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慢性病患者复杂多变的时期:超越溃疡性结肠炎患者的疾病轨迹

Complex and dynamic times of being chronically ill: Beyond disease trajectories of patients with ulcerative colitis.

作者信息

Shubin Sergei, Rapport Frances, Seagrove Anne

机构信息

Geography, College of Science, Swansea University, Singleton Park, Swansea, SA2 8PP, UK.

Centre for Healthcare Resilience & Implementation Science, Australian Institute of Health Innovation, Macquarie University, 75 Talavera Road, North Ryde, NSW, 2113, Australia.

出版信息

Soc Sci Med. 2015 Dec;147:105-12. doi: 10.1016/j.socscimed.2015.10.065. Epub 2015 Oct 31.

Abstract

This article contributes to health research literature by problematizing the linear, sequential and intelligible understanding of time in the studies of illness. Drawing on the work of Martin Heidegger, it attempts to overcome the problem of considering the time of illness as either a framework controlling patients' experiences or a mind-dependent feature of their lives. The paper offers a conceptual analysis of the stories of ulcerative colitis patients from a recent clinical trial to present temporalities of illness as both objective and subjective, relational and dynamic. We attend to a combination of temporalities related to the ambiguous unfolding of illness and patients' relationships with such an unpredictable world of changing bodies, medical practices and temporal norms. Furthermore, our analysis reveals openness of times and considers ulcerative colitis patients as constantly evolving beings, with multiple possibilities brought about by illness. The paper highlights co-existence of times and considers patients' lives as incorporating a multiplicity of futures, presents and pasts. It concludes with conceptual observations about the consequences of developing complex approaches to illness in health research, which can better highlight the situatedness of patients and their multi-dimensional temporal foundations.

摘要

本文通过对疾病研究中对时间的线性、顺序性和可理解性理解提出质疑,为健康研究文献做出了贡献。借鉴马丁·海德格尔的著作,它试图克服将疾病时间视为控制患者体验的框架或其生活中依赖于意识的特征这一问题。本文对最近一项临床试验中溃疡性结肠炎患者的故事进行了概念分析,以呈现疾病的时间性既是客观的也是主观的,既是相关的也是动态的。我们关注与疾病的模糊发展以及患者与这个身体不断变化、医疗实践和时间规范不可预测的世界的关系相关的多种时间性。此外,我们的分析揭示了时间的开放性,并将溃疡性结肠炎患者视为不断演变的个体,疾病带来了多种可能性。本文强调了多种时间性的共存,并将患者的生活视为包含多种未来、现在和过去。它最后对健康研究中发展复杂的疾病研究方法的后果进行了概念性观察,这可以更好地突出患者的处境及其多维度的时间基础。

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