The greater involvement of people living with AIDS principle: theory versus practice in Ontario's HIV/AIDS community-based research sector

Abstract

Drawing on the Greater Involvement of People with HIV/AIDS (GIPA) principle, the HIV/AIDS movement began to “democratize” research in Canada in the mid-1990s. To date, there is little evidence about the success of the community-based research (CBR) movement in relation to the implementation of GIPA. We draw on findings from a larger study examining barriers and facilitating factors in relation to HIV-related CBR in Ontario, Canada. An online survey was completed by 39 senior managers in Ontario AIDS service organizations (ASOs). Twenty-five in-depth, semi-structured interviews were then conducted to further explore the survey findings. Survey respondents reported that, compared to researchers and frontline service providers, people living with HIV/AIDS (PLWHA) tended to be the least involved in all stages (input, process and outcome) of CBR projects. AIDS service organizations with a mandate that included serving rural and urban communities reported even lower levels of PLWHA involvement in CBR. Qualitative data reveal complex barriers that make meaningful PLWHA engagement in CBR difficult, including: HIV-related stigma; health-related challenges; “credentialism”; lack of capacity to engage in research; other issues taking priority; and mistrust of researchers. Facilitating factors included valuing lived experience; training and mentoring opportunities; financial compensation; trust building; and accommodating PLWHA's needs. While there is strong support for the GIPA principles in theory, practice lags far behind.

Keywords:

• Canada
• HIV
• Greater Involvement of People with HIV/AIDS
• community-based participatory research
• community-based research

Acknowledgements

The authors wish to thank Ms. Louise Binder of the Canadian Treatment Action Council for her comments on an earlier draft of this paper.

Notes

1. In Canada, the term “community-based research” (CBR) is used more commonly than CBPR, particularly in the HIV/AIDS sector. To situate this paper in the Canadian context, we have chosen to use CBR in this paper as well.

2. While HIV is largely concentrated in urban centres, a number of ASOs (especially those serving Northern communities) have a mandate to work with rural and Aboriginal populations.