Literature DB >> 16039031

"To me, it's my life": medical communication, trust, and activism in cyberspace.

Patricia Radin1.   

Abstract

This paper studies the conversations and activities of an online support group for breast cancer sufferers and survivors and their supporters. Using communications medium theory and social capital theory, it examines the mundane and profound exchanges, the poignant self-disclosures, the creative expressions of solidarity, and the minor but not-insignificant political actions of people--initially strangers--who come together as a 'virtuous circle,' not only to assist with medical issues but also to meet emotional and even material needs. Sponsored by the Canadian nonprofit organization Breast Cancer Action Nova Scotia (BCANS), this virtual community has logged over a half million messages since 1996. Not every BCANS participant is an activist--many are just trying to grapple with their disease--but some find ways to shatter the professional "information monopoly," and to press for healthcare improvements. The study illustrates the scope, passion, and complexity of peer-to-peer medical communication in a virtual environment that promotes "thick trust". BCANS participants discuss with candor, warmth and even humor such painful topics as death and dying and the crises in intimate relationships brought about by a terminal illness. The sharing of confidences and fears enables participants to pool their 'collective intelligence' about many things, from how to cope with swelling, to how to think about end-of-life issues, to how to improve social policy.

Entities:  

Mesh:

Year:  2005        PMID: 16039031     DOI: 10.1016/j.socscimed.2005.06.022

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  17 in total

Review 1.  Identifying Complementary and Alternative Medicine Usage Information from Internet Resources. A Systematic Review.

Authors:  Vivekanand Sharma; John H Holmes; Indra N Sarkar
Journal:  Methods Inf Med       Date:  2016-06-28       Impact factor: 2.176

2.  Generating a Social Movement Online Community through an Online Discourse: The Case of Myalgic Encephalomyelitis.

Authors:  Olaug S Lian; Jan Grue
Journal:  J Med Humanit       Date:  2017-06

Review 3.  Social media for breast cancer survivors: a literature review.

Authors:  Angela L Falisi; Kara P Wiseman; Anna Gaysynsky; Jennifer K Scheideler; Daniel A Ramin; Wen-Ying Sylvia Chou
Journal:  J Cancer Surviv       Date:  2017-06-10       Impact factor: 4.442

4.  Revision of the fear of cancer recurrence cognitive and emotional model by Lee-Jones et al with women with breast cancer.

Authors:  Christine Maheu; Maude Hébert; Julie Louli; Tian-Ran Yao; Sylvie Lambert; Andrea Cooke; Alexandra Black; Jamie Kyriacou
Journal:  Cancer Rep (Hoboken)       Date:  2019-04-04

5.  In delicate balance: stem cells and spinal cord injury advocacy.

Authors:  Sara Parke; Judy Illes
Journal:  Stem Cell Rev Rep       Date:  2011-09       Impact factor: 5.739

6.  The process of deciding about prophylactic surgery for breast and ovarian cancer: Patient questions, uncertainties, and communication.

Authors:  Robert Klitzman; Wendy Chung
Journal:  Am J Med Genet A       Date:  2010-01       Impact factor: 2.802

7.  Benefits of peer support in online Japanese breast cancer communities: differences between lurkers and posters.

Authors:  Yoko Setoyama; Yoshihiko Yamazaki; Kazuhiro Namayama
Journal:  J Med Internet Res       Date:  2011-12-29       Impact factor: 5.428

8.  Extracting Additional Influences From Physician Profiles With Topic Modeling: Impact on Ratings and Page Views in Online Healthcare Communities.

Authors:  Xiaoling Wei; Yuan-Teng Hsu
Journal:  Front Psychol       Date:  2022-04-01

9.  Intraindividual, Dyadic, and Network Communication in a Digital Health Intervention: Distinguishing Message Exposure from Message Production.

Authors:  Ranran Z Mi; Rachel Kornfield; Dhavan V Shah; Adam Maus; David H Gustafson
Journal:  Health Commun       Date:  2020-11-25

10.  Beyond the therapeutic: A Habermasian view of self-help groups' place in the public sphere.

Authors:  Sarah Chaudhary; Mark Avis; Carol Munn-Giddings
Journal:  Soc Theory Health       Date:  2012-10-10
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