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Picturing Participation is a community-based participatory research project that uses photography and other creative mediums to reflect on the meanings of engagement in the HIV sector.  We are a team of community members, researchers, and service providers that partnered with three local organizations to do this work.


The principles Nothing About Us, Without Us and  the Greater Involvement of People Living with HIV/AIDS stress the importance of meaningful inclusion of those living with, and most impacted by, HIV in all aspects of the HIV response. We wanted to document how these principles were being operationalized in diverse community settings: a youth-led HIV prevention and harm reduction program, an AIDS service organization, and a community-based HIV hospital.


Over a period of 10 months, we held 20 interactive photovoice workshops (and 17 interviews) with 36 clients, participants, peer workers, volunteers (with lived experience) and staff members at three organizations.  We gave everyone a camera and asked them to take pictures that answered the question: what does engagement mean to you?

Together, we visually represented, discussed, and analyzed how we understood engagement, and what it looks like in practice at three different sites.  This method is commonly called photovoice.  Engagement was defined broadly – from participating in programs; to influencing decision-making (within an organization, a program, or in one’s care) to co-leading programs or services.

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