The relationship between HIV-related stigma and HIV knowledge in African, Caribbean and Black communities in Ontario:Reports from the Keep It Alive! (KIA) evaluation study

Keep it alive! (KIA) was a community-based social marketing campaign developed and implemented by the African and Caribbean Council on HIV/AIDS in Ontario (ACCHO) from 2006-2009. KIA was designed to increase awareness of HIV and reduce HIV-related stigma in African, Caribbean and Black (ACB) communities, promote safer sex and HIV-testing, and to raise ACCHO’s profile among ACB communities. The first phase of the campaign consisted of images and messages urging an informed, practical and compassionate interest in HIV within the context of caring for one’s self, one’s family and ACB communities. The images and messages were disseminated through advertisements in public transit systems and community newspapers, as well as on posters, postcards, t-shirts, and condom packs. The campaign also included one public service announcement (PSA) for radio. The second phase included the continued dissemination of the images from the previous phase, in addition to nine PSAs for TV that featured ACB community members speaking about issues regarding HIV and AIDS. From 2009 to 2010, a team developed under the auspices of ACCHO implemented the KIA evaluation study to examine how the campaign was received and understood by ACB communities, and to assess community knowledge, attitudes, and behaviours in relation to HIV. The evaluation comprised focus groups and a survey among ACB communities in London, Ottawa and Toronto. A total of 48 individuals participated in seven focus groups in Toronto, London and, Ottawa. Overall, focus group participants felt that the KIA images were visually attractive and empowering with positive portrayals of Black people. However, they also suggested that the quality of the images may have overshadowed the messaging, and that ‘HIV’ and ‘AIDS’ were not displayed prominently enough. The campaign messaging was very subtle and a bolder HIV prevention message was needed. Conversely, because of the stigma associated with HIV, others preferred the more subtle approach. There were mixed reviews about a campaign that targeted ACB populations. Some participants were wary of HIV being perceived as a Black or African disease. Others held that it was encouraging to see a campaign implemented for and by Black people. Some participants distanced themselves from HIV and expressed a degree of skepticism as to whether HIV is a real issue for ACB communities in Canada. Focus group participants who were themselves living with HIV were more aware of the HIV landscape in ACB communities in Ontario and offered more nuanced perspectives on the campaign. The images were interpreted as demonstrating that people living with HIV can look vibrant, healthy and beautiful and the models were perceived as individuals who could be people living with HIV (PHAs) or family and friends. Participants in this particular focus group identified strongly with the ‘Keep It Alive!’ slogan and aligned the campaign values with attainable goals that could be achieved regardless of a positive diagnosis. Unlike other focus groups, participants did not mention the need for including PHA testimonies in future campaigns. The self-administered survey yielded a sample of 243 participants in Toronto, London, and, Ottawa. Of the twothirds (66.3%) who reported seeing KIA campaign images, 68.9% indicated that they found them to be appealing. More than half (53.2%) of all participants who saw the KIA images reported that the images increased their awareness of HIV/AIDS. Participants born in Africa and the Caribbean, and participants older than 30 years were more likely to report an increase of HIV/AIDS awareness. The local public transit system was the most common location participants reported having seen the campaign images. The TV PSA messages reported to be the most important included ‘always use a condom when you have sex (13.5%)’, and ‘preventing the spread of HIV is everyone’s business’ (13.5%). Among the participants who recognized the images and TV PSAs, 90.8% described the campaign as “very important” or “important” for ACB people in Ontario. The survey also measured HIV-related stigma using a scale developed by Visser et al (2008). The median score among participants was 1, indicative of low stigma levels. However, higher levels of stigma were seen in regards to items of a personal or intimate nature. For example, around half of participants (51.7%) agreed with the statement, “I would not drink from a cup if a person with HIV had just drunk from it”. Participants who were older, possessed higher levels of education, reported having tested for HIV in the past and found the KIA images appealing demonstrated lower levels of HIV-related stigma. The HIV knowledge scale measured participants’ level of knowledge about HIV. It was adopted from the CDC (1988) and modified by Leake (1997). The overall median was a score of 15 with 40% of participants scoring 16 or higher. This demonstrates relatively high levels of HIV knowledge. Participants who demonstrated higher levels of stigma also demonstrated a lesser knowledge about HIV. Participants who were older, had higher levels of education, reported having tested for HIV in the past and having seen KIA images demonstrated higher averages of HIV knowledge. Focus group participants made a number of recommendations for effective HIV campaigns among ACB communities. In regards to messaging, a call to action, a clear and visible HIV prevention message, information for newly diagnosed individuals and factual information about the HIV landscape in Canada were proposed. PHA testimonies, involvement of community or popular leaders, an HIV education component, and multi-sectoral participation were proposed as delivery strategies for future campaigns. Other considerations included giving attention to cultural, linguistic and religious diversity within ACB communities, addressing stigma associated with HIV as a Black/African disease, and considering campaign ideas that may be too subtle or extreme. Although the Keep It Alive! social campaign was successful in its reach and impact, the evaluation highlighted several issues. For example, ACB people who were born in Africa or the Caribbean often do not interpret HIV as an issue of concern for their communities in Canada (as opposed to the situation “back home”). Also, the tensions expressed in the focus groups around executing an effective HIV prevention campaign signified the need for creative and refined strategies for addressing the complexities associated with HIV. Developing and implementing HIV education and stigma reduction initiatives for younger ACB people can be of great value. Our findings also suggest a need for culturally sensitive interventions to address HIV disclosure.