Infrastructural and network support in the illness experience: The role of community crowdsourcing in self-care

Abstract

Social sharing within pseudonymous online communities can assist- or hinder- the self-management of health care and emphasize challenges associated with chronic illness. For those who are affected by chronic illness who participate in a public online community, the breadth of topics discussed in a corpus of a pseudonymous group can lend insight into tracking the interaction processes and outcomes. Examining the topics discussed in the endometriosis subreddit (r/endo) informs public health strategies as well as ethical considerations in health care surrounding stigmatized illness in a public community. In the present study, the data corpus of r/endo was analyzed and scraped, employing computational data mining techniques to uncover the discursive practices within the community. The topics of self-management is constructed by diagnosed and undiagnosed patients; endometriosis etiology and understanding symptoms negotiated within the community. In an online community for those who face unique health challenges from endometriosis, we argue that users engage in a form of community crowdsourcing via information exchange and network support, spurred by the platform affordances of Reddit.