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- All Subjects: Chronically ill
- Creators: Tracy, Sarah J.
Description
The biohacker movement is an important and modern form of activism. This study broadly examines how positive-activist-oriented biohackers emerge, organize, and respond to social crises. Despite growing public awareness, few studies have examined biohacking's influence on prevailing notions of organizing and medicine in-context. Therefore, this study examines biohacking in the context of the 2016 EpiPen price-gouging crisis, and explores how biohackers communicatively attempted to constitute counter-narratives and counter-logics about medical access and price through do-it-yourself (DIY) medical device alternatives. Discourse tracing and critical case study analysis are useful methodological frameworks for mapping the historical discursive and material logics that led to the EpiPen pricing crisis, including the medicalization of allergy, the advancement of drug-device combination technologies, and role of public health policy, and pharmaceutical marketing tactics. Findings suggest two new interpretations for how non-traditional forms of organizing facilitate new modes of resistance in times of institutional crisis. First, the study considers the concept of "pop-up maktivism" to conceptualize activism as a type of connective activity rather than collective organizing. Second, findings illustrate how activities such as participation and co-production can function as meaningful forms of institutional resistance within dominant discourses. This study proposes “mirrored materiality” to describe how biohackers deploy certain dominant logics to contest others. Lastly, implications for contributions to the conceptual frameworks of biopower, sociomateriality, and alternative organizing are discussed.
ContributorsDonovan, Matthew (Author) / Tracy, Sarah J. (Thesis advisor) / Nadesan, Majia H (Committee member) / Kim, Heewon (Committee member) / Halavais, Alexander (Committee member) / Arizona State University (Publisher)
Created2019
Description
Chronic illness can be a stressful experience that requires coping and support. In the last twenty years, Shared Medical Appointments (SMAs) were developed in U.S. healthcare as a response to the rising rates and challenges of chronic disease management. Due to the infancy of the SMA model, however, little is known or understood about the benefits of group medical care for patients. To date, scholars have not explored or systematically observed the communicative aspects of the SMA model. Communal coping, a theoretical framework that foregrounds group interaction and communication, offers a pragmatic lens for exploring how patients collectively cope with the stressors of chronic illness in the context of SMAs. Using qualitative methods, I conducted participant observation of SMAs at a Veterans Affairs hospital to analyze the communicative, transactional nature of communal coping as it unfolded among heart failure patients, family members, and providers in context. I also conducted interviews with SMA attendees. Analysis is based on 56 hours of fieldwork and 14 hours of interviews. Findings of this dissertation revealed group members who attended heart failure SMAs engaged in communal coping to manage the stressors of chronic illness. Group members moved through four primary phases of the communal coping process: (1) establish a communal coping orientation; (2) discuss shared stressors; (3) engage in cooperative action; and (4) practice communal reflexivity. Findings suggest patients become empowered by group interaction during SMAs as they move through each phase of the communal coping process. This dissertation also highlights various communicative strategies providers' use during SMAs to facilitate communal coping and group interaction. Theoretically, this dissertation expands upon existing knowledge of communal coping by exploring how individuals embody and socially construct the communal coping process. Specifically, this dissertation extends past models of communal coping with the addition of the communal reflexivity phase and through conceptualizing communal coping as a facilitated process of empowerment. Pragmatically, this research also offers insight to the benefits patients derive from attending SMAs, such as reduced feelings of stigma and isolation and improved motivation.
ContributorsHoffman, Trisha K (Author) / Miller, Katherine I (Thesis advisor) / Tracy, Sarah J. (Thesis advisor) / Lederman, Linda C (Committee member) / Dev, Sandesh (Committee member) / Arizona State University (Publisher)
Created2015