Digital HIV Activism in Russia: Agents and Agenda

Abstract

Health activism can play a significant role in improving the functioning of the healthcare system and in meeting the needs of the broadest population for quality healthcare by drawing attention to the most pressing issues and organizing collective efforts to address them. Social media has created favorable conditions for health activism. Many online social media communities are actively engaged in addressing the problems of people living with HIV (PLHIV), but the institutionalization of their activities and the focus of their efforts vary. As current media consumption is dominated by the Internet and social networks, the agenda of these communities can significantly influence PLHIV’s information perceptions, conditioning and guiding their health behaviors, both positively and negatively. The framework of our research is 'agenda-­setting theory' adapted to the field of online health communication. The main research question is what thematic agenda is being formed in social media by different agents of digital HIV activism. Based on a preliminary typology, a sample of 14 online HIV activism communities represented on the social network vkontakte was formed. It included communities of HIV NGOs, mutual aid communities, and HIV / AIDS denial communities. A sample of 1 850 public posts published in selected communities from November 2021 to November 2022 was created. The selected posts were analyzed using open coding and thematic analysis techniques. Based on the results of the analysis, it is concluded that digital HIV activism, presented in the space of the social network vkontakte, differs from classical ideas about social health activism and is a combination of the bureaucratic agenda of NGOs, the individual counseling and mutual support strategies offered by mutual aid communities, as well as the conspiracy agenda of HIV / AIDS denial communities. The idea of changing the institutional conditions is absent from the agenda of the communities reviewed.