School of Social Sciences, Monash University, Melbourne, Australia.
Science in Society, Victoria University of Wellington, New Zealand.
Soc Sci Med. 2019 Feb;222:44-51. doi: 10.1016/j.socscimed.2018.12.036. Epub 2018 Dec 24.
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.
当人们寻求与健康相关的信息时，会积极使用各种形式的媒体。广受欢迎的数字媒体平台 YouTube 已成为人们分享医疗保健经验的一种手段。在本文中，我们研究了一些业余 YouTube 视频，内容涉及接受深部脑刺激 (DBS) 治疗帕金森病的患者。DBS 已成为一种广泛应用的治疗方法，它带来了很高的期望，这给临床医生、患者及其家属带来了困难。我们研究了 DBS、帕金森病以及接受 DBS 的患者本身是如何在这些 YouTube 视频中被描绘的。我们发现，这些视频包含了常见的构成和风格元素，共同将 DBS 描绘成一种技术手段，突出了 DBS 接受者的自主性。慢性疾病的关系性和人际维度，以及 DBS 对家庭动态的复杂影响，都被忽略了。因此，我们揭示了 DBS 的高期望是如何得以维持和传播的，更广泛地说，我们说明了社交媒体平台、受疾病影响的身体和患者叙事是如何产生对医疗技术的潜在有力描述的。
