A safe and efficacious HIV vaccine that is accessible and affordable to communities most vulnerable to HIV/AIDS is our greatest hope for halting the epidemic (Esparza et al., 2004). In Canada, the most vulnerable communities are Aboriginal and African Caribbean populations, injection drug users, and men who have sex with men (MSM), who are overrepresented among HIV incident infections (PHAC, 2007). Yet HIV vaccine trials have underrepresented women, people of color and injection drug users, among those most vulnerable to HIV/AIDS. Possible differences in vaccine functioning in different subpopulations and negative repercussions to future vaccine uptake if one's community was not included in safety and efficacy trials suggest the importance of clinical trial participation to the future effectiveness of HIV vaccines in controlling the epidemic. The purpose of this study was to explore in depth the perspectives of individuals from diverse marginalized communities on HIV vaccines and clinical trial participation.
A qualitative investigation was designed and implemented in partnership between the University of Toronto and community-based organizations. Nine focus groups were conducted with individuals recruited from diverse communities: black women (2 groups), MSM (2 groups), crack and injection drug users (2 groups), female sex workers (1 group) and Aboriginal people (2 groups). Six groups were HIV-negative populations and three HIV-positives. All focus groups were digitally recorded and transcribed verbatim. Narrative thematic analysis using line-by-line, axial and thematic coding and a constant comparative method was conducted with NVivo software (Charmaz, 2006). Triangulation of data sources and investigators enhance the validity of the findings.
Focus group participants (n=66) ranged from 21-66 years old (mean=39.9 years). Thirty-eight percent (n=25) were born outside Canada. Twenty-six percent (n=17) hadn't completed high school. Median annual income was $12 000.00. Barriers to HIV vaccine trial participation included concerns about side effects, HIV stigma, homophobia, mistrust of government, and discrimination from health care providers. Mistrust of government was particularly pronounced among Aboriginal participants, which was expressed as a barrier to trusting that a vaccine trial was safe and ethical. Black women reported barriers to participation due to racism in health care; this made them less inclined to initiate contact with medical research investigators. Aboriginal participants discussed cultural disconnects between traditional and western medicine. Women reported concerns regarding potential effects on fertility and future childbearing. Motivators for trial participation included altruism, monetary compensation, perceived health benefits and development of a women-controlled prevention technology. In particular, female sex workers reported HIV vaccines would provide added protection from HIV infection resulting from sexual violence.
Social workers have an integral role in cultural and gender appropriate approaches to creating access to HIV vaccine research and enabling informed decision-making among vulnerable communities. Many barriers to engaging diverse communities are social and structural, rather than individual-level or vaccine-specific. Structural interventions to address HIV stigma, homophobia, and racism may promote trial participation and health care access. Population-specific strategies include engagement of rural populations and traditional healers. Educational interventions to support trial literacy are essential to increasing diversity in HIV vaccine trials.