Pathways to PLWHA Involvement in CBOs and NGOs

Yes, we all agree that the contributions of PLWHA to HIV/AIDS interventions are crucial - but how to make this involvement happen? PLWHA and NGOs/CBOs face a paradoxical situation: the greatest barrier to PLWHA becoming part of prevention and care is the stigma that surrounds HIV. The prospect of stigma and rejection - on top of all their other problems - scares off many PLWHA who contemplate making their HIV status known to others. And so the epidemic, and those who live with its reality, remain silent and invisible to the rest of society. On the other hand, PLWHA who speak about their life openly and thereby give a "human face" to the epidemic, are perhaps the most effective weapon against stigma imaginable. This workshop looked at how could organisations make it possible for PLWHA to become involved? And what steps can PLWHA take to do so safely?

The Horizons program, implemented by the Population Council and sponsored by USAID, studied pathways to PLWHA involvement in Burkina Faso, Ecuador, India, and Zambia. They identified four stages of involvement: "access" means PLWHA are using services, but not involved in service provision; "inclusion" means they work as support staff in non-HIV activities; PLWHA "participate" when they have a paid job in the NGO for HIV-related work; they are "involved" when they are decision-makers and work at management level. The workshop focused on identifying specific steps that NGOs and PLWHA can take in order to make such involvement a reality. Workshop participants came from a great range of countries, and involved PLWHA as well as service providers.

Two large groups were formed who were given the task of mapping out the "stepping stones" to involvement of PLWHA. One group mapped out the steps for PLWHA, the other for organisations. The groups used concepts pre-formulated by the Horizons team but added their own concepts if they felt crucial features were missing. The mapping process evoked fascinating discussions. Group members quickly agreed that the first step for a PLWHA to become involved is to "accept one's HIV status". However, the next steps generated heated debate. Where does "motivation" fit in? Is that the first step after "accepting one's HIV status"? Or does motivation come by being associated with an NGO/CBO? And what kind of motivation are we talking about: "internal" motivation, such as "I want to play a positive role in HIV prevention"? Then what about external motivation, such as "I want to be paid for my work (like anyone else)"? The group felt that expecting to be paid for one's skills and "lived experience" was important for everyone, but crucial for PLWHA who live in very strained economic circumstances and have to fend for themselves and their families. Debates such as this intensified the enjoyment of the stepping stone process.

After each group had finished their structure, they visited the others and amid much laughter proposed more changes. Some of the steps identified for the PLWHA are: getting involved with a CBO/NGO, finding peer mentoring, training and skills acquisition, and becoming visible - first within a small group, then for a wider audience. Throughout the entire process, PLWHA should not be pressured to "go public" but decide for themselves to what degree they want to be involved and/or become known as a PLWHA.Their confidentiality should remain protected unless they are ready to give some of it up. Some of the steps NGOs/CBOs need to take to make it possible for PLWHA to join their organisation are: sensitisation of the organisation about HIV; development of draft policies to involve PLWHA;creating an atmosphere of respect, welcome and involvement of the views of PLWHA; fine-tuning policies with the PLWHA; provision of training and skills development; and providing opportunities for PLWHA involvement at all levels (depending on people's potential). Of course, there is more than one path to PLWHA involvement. Each organisation will have to determine for itself what steps it needs to take to create a positive, enabling environment for and with PLWHA.The stepping-stone process can be a useful tool to help the organisation and PLWHA think and debate about how to best go about making PLWHA involvement a reality.