Persuasive bodies: Testimonies of deep brain stimulation and Parkinson's on YouTube

Abstract

Contemporary publics actively engage with diverse forms of media when seeking health-related information. The hugely popular digital media platform YouTube has become one means by which people share their experiences of healthcare. In this paper, we examine amateur YouTube videos featuring people receiving Deep Brain Stimulation (DBS) for the treatment of Parkinson's disease. DBS has become a widely implemented treatment, and it is surrounded by high expectations that can create difficulty for clinicians, patients and their families. We examine how DBS, Parkinson's disease, and DBS recipients themselves, are delineated within these YouTube videos. The videos, we demonstrate, contain common compositional and stylistic elements that collectively represent DBS as a technological fix, and which accentuate the autonomy of the DBS recipient. The relational, interpersonal dimensions of chronic illness, and the complex impact of DBS on family dynamics, are elided. We therefore shed light on the means by which high expectations regarding DBS are sustained and circulated, and more generally, we illustrate how potentially powerful representations of medical technologies can emerge from the intersection of social media platforms, afflicted bodies and patient narratives.

A Long Way to Go: Patient Perspectives on Digital Health for Parkinson’s Disease

“…Although helpful to many, we will not focus on these fields, but rather explore more innovative and PD specific digital health solutions. of the procedure are not elaborated on [28]. This can Self-tracking is "a process of deliberately collecting and structuring observations about one's own life" [29] and it can be used by PwP both in collaboration with clinicians and researchers, and on their own, as patient-initiated self-tracking.…”

Perspectives on Deep Brain Stimulation and Its Earlier Use for Parkinson’s Disease: A Qualitative Study of US Patients

“…In a recent study, Gardner et al describe how YouTube has become an important social media platform in which patients create, share and consume health-related content. They illustrate how the representations of DBS in YouTube may have contributed to unrealistic expectations among the public and potential DBS recipients [29]. When offered by their neurologists most of our respondents agreed to DBS, with a minority hesitating and opting to wait.…”

Lay Pharmacovigilance and the Dramatization of Risk: Fluoroquinolone Harm on YouTube

“…As illness performances, they allow the audience to see and hear suffering and sufferers. They feature “persuasive bodies” (Gardner et al 2019). We can look into the eyes of particular sufferers and hear their distinctive voices, pleas, emotions, and sighs.…”

“…This project was deemed “not human subjects’ research” by the University of New Mexico’s Institutional Review Board. Nevertheless, using YouTube vlogs raises a number of ethical questions for which no shared answers exist (Gardner et al 2019; Legewie and Nassauer 2018). The individuals whose public vlogs are included in the sample were not contacted, nor are they anonymized, and direct quotes from vlogs are presented along with their URL links.…”