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.”
The paper, “Online Health Awareness and Technology Affordance Benefits for Black Female Collegians – Maybe Not,” is published in the Journal of the American Medical Informatics Association. The paper was co-authored by Lynette Kvasny of Penn State. The work was supported by the National Science Foundation under grant numbers IIS-1144327 and IIS-114430.
Note to Editors: The study abstract follows.
“Online Health Awareness and Technology Affordance Benefits for Black Female Collegians – Maybe Not”
Authors: Fay Cobb Payton, North Carolina State University; Lynette Kvasny, Penn State University
Published: April 19, Journal of the American Medical Informatics Association
Objective – We investigate the technology affordances associated with and anticipated from an online HIV prevention awareness platform, myHealthImpactNetwork, intended to reach Black female college students. This population is at increased risk for HIV transmission, but is not often studied. In addition, this population regularly uses digital tools, including websites and social media platforms, to engage in health information seeking.
Results – Contrary to our proposition, the participants’ information needs did not align with the anticipated benefits associated with the technology affordances of the prevention awareness platform. Concerns about personal online social capital, reputation management and stigma limited participants’ willingness to engage with the HIV prevention content on the website.
Discussion – Although the participants’ use digital tools as a primary means of becoming informed about health, concerns about friends, family and others in their social network assuming that they were HIV infected limited their willingness to engage with myHealthImpactNetwork. Print media and conversations with healthcare professionals were preferred channels for HIV prevention information.
Conclusions – Perceptions of stigma associated with HIV negatively impact health information seeking and sharing online in the social networks in which Black college students engage. However, by understanding the unanticipated consequences, researchers can effectively design for cultures and sub-cultures infected and affected by health disparities.