For the 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 which people with HIV had to face. However, high levels of morbidity and mortality often disrupted services and led to increased costs.
The investigators concluded that there were indeed benefical effects for both HIV-positive people and voluntary service providers. The benefits were greatest for HIV-positive people if their expectations of the benefits of involvement were realistic and for the organisation if they included people with HIV in the provision of services and the management and planning of the organisation.
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, 10 July 2002.