Dissertations, Theses, and Capstone Projects

Date of Degree

2013

Document Type

Dissertation

Degree Name

Ph.D.

Program

Psychology

Advisor

Joan Greenbaum

Advisor

Cindi Katz

Committee Members

Jessie Daniels

David Chapin

Michelle Fine

Dagny Steudahl

Subject Categories

Social Psychology | Women's Studies

Keywords

chronic illness, health care, social media

Abstract

Personal narratives about women's everyday lives with chronic illness are mapped onto the landscape of social media through blogging. Social media is facilitating an already-existing shift in patients' roles as they are increasingly enabled and expected to self-educate themselves about their illness, collaborate with providers, self-manage their care, and engage in health activism. The health care industry has seized on the widespread use of social media to bolster rhetoric that the accelerated knowledge development made possible through social media has the potential to revolutionize the practice of medicine. Critics, however, argue that responsibility and activism via digital technologies has become an obligation of patient-hood that reproduces and masks neoliberal disciplinary practices that are embedded in health care. Lost between the divergent viewpoints of industry advocates and academic critics is the voice of patients whose use of social media blurs the boundaries of these ideological distinctions through their lived experience.

Women with chronic illness "practice patient-hood" in part by using social media in the negotiation between the opportunities available to them and expectations placed on them. Blogging can be understood as multiple concurrent practices: empowering, resistant, and disciplinary. As an empowering practice, bloggers seek and find mutual understanding, form social networks, share experience, and create new knowledge. As a resistant practice, bloggers challenge medical authority, negotiate social expectations, and direct new narratives that may help to de-stigmatize serious illness. As an act of participatory patient-hood, blogging reproduces the disciplinary practices characteristic of the neoliberal shift in health care and support services from collective to individual responsibility. Specifically, this study examined blogs written by women with Multiple Sclerosis using a three-part methodology: an ethnographic content analysis and close reading of blogs as life narratives (N=40); a survey of bloggers (n=20) about their blogging activities; and a five-week online discussion forum with bloggers (n=9) about their experiences with blogging about their lives with a chronic illness. In addition, the research envisions the online environment as a material, co-created and mediated space in which bloggers enact these complementary and contradictory practices.

Comments

Digital reproduction from the UMI microform.

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