AIDS IMPACT 2009 Abstracts

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Abstract 2

Accepted for Poster


If Positive Leaders make a difference, what makes a Positive Leader?


Positive Leaders are perceived to be important to sustaining the vitality of the People Living with HIV (PLHIV) social movement. However, no clarity exists on Positive Leadership as a concept. In order to better illuminate this concept, I wanted to investigate the existing views and perceptions of Positive Leaders among PLHIV around the world. This will contribute to building a grounded theory of Positive Leadership, lacking in the first 25 years of the HIV epidemic.


On behalf of the Living with HIV Partnership, I administered an anonymous online survey in 3 languages to more than 500 PLHIV one week prior to Living 2008: The Positive Leadership Summit in Mexico City, August 2008. Responses (n=94) to the first open-ended question “From your perspective, what are the characteristics of a strong HIV+ leader working in the response to HIV/AIDS?” were then reviewed, coded and categorised using grounded theory method (Strauss & Corbin 1990).


Five broad categories emerged as characteristics of Positive Leaders. The categories were experience, commitment, involvement, action and openness about sero-status. Experience and openness are further grouped under the cluster ‘perceived to be the sine qua non’ characteristics, while involvement and commitment are grouped under ‘actions that can be associated’ with evidence of Positive Leadership.


More multi-perspective community research is now needed to develop an accurate view of Positive Leaders and their social worlds, to develop the evidence-base on how Positive Leaders make a difference to the outcomes of HIV programmes, and to tailor evidence-based leadership programmes that can result in meaningful and active PLHIV participation, going beyond the current GIPA principle.