Making a Difference - An NGO Guidebook for Facilitating the Involvement of PLWHA

This manual, a publication of AIDSNET, is on the issue of "Greater Involvement of People Living With HIV/AIDS (GIPA)." The guidebook is a sequel to the previously produced report: “Positive, Engaged, Involved - Capacity Building in connection with the Involvement of People Living with HIV/AIDS” (AIDSNET 2005).

The objective of the guidebook is to provide Danish non-governmental organisations (NGOs) and partner organisations in the South with inspiration, knowledge, and entry points to involve people living with HIV/AIDS (PLWHA) in the fight against HIV and AIDS, particularly in the geographical region of sub-Saharan Africa. The guide examines and reconstructs the GIPA model first set forth by the United Nations AIDS Foundation (UNAIDS) in 1994. It attempts to: make the model less linear and vertical, thus removing implications of hierarchy; clarify possible roles of PLWHA; and capture efforts of PLWHA organisations.

This new GIPA model, inspired by the work of Lironga Eparu, Namibia, and described in the first chapter, offers a circular configuration of categories for stronger interaction, synergy, and dialogue between the categories. The four categories of stakeholder involvement for PLWHA are: implementers, decision makers/experts, intended audience, and contributing speakers.

The second chapter covers positive and negative aspects of disclosure of one’s serostatus versus keeping one’s serostatus a secret and frames the following guidelines for NGOs:

• Disclosure cannot be seen as a prerequisite for HIV/AIDS interventions.
• From a human rights perspective, the decision of the PLWHA on disclosure must be respected.
• Inspiring PLWHA to disclose their serostatus strengthens PLWHA organisations and gives disclosers a vital role in the organisation.
• Before promoting public disclosure of an HIV positive person, his or her social networks must be considered.
• PLWHA must be involved as researchers on the topic of serostatus disclosure.

Chapters three to six deal with the four categories of PLWHA involvement described in the GIPA model. The emphasis is on the PLWHA perspective and centrality as recipients and participants in each category. Information on suggested entry points for NGO involvement with PLWHA and PLHWA organisations is included for each category. For example, the implementation section lists possible roles for PLWHA as counsellors, treatment supporters. health care workers, NGO programme managers and project officers, peer educators, outreach workers, and monitoring implementers. NGO entry points include: hiring, training, offering contracts with health care, considering travel costs and transport availability, and gender balance in employment.

Chapter seven covers the efforts of PLWHA organisations, roles of their members, challenges, and, again, entry points for NGOs to participate with them and benefit from their knowledge.