Uninformed, Misinformed, Mistreated: Unraveling the Social, Historical and Political Roots of Canadian Black Women's Disengagement From HIV Prevention
Black women in Canada face disproportionate rates of HIV infection, largely in the context of heterosexual relationships; but among this population there is low awareness of HIV risk, low use of existing HIV prevention methods and low participation in clinical trials for emerging HIV intervention methods. This community-based study explored factors that may contribute to disengagement with HIV information and research among Black women.
The study was conducted by a university-community team in Toronto, Canada using a sequential mixed methods design. Participants were recruited through community health clinics and ethno-specific agencies serving diverse populations of Black women. Qualitative research (4 focus groups, n=26; 6 key informant interviews) results were used to guide quantitative data collection (n=206) using a survey developed collaboratively with a community advisory board. Qualitative data were analyzed using thematic analysis, including line-by-line, axial and thematic coding, aided by NVivo. Survey data were summarized using frequencies and descriptive statistics.
Participants in both phases of research were women mostly (>80%) born outside of Canada, self-identifying as of African or Caribbean ethnicity (~10% multiple or other ethnicity) and well-educated (88% ≥ high school). Both the survey and focus groups revealed women were highly mistrustful of the government and pharmaceutical companies and believed that they would collude with physicians to expose them to risk. The majority (84%) believed the government could not be trusted and over one-third (37%) believed that the government puts corporate interests ahead of the population’s interests. Over two-thirds (68%) endorsed that pharmaceutical companies could not be trusted and 43% believed they might be used for research without giving consent. Over 60% endorsed that doctors might expose them to unnecessary risk for research and 42% believed that doctors would ask them to participate in research even if they thought it was harmful. Qualitative data revealed that histories of unethical research practices against Black populations around the world informed fear and mistrust of HIV research. In addition, focus groups discussions confirmed that few women believed they were vulnerable to HIV, attributing potential risk to the possibility of sexual assault – as reported in sensational media stories - but not sex within heterosexual relationships.
Conclusions and Implications:
The persistence of mistrust and misinformation among Canadian Black women has very high stakes for this population – HIV infection rates continue to increase. The government, pharmaceutical companies and the health care system must recognize their implication in that risk and work deliberately to undo the damage of past practices that have disengaged Black women from opportunities to promote prevention and sources of legitimate HIV information. This study also suggests that the media is implicated in distorting HIV information and must be engaged in equipping Black women, and other populations, with more accurate information.