New research from North Carolina State University and Pennsylvania State University finds that black female college students were often unlikely to use online resources related to HIV prevention, due to the stigma associated with the disease and concerns that their social network would learn they were accessing HIV-related materials.
“We assumed that providing information about HIV prevention online would be an effective way of reaching black female college students,” says Fay Cobb Payton, an associate professor of information technology at NC State and lead author of a paper on the work. “We thought it would resonate and be accepted, and we were wrong.”
The researchers convened eleven focus groups, consisting of a total of 60 black women who were college students. Half of the focus groups were based in North Carolina, the others in Pennsylvania.
Based on the results of those focus groups, the researchers developed a website and social media tools containing culturally relevant, culturally sensitive information about HIV prevention designed to address the needs of black female college students. The online resources were then shared with members of the target population. The researchers conducted follow-up surveys, meetings and one-on-one interviews to determine how effective and useful the online resources were.
The results suggest that there are several barriers, including stigma and societal perceptions, which limit black women’s willingness to use social media to seek and share HIV prevention information even when the resources are tailored for the target population.
“We found that stigma by association was playing a significant role in limiting their use of our social media tools,” Payton says. “Even just interacting with educational information about HIV carried a social stigma. There was a fear, particularly among the Pennsylvania students, that engaging with the information would lead peers to think they were HIV positive.”
Both groups of students were concerned about how they’d be viewed as black women – by peers, family and larger social networks – if they were seen to be educating themselves about HIV. This concern motivated students to carefully manage where and how they seek HIV prevention resources.
“Study participants thought the online resources were great, but accessing the information appeared to carry a social cost,” Payton says. “They would rather get information via hard-copy, like pamphlets or brochures, because there’s no electronic footprint that their peers or family might see.
“Sometimes, as designers, we make assumptions about our audience,” Payton adds. “When we talk about creating educational resources for stigmatized health conditions, we need to be aware that there are culturally imposed limits to what people want to access and engage with online. So, attempts to educate various audiences about HIV or other culturally sensitive topics need to take into account how the target audience wants to access information.”
“Online Health Awareness and Technology Affordance Benefits for Black Female Collegians – Maybe Not,”. Fay Cobb Payton, Lynette Kvasny. Journal of the American Medical Informatics Association. DOI:10.1093/jamia/ocw017.Published online 19 April 2016.
Funder:National Science Foundation.