Skip to main content

Advertisement

Log in

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

  • Original Paper
  • Published:
Culture, Medicine, and Psychiatry Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

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.

References

  • Andrews, Michelle 2011 Should Infertility Treatment be Considered Essential? In Kaiser Health News.

  • Baker, V.L., B. Luke, M.B. Brown, R. Alvero, J.L. Frattarelli, R. Usadi, D.A. Grainger, and A.Y. Armstrong 2010 Multivariate Analysis of Factors Affecting Probability of Pregnancy and Live Birth with In Vitro Fertilization: an Analysis of the Society for Assisted Reproductive Technology Clinic Outcomes Reporting System. Fertility and Sterility 94(4): 1410–1416.

    Article  Google Scholar 

  • Becker, G., and R.D. Nachtigall 1994 ‘Born to be a Mother’: the Cultural Construction of Risk in Infertility Treatment in the U.S. Social Science and Medicine 39(4): 507–518.

    Article  Google Scholar 

  • Bell, Ann V. 2009 “It’s Way Out of My League” Low-Income Women’s Experiences of Medicalized Infertility. Gender and Society 23(5): 688–709.

    Article  Google Scholar 

  • Bell, Ann V. 2014 Misconception: Social Class and Infertility in America. New Brunswick: Rutgers University Press.

  • Bhuyan, R. 2008 The Production of the “Battered Immigrant” in Public Policy and Domestic Violence Advocacy. Journal of Interpersonal Violence 23(2): 153–170.

    Article  Google Scholar 

  • Bitler, M., and L. Schmidt. 2006 Health Disparities and Infertility: Impacts of State-Level Insurance Mandates. Fertility and Sterility 85(4): 858–865.

    Article  Google Scholar 

  • Butler, J. 1990 Gender Trouble: Feminism and the Subversion of Identity. New York: Routledge.

    Google Scholar 

  • Butts, S.F., and D.B. Seifer. 2010 Racial and Ethnic Differences in Reproductive Potential Across the Life Cycle. Fertility and Sterility 93(3): 681–690.

    Article  Google Scholar 

  • Ceballo, R, E.T. Graham, and J. Hart 2015 Silent and Infertile: an Intersectional Analysis of the Experiences of Socioeconomically Diverse African American Women with Infertility. Psychology of Women Quarterly 39(4): 497–511.

  • Chandra, A., C.E. Copen, and E.H. Stephen. 2013 Infertility and Impaired Fecundity in the United States, 1982–2010: Data from the National Survey of Family Growth. National Health Statistics Reports 67: 1–19.

    Google Scholar 

  • Cohen, S., and T.A. Wills 1985 Stress, Social Support, and the Buffering Hypothesis. Psychological Bulletin 98(2): 310–357.

    Article  Google Scholar 

  • Cohen, Sheldon, Lynn G. Underwood, and Benjamin H. Gottlieb 2000 Social Support Measurement and Intervention: a Guide for Health and Social Scientists. Oxford/New York: Oxford University Press.

    Book  Google Scholar 

  • Colen, Shellee 1995 ‘Like a Mother to Them’: Stratified Reproduction and West Indian Childcare Workers and Employers in New York. In Conceiving the New World Order: the Global Politics of Reproduction. F.D. Ginsburg and Rayna Rapp, eds., pp. 78–102. Berkeley: University of California Press.

  • Culley, L. 2009 Dominant Narratives and Excluded Voices: Research on Ethnic Differences in Access to Assisted Conception in More Developed Societies. In Marginalized Reproduction. L. Culley, N. Hudson, and F. Van Rooij, eds., pp. 17–33. Sterling, VA: Earthscan.

  • Dale, Sherry. 2010 Mind Matters: Infertility Stigma and Shame. In Psychology. http://www.iaac.ca: Fertility Matters.

  • Dictionary.com 2015 Stigma.

  • Evers, J.L. 2002 Female Subfertility. Lancet 360(9327): 151–159.

    Article  Google Scholar 

  • Feinberg, E.C., Frederick W. Larsen, Robert M. Wah, Ruben J. Alvero, and Alicia Y. Armstrong 2007 Economics may not Explain Hispanic Underutilization of Assisted Reproductive Technology Services. Fertility and Sterility 88(5): 1439–1441.

    Article  Google Scholar 

  • Foucault, M. 1982 The Archaeology of Knowledge. New York: Pantheon Books.

    Google Scholar 

  • Fujimoto, V.Y., Barbara Luke, Morton B. Brown, Tarun Jain, Alicia Armstrong, David A. Grainger, Mark D. Hornstein, and Society for Assisted Reproductive Technology Writing Group 2010 Racial and Ethnic Disparities in Assisted Reproductive Technology Outcomes in the United States. Fertility and Sterility 93(2): 382–390.

    Article  Google Scholar 

  • Galhardo, A., José Pinto-Gouveia, Marina Cunha, and Marcela Matos 2011 The Impact of Shame and Self-Judgment on Psychopathology in Infertile Patients. Human Reproduction 26(9): 2408–2414.

    Article  Google Scholar 

  • Good, M.D. 2001 The Biotechnical Embrace. Culture, Medicine and Psychiatry 25(4): 395–410.

    Article  Google Scholar 

  • Greil, Arthur L. 1991 Not Yet pregnant: Infertile Couples in Contemporary America. New Brunswick, NJ: Rutgers University Press.

  • Inhorn, M.C., and M.H. Fakih 2006 Arab Americans, African Americans, and Infertility: Barriers to Reproduction and Medical Care. Fertility and Sterility 85(4): 844–852.

    Article  Google Scholar 

  • Inhorn, M.C. Ceballo, R., and Nachtigall, R. 2009 Marginalized, Invisible, and Unwanted: American Minority Struggles with Infertility and Unwanted Conception. In Marginalized Reproduction. L. Culley, N. Hudson, and F. Van Rooij, eds., pp. 17–33. Sterling, VA: Earthscan.

  • Internetlivestats.com (2015) United States Internet Users (Vol. 2015).

  • Jain, T. 2005 Disparities in Access to Infertility Services in a State with Mandated Insurance Coverage. Fertility and Sterility 84(1): 221–223.

    Article  Google Scholar 

  • Jain, T. 2006 Socioeconomic and Racial Disparities Among Infertility Patients Seeking Care. Fertility and Sterility 85(4): 876–881.

    Article  Google Scholar 

  • Joy, Melanie. 2013 Speaking Truth to Power: Understanding the Dominant, Animal-Eating Narrative for Vegan Empowerment and Social Transformation (Vol. 2015). O.G. Planet, eds.

  • Kahlor, LeeAnn, and Michael Mackert 2009 Perceptions of Infertility Information and Support Sources Among Female Patients Who Access the Internet. Fertility and Sterility 91(1): 83–90.

    Article  Google Scholar 

  • Kozinets, Robert V. 2006 Netnography 2.0. Handbook of Qualitative Research Methods in Marketing, pp. 129–142. Cheltenham: Edward Elgar Publishing.

  • Lee, M. forthcoming ‘Everything I Could Possibly Do’: Enabling Persistence and Self-Advocacy for Patients with Infertility in the US.

  • Lombardo, M. 2005 The Emotional Stigma of Infertility. In Conceive.

  • Luke, B., Morton B. Brown, David A. Grainger, Marcelle Cedars, Nancy Klein, Judy E. Stern, and Society for Assisted Reproductive Technology Writing Group. 2010 Practice Patterns and Outcomes with the Use of Single Embryo Transfer in the United States. Fertility and Sterility 93(2): 490–498.

    Article  Google Scholar 

  • Luke, Barbara, Morton B. Brown, Judy E. Stern, Stacey A. Missmer, Victor Y. Fujimoto, and Richard Leach 2011 Racial and Ethnic Disparities in Assisted Reproductive Technology Pregnancy and Live Birth Rates Within Body Mass Index Categories. Fertility and Sterility 95(5): 1661–1666.

    Article  Google Scholar 

  • Macaluso, Maurizio, Tracie J. Wright-Schnapp, Anjani Chandra, Robert Johnson, Catherine L. Satterwhite, Amy Pulver, Stuart M. Berman, Richard Y. Wang, Sherry L. Farr, and Lori A. Pollack 2010 A Public Health Focus on Infertility Prevention, Detection, and Management. Fertility and Sterility 93(1): 16 e1–16 e10.

  • Malik, S.H., and N.S. Coulson 2008 Computer-Mediated Infertility Support Groups: An Exploratory Study of Online Experiences. Patient Education and Counseling 73(1): 105–113.

  • Malik, S.H., and N.S. Coulson 2010 Coping with Infertility Online: An Examination of Self-Help Mechanisms in an Online Infertility Support Group. Patient Education and Counseling 81(2): 315–318.

  • Murthy, Dhiraj 2011 Emergent Digital Ethnographic Methods for Social Research. In Handbook of Emergent Technologies in Social Research. Sharlene Hesse-Biber, ed., pp. 158–179. Oxford: Oxford University Press.

    Google Scholar 

  • Porter, Maureen, and Siladitya Bhattacharya 2008 Helping Themselves to Get Pregnant: A Qualitative Longitudinal Study on the Information-Seeking Behaviour of Infertile Couples. Human Reproduction 23(3): 567–572.

  • RESOLVE 2015 Hidden No More: The Hidden Emotions of Infertility (Vol. 2015). Resolve: The National Infertility Association.

  • Seifer, D.B., R. Zackula, and D.A. Grainger 2010 Trends of Racial Disparities in Assisted Reproductive Technology Outcomes in Black Women Compared with White Women: Society for Assisted Reproductive Technology 1999 and 2000 vs. 2004–2006. Fertility and Sterility 93(2): 626–635.

    Article  Google Scholar 

  • Skågeby, Jörgen 2010 Online Ethnographic Methods: Towards. Handbook of Research on Methods and Techniques for Studying Virtual Communities: Paradigms and Phenomena, pp. 410–428.

  • Slauson-Blevins, K.S., J. McQuillan, and A.L. Greil 2013 Online and In-Person Health-Seeking for Infertility. Social Science and Medicine 99: 110–115.

    Article  Google Scholar 

  • Stephen, E.H., and A. Chandra 2000 Use of Infertility Services in the United States: 1995. Family Planning Perspectives 32(3): 132–137.

    Article  Google Scholar 

  • Swan, M. 2009 Emerging Patient-Driven Health Care Models: an Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking. International Journal of Environmental Research and Public Health 6(2): 492–525.

    Article  Google Scholar 

  • Thoits, P.A. 1986 Social Support as Coping Assistance. Journal of Consulting and Clinical Psychology 54(4): 416–423.

    Article  Google Scholar 

  • Weissman, Ariel, Lynda Gotlieb, Susan Ward, Ellen Greenblatt, and Robert F. Casper 2000 Use of the Internet by Infertile Couples. Fertility and Sterility 73(6): 1179–1182.

    Article  Google Scholar 

  • Whiteford, L.M., and L. Gonzalez 1995 Stigma: the Hidden Burden of Infertility. Social Science and Medicine 40(1): 27–36.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Mihan Lee.

Ethics declarations

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.

Conflict of interest

Mihan Lee declares that she has no conflicts of interest.

Ethical approval

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.

Informed consent

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

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11013-016-9515-6

Keywords

Navigation