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Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum

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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.

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Notes

  1. This dissertation focuses predominantly on female experiences of infertility. This is because, regardless of physiology, the burden of infertility treatment is predominantly borne by women, in terms of necessary tests and treatment. Rapp (2011) argues, “women bear the physiological burden of most interventions even when the failure to achieve a pregnancy is owed to male infertility factors.” Therefore, I focus on women’s experiences navigating through the health care system when seeking treatment for infertility.

  2. Names have been changed to protect privacy.

  3. Of course, women commenting on this forum are a self-selected sample of patients who are more likely to have had failed cycles, since those who had successes would likely leave the forum, or become active on a different forum about pregnancy or parenting.

  4. N.B. I am not focusing here on actual health treatment costs and flaws in the system, but how financial barriers are discussed in these forums and how it affects the kinds of social support provided therein.

  5. Most of the women on the forum seemed to be insured for infertility treatments, under plans with varying degrees of generosity. One post asking how much women paid for their treatments, generated answers clustering around 5 k for those with insurance, and in the 35 k and 50 k ballpark for those funding their own treatments.

  6. Granted, many users seem specifically to ask for encouragement and advice in tough situations, so it seems natural that posts don’t often address giving up. Nevertheless, the overall impact appears to be that there isn’t a space for that conversation on the online forum, even if some users do seek to discuss alternatives to continuing treatment.

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Authors and Affiliations

  1. Department of Health Policy, Harvard Graduate School of Arts & Sciences, 14 Story St, Cambridge, MA, 02142, USA

    Mihan Lee

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  1. Mihan Lee
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Correspondence to Mihan Lee.

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Funding

This study was funded by the Harvard Graduate School of Arts & Sciences’ Christopher G. P. Walker Fellowship, Merit Term-Time Fellowship, and Dissertation Completion Fellowship.

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Mihan Lee declares that she has no conflicts of interest.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

This article does not contain any studies with animals performed by any of the authors.

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Informed consent was obtained from all individual participants included in the study.

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Lee, M. Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum. Cult Med Psychiatry 41, 341–367 (2017). https://doi.org/10.1007/s11013-016-9515-6

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