Studying Stigmatized Populations through Online-Communities

Social media gives sociologists a new possibility for obtaining data by unobtrusive methods. For some research tasks the analysis of information produced by members of online-communities can replace collecting data by reactive methods, reducing a field phase of work, avoiding imposition of thematic structure to discussion and gaining time for deep analysis. Online-communities could be considered as a tool for sociologists to study hard-to-reach populations. The use of online-communities as a space for research allows one to collect data directly from communication between actors, not mediated by an interviewer and to find focused information given that communication in these internet spaces are organized around specific topics that participants choose themselves.

This presentation gives an example of the use of online-communities to conduct social research of people living with HIV (PLHIV) in Russia. In many countries, including Russia, PLHIV are subjected to high levels of stigma and discrimination. These high levels of stigma may make it difficult for researchers to recruit PLHIV and for participants to speak openly about their problems. PLHIV have created numerous online-communities within internet, including the Russian-language internet space to discuss their problems with others who are in similar situations.

Studying an online-community of PLHIV allowed us to gather perspectives directly from the community of PLHIV rather than introducing predetermined questions. We were able to learn information that was important to the community of PLHIV rather than introducing topics and asking them to reflect on situations that may or may not be applicable to their lives. Online-communities could be considered as a good tool for sociologists to study hard-to-reach populations and sensitive topics, but this tool have several limitations such as questionable generalization to populations not represented in internet, restricted possibility to ask clarifying or follow up questions and so on.