title: Don't Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum.
abstract: Infertility affects women across the socioeconomic spectrum; however, it is by no means egalitarian in its distribution, nor uniform in its lived experience. Evidence shows striking disparities by income, race, and education in infertility prevalence, access to infertility services, and success rates after receiving infertility treatments. However, few studies so far have investigated disparities in patients' access to psychological support during the infertility journey. This paper undertakes a cyber-ethnography of the online patient forum, "Finding a Resolution for Infertility," hosted by RESOLVE: The National Infertility Association. It also draws from interviews with 54 infertility patients recruited from the forum. Our aim was to examine how social support operates within this virtual realm, by examining how the forum's language, norms, and values create and enforce categories of deserving and belonging among site users. We find that the forum's discourse privileges an infertility narrative we term the "persistent patient," in which a patient exhaustively researches treatment options, undergoes multiple cycles of treatment despite repeated failures, and ultimately achieves success (a healthy baby). Meanwhile, there is little to no discursive space for discussion of the financial and social resources necessary to act in accordance with this script. Thus, women without such resources can be alienated, silenced, and denied mental health support by this online community.
authors.affiliation: Department of Health Policy, Harvard Graduate School of Arts & Sciences, 14 Story St, Cambridge, MA, 02142, USA. Mihan_lee@hms.harvard.edu.
authors.forename: Mihan
authors.initials: M
authors.lastname: Lee
mesh_terms: D000328:Adult; D000884:Anthropology, Cultural; D005260:Female; D006801:Humans; D007247:Infertility, Female / Q000628:therapy*; D020407:Internet; D007407:Interviews as Topic; D012944:Social Support
keywords: Cyber-ethnography; Discourse analysis; Infertility; Persistence; Social support