Mobilizing Ethno-racial Community Leaders Against HIV/AIDS stigma
Evidence of Needs & Rationale for Project
Immigrants and refugees represent a growing proportion of Ontario’s overall population, and experience elevated prevalence and incidence rates of HIV infection relative to the general population. In 2005, immigrants and refugees comprised close to 20% of the total new HIV infections in Canada, while representing less than 1% of the total population (CIC, PHAC 2006). Studies have shown that over 40% of people from ‘endemic’ countries of origin contracted HIV after their arrival in Canada (Remis, 2004). Immigrants, refugees and non-status people face complex barriers in accessing services related to HIV prevention and support. They are at increased risk of HIV infection as a result of barriers to accessing culturally and linguistically sensitive information and services, social exclusion, challenges they experience in the migration and settlement processes, underemployment, and experiences of racism. Immigrant, refugee and non-status people living with HIV (IRN-PHAs) are often marginalized and excluded in their own ethno-racial communities due to stigma associated with their HIV status. The invisibility of PHA leadership in ethno-racial communities and media further reinforces community denial about the true impact of HIV, and consequently undermines much of the HIV prevention effort.
The negative effects of stigma and discrimination on the health of people living with HIV/AIDS and public health HIV prevention efforts have been well documented (Aggleton & Parker, 2003). HIV related stigmatization as a social process is associated with the increased emotional distress, feelings of guilt, shame, depression and social isolation experienced by PHAs (Heckman, et al., 2004; Kang, et al., Lawson et al.) It hampers efforts in the HIV ‘prevention-to-care continuum’ in that the fear of stigma and discrimination discourages individuals at risk of HIV infection from seeking information and testing (Kalichman & Simbayi, 2003; MacPhail et al., 2008; Obermeyer & Osborn, 2007; Smith & Morrison, 2006; UNAIDS, 2005) and impede people living with HIV/AIDS from accessing and adhering to treatment, seeking care and support or disclosing their HIV status (Hawkins, 2006; Körner , 2007; Rintamaki et al., 2006; Ware et al., 2006)
Effective HIV prevention interventions targeting immigrants, refugees and non-status people must recognize the complex social, political and environmental factors at play. Faith-based organizations, ethno-specific media, health and settlement agencies, and social justice advocates have traditionally played a vital role in the settlement and integration processes among immigrants, refugees and non-status people (Cao, 2005; George, 2003: George & Tsang, 2000; Liette, 2004; Zhang, 2006). For instance, a review and synthesis of case studies on immigrants and religion finds that religious beliefs and participation in faith based activities exert significance influence on immigrants’ ethnic and gender-based identities, their experiences of civic and political life, and the lives of their children (Cadge & Ecklund, 2007). Other studies suggest that immigrant populations rely heavily on media for health and health care information and media communication has the potential to be an effective tool to increase health literacy and influence health practices among immigrants and refugees (Milat et al., 2005; Anne, 1997; Brodie, et al., 1999). However, these sectors have thus far had limited engagement in HIV prevention, education and support. Systematic reviews of literature on faith-based health promotion show that most of these programs focus on health issues other than HIV (DeHaven et al., 2004; Peterson et al., 2002), and limits the impact of community responses to HIV/AIDS in ethno-racial communities in Canada, marginalizes HIV/AIDS from the communities’ priority agenda, and reinforces stigma and discrimination against people with HIV/AIDS (Leung, 2003).
Recent studies from the African Caribbean Council on HIV/AIDS in Ontario and the Committee for Accessible AIDS Treatment note that it is crucial to involve faith-based organizations and organizations in other sectors in the development of HIV prevention and support services (Lawson et al., 2006; Li, et al., 2007). A provincial working group has been established by the AIDS Bureau to explore partnerships with faith-based organizations to mobilize communities on HIV testing and education efforts. Collaborative partnerships and planning efforts have started to evolve between the settlement sector and the HIV sector to explore training and education opportunities to address the needs of HIV-affected and at-risk communities. However, there has been limited experience in cross-sectoral HIV prevention and anti-stigma interventions in Ontario, and significant gaps remain in our understanding of factors that prohibit or support effective mobilization of non-HIV sectors in ethno-racial HIV-related initiatives.
Overview of objectives and activities:
The overall long-term goal of CAAT is to improve the quality of life and the health of IRN-PHAs and their communities by reducing the incidence and negative impact of HIV. As discussed above, IRN communities in the Greater Toronto Area carry a disproportionate burden of HIV/AIDS. The current trend of HIV transmission among IRN communities is associated with complex determinants including social and economic marginalization, stigma and discrimination, and inequitable access to services and resources. This proposed community action research represents an innovative ‘first’ step towards addressing these issues and to achieve the long-term goal. Specifically, this study aims to:
- consolidate and expand the CAAT research team membership beyond the traditional HIV sector to increase its capacity;
- enhance access to existing knowledge on HIV and migration issues by conducting a comprehensive literature review and an inventory of HIV prevention programs for the IRN communities;
- increased the capacity of multi-sector stakeholders in IRN communities to effectively engage in research on HIV and migration;
- identify and formulate culturally relevant and appropriate interventions to address stigma and discrimination and increase the effectiveness of HIV prevention efforts;
- to develop a funding proposal on a multi-year research that will pilot, refine and evaluate the interventions identified in the current proposed study (potential funding sources include CIHR, CURA and other HIV funding agencies)
- Conduct knowledge transfer exchange activities to promote relevant policies and practices.
Key project activities will include: recruitment, consolidation and capacity building of research team to include more representations from target group PHAs and target sectors from the 5 ethno-racial communities; conducting in-depth literature review and program scan on stigma reduction interventions; conducting developmental research to explore the factors/issues affecting ethno-racial communities engagement; organizing multi-stakeholder think tanks to identify culturally appropriate stigma reduction interventions; and finally, engaging stakeholders with research team to co-develop research study proposals for long term funding.