IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v307y2022ics0277953622004907.html
   My bibliography  Save this article

Black boxes and information pathways: An actor-network theory approach to breast cancer survivorship care

Author

Listed:
  • Lefkowitz, Deborah

Abstract

Many women diagnosed with breast cancer today can expect to live long after completing their treatment. This growing population of survivors encounters distinct post-treatment health and information needs. Existing survivorship care models take information as a given, black boxing it. I use Actor-Network Theory to examine how information actually works for women after they complete breast cancer treatment, and how it shapes their understanding of survivorship. I draw on in-depth interviews with breast cancer survivors (n = 82) and a wide range of providers (n = 84) in a medically underserved region of Southern California. Black boxes and information pathways convey experiential dimensions of cancer care; they are also metaphoric constructs. The black box metaphor refers to the cancer experience as a container; the pathways metaphor refers to a journey. Each of these metaphors expresses salient dimensions of the cancer experience and has implications for post-treatment survivorship. When healthcare information flows smoothly and invisibly, its pathways become black boxed. Black boxes can be helpful when they function effectively. But since black boxes conceal their inner workings, it is challenging to intervene when difficulties arise. I provide three examples of difficulties that complicate women's transition to post-treatment survivorship: (1) when survivors fail to recognize treatment-related late effects, (2) do not understand they have a terminal diagnosis, or (3) worry that their treatment accomplished nothing. Contextualized within survivorship scholarship, this study recommends opening black boxes to examine how information pathways could connect women differently to improve survivorship care.

Suggested Citation

  • Lefkowitz, Deborah, 2022. "Black boxes and information pathways: An actor-network theory approach to breast cancer survivorship care," Social Science & Medicine, Elsevier, vol. 307(C).
  • Handle: RePEc:eee:socmed:v:307:y:2022:i:c:s0277953622004907
    DOI: 10.1016/j.socscimed.2022.115184
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953622004907
    Download Restriction: Full text for ScienceDirect subscribers only

    File URL: https://libkey.io/10.1016/j.socscimed.2022.115184?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. Del Vecchio Good, Mary-Jo & Munakata, Tseunetsugu & Kobayashi, Yasuki & Mattingly, Cheryl & Good, Byron J., 1994. "Oncology and narrative time," Social Science & Medicine, Elsevier, vol. 38(6), pages 855-862, March.
    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. Battin, Gudrun Songøygard & Romsland, Grace Inga & Christiansen, Bjørg, 2021. "The puzzle of therapeutic emplotment: creating a shared clinical plot through interprofessional interaction in biopsychosocial pain rehabilitation," Social Science & Medicine, Elsevier, vol. 277(C).
    2. Sanders, Caroline & Rogers, Anne & Gately, Claire & Kennedy, Anne, 2008. "Planning for end of life care within lay-led chronic illness self-management training: The significance of 'death awareness' and biographical context in participant accounts," Social Science & Medicine, Elsevier, vol. 66(4), pages 982-993, February.
    3. Sarradon-Eck, Aline & Sakoyan, Juliette & Desclaux, Alice & Mancini, Julien & Genre, Dominique & Julian-Reynier, Claire, 2012. ""They should take time": Disclosure of clinical trial results as part of a social relationship," Social Science & Medicine, Elsevier, vol. 75(5), pages 873-882.
    4. Smith, Brett & Sparkes, Andrew C., 2005. "Men, sport, spinal cord injury, and narratives of hope," Social Science & Medicine, Elsevier, vol. 61(5), pages 1095-1105, September.
    5. 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.
    6. Vindrola-Padros, Cecilia & Brage, Eugenia, 2017. "What is not, but might be: The disnarrated in parents' stories of their child's cancer treatment," Social Science & Medicine, Elsevier, vol. 193(C), pages 16-22.
    7. Sterponi, Laura & Zucchermaglio, Cristina & Fatigante, Marilena & Alby, Francesca, 2019. "Structuring times and activities in the oncology visit," Social Science & Medicine, Elsevier, vol. 228(C), pages 211-222.

    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:307:y:2022:i:c:s0277953622004907. 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.