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.

A Mixed-Methods Outcome Evaluation of a Mentorship Intervention for Canadian Nurses in HIV Care

“…More recently, Solomon and colleagues (2011) implemented and evaluated a model linking PLWH with experienced HIV clinicians to mentor junior rehabilitation professionals new to HIV care (mentees). Having both a clinical mentor and a mentor living with HIV was perceived by mentors and mentees as a strength, and honored the Greater Involvement of People living with AIDS principles (Travers et al, 2008). Hence, we built on this work to include mentors living with HIV as a key component in the nursing mentorship intervention.…”

“…Community-based research has the potential to contribute to capacity building and community development (Caine & Mill, 2016;Hacker et al, 2012;Israel et al, 2010) and to benefit both the research endeavor and the stakeholders involved (Flicker, Savan, Kolenda, Mildenberger, 2007). Our inclusion of PLWH as co-investigators and advisors to this research, as well as PLWH mentor participants, ensured that the research was grounded in Greater Involvement of People living with AIDS principles (Travers et al, 2008). …”

“…Recent mentorship models highlighted the benefits and challenges of involving individuals with diverse skill sets, areas of expertise, and mentorship qualities (Callaghan et al, 2009;Copley & Nelson, 2012). (Travers et al, 2008). Hence, we built on this work to include mentors living with HIV as a key component in the nursing mentorship intervention.…”

Barriers to Meaningful Involvement in AIDS Service Organizations in Three Canadian Maritime Provinces

“…GIPA/MIPA has been defined and understood in a variety of ways within the literature (Stephens, 2004;Travers, et al, 2008), however the core idea is the commitment to ensuring that the voices of PHAs are heard (White, 2001) and that human rights are respected (Ontario AIDS Network, 2011). GIPA/MIPA is often considered a model of best practice in local, national, and international organizations that respond to the HIV/AIDS epidemic (Stephens, 2004;UNAIDS 1999UNAIDS , 2004).…”

“…They found that lack of resources, inadequate procedures for providing feedback, insufficient clarity about the purpose of consultation, unsuitable structures for encouraging meaningful engagement, and concern over the group representativeness of those involved, were all significant in interfering with meaningful involvement. Travers et al (2008) surveyed and interviewed senior managers from ASOs in Ontario about barriers and facilitators to PHAs being involved in Community-Based Research (CBR). Findings suggested that HIV related stigma, health challenges, lack of capacity, distrust, other priorities, lived experience not being valued, limited mentoring opportunities, and insufficient financial compensation all contributed to low PHA involvement in the research.…”