IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v216y2018icp74-80.html
   My bibliography  Save this article

‘Recurrent losers unite’: Online forums, evidence-based activism, and pregnancy loss

Author

Listed:
  • Kuchinskaya, Olga
  • Parker, Lisa S.

Abstract

Women with recurrent pregnancy loss face unique challenges associated with the social invisibility of their condition, patchy medical knowledge about it, and often intransigent positions of doctors. We approach online forums as sites of knowledge production and examine discussions among women with recurrent miscarriages. We observe that some forum participants gather, summarize, and share experience-based and research-based information in order to challenge certain medical conceptions. We describe these efforts as an example of individual patients’ evidence-based activism enabled by new media platforms and other technoscientific tools available to the public.

Suggested Citation

  • Kuchinskaya, Olga & Parker, Lisa S., 2018. "‘Recurrent losers unite’: Online forums, evidence-based activism, and pregnancy loss," Social Science & Medicine, Elsevier, vol. 216(C), pages 74-80.
    • Handle: RePEc:eee:socmed:v:216:y:2018:i:c:p:74-80
    DOI: 10.1016/j.socscimed.2018.09.014
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953618304970
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2018.09.014?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Madeleine Akrich & Orla O'Donovan & Vololona Rabeharisoa, 2013. "The entanglement of scientific and political claims:towards a new form of patients’ activism," CSI Working Papers Series 035, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    2. Fox, N.J. & Ward, K.J. & O'Rourke, A.J., 2005. "The 'expert patient': empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the Internet," Social Science & Medicine, Elsevier, vol. 60(6), pages 1299-1309, March.
    3. Layne, Linda L., 2006. "Pregnancy and infant loss support: A new, feminist, American, patient movement?," Social Science & Medicine, Elsevier, vol. 62(3), pages 602-613, February.
    4. Dumit, Joseph, 2006. "Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses," Social Science & Medicine, Elsevier, vol. 62(3), pages 577-590, February.
    5. Simmons, Rebecca K. & Singh, Gita & Maconochie, Noreen & Doyle, Pat & Green, Judith, 2006. "Experience of miscarriage in the UK: Qualitative findings from the National Women's Health Study," Social Science & Medicine, Elsevier, vol. 63(7), pages 1934-1946, October.
    6. Fordyce, Lauren, 2013. "Accounting for fetal death: Vital statistics and the medicalization of pregnancy in the United States," Social Science & Medicine, Elsevier, vol. 92(C), pages 124-131.
    7. Madeleine Akrich, 2010. "From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet," Sociological Research Online, , vol. 15(2), pages 116-132, May.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Claire Edwards & Etaoine Howlett & Madeleine Akrich & Vololona Rabeharisoa, 2012. "Attention deficit hyperactivity disorder in France and Ireland: parents' groups' scientific and political framing of an unsettled condition," CSI Working Papers Series 024, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    2. Locock, Louise & Nettleton, Sarah & Kirkpatrick, Susan & Ryan, Sara & Ziebland, Sue, 2016. "‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage," Social Science & Medicine, Elsevier, vol. 154(C), pages 85-92.
    3. Trundle, Catherine, 2011. "Biopolitical endpoints: Diagnosing a deserving British nuclear test veteran," Social Science & Medicine, Elsevier, vol. 73(6), pages 882-888, September.
    4. Prior, Lindsay & Evans, Meirion R. & Prout, Hayley, 2011. "Talking about colds and flu: The lay diagnosis of two common illnesses among older British people," Social Science & Medicine, Elsevier, vol. 73(6), pages 922-928, September.
    5. Philippe Batifoulier & John Latsis & Jacques Merchiers, 2010. "Les priorités de la prise en charge financière des soins. Une approche par la philosophie du besoin," EconomiX Working Papers 2010-2, University of Paris Nanterre, EconomiX.
    6. Phillips, Tarryn, 2012. "Repressive authenticity in the quest for legitimacy: Surveillance and the contested illness lawsuit," Social Science & Medicine, Elsevier, vol. 75(10), pages 1762-1768.
    7. Chandwani, Rajesh & Edacherian, Saneesh & Sud, Mukesh, 2019. "Whose Empowerment? National Digital Infrastructure and India’s Healthcare sector," IIMA Working Papers WP 2019-02-01, Indian Institute of Management Ahmedabad, Research and Publication Department.
    8. Schaepe, Karen Sue, 2011. "Bad news and first impressions: Patient and family caregiver accounts of learning the cancer diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 912-921, September.
    9. Adams, Samantha A., 2011. "Sourcing the crowd for health services improvement: The reflexive patient and "share-your-experience" websites," Social Science & Medicine, Elsevier, vol. 72(7), pages 1069-1076, April.
    10. Bernardi, Roberta & Wu, Philip F., 2022. "Online health communities and the patient-doctor relationship: An institutional logics perspective," Social Science & Medicine, Elsevier, vol. 314(C).
    11. Vololona Rabeharisoa & Michel Callon & Angela Marques Filipe & João Arriscado Nunes & Florence Paterson & Frédéric Vergnaud, 2012. "The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research," CSI Working Papers Series 026, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    12. Madeleine Akrich, 2010. "From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet," Sociological Research Online, , vol. 15(2), pages 116-132, May.
    13. Brian Walitt & Richard L Nahin & Robert S Katz & Martin J Bergman & Frederick Wolfe, 2015. "The Prevalence and Characteristics of Fibromyalgia in the 2012 National Health Interview Survey," PLOS ONE, Public Library of Science, vol. 10(9), pages 1-16, September.
    14. Brothers, Sarah, 2019. "A good “doctor” is hard to find: Assessing uncredentialed expertise in assisted injection," Social Science & Medicine, Elsevier, vol. 237(C), pages 1-1.
    15. Cohn, Simon & Dyson, Clare & Wessely, S., 2008. "Early accounts of Gulf War illness and the construction of narratives in UK service personnel," Social Science & Medicine, Elsevier, vol. 67(11), pages 1641-1649, December.
    16. Scavarda, Alice & Ariel Cascio, M., 2022. "Embracing and rejecting the medicalization of autism in Italy," Social Science & Medicine, Elsevier, vol. 294(C).
    17. Read, John, 2008. "Schizophrenia, drug companies and the internet," Social Science & Medicine, Elsevier, vol. 66(1), pages 99-109, January.
    18. Vololona Rabeharisoa & Orla O'Donovan, 2013. "‘Europe of patients, Europe for patients’: the Europeanization of healthcare policies by European patients’ organizations," CSI Working Papers Series 030, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    19. Greenfield, Geva & Pliskin, Joseph S. & Feder-Bubis, Paula & Wientroub, Shlomo & Davidovitch, Nadav, 2012. "Patient–physician relationships in second opinion encounters – The physicians’ perspective," Social Science & Medicine, Elsevier, vol. 75(7), pages 1202-1212.
    20. Almudena Alameda Cuesta & à lvaro Pazos Garciandía & Cristina Oter Quintana & Marta Elena Losa Iglesias, 2021. "Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences," Clinical Nursing Research, , vol. 30(1), pages 32-41, January.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:216:y:2018:i:c:p:74-80. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.