Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, University College London, Charles Bell House, 67-73 Riding House Street, London, W1W 7EJ, United Kingdom.
Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, University College London, Charles Bell House, 67-73 Riding House Street, London, W1W 7EJ, United Kingdom.
Soc Sci Med. 2014 Aug;114:49-56. doi: 10.1016/j.socscimed.2014.05.037. Epub 2014 May 24.
Chronic and life-threatening conditions are widely thought to shatter the lives of those affected. In this article, we examine the accounts of 19 older people diagnosed with late stage chronic kidney disease who declined dialysis. Accounts were collected through in-depth interview in the United Kingdom (March-November, 2010). Drawing on a phenomenological approach, we focus particularly on the embodied and lived experience of the condition and on how participants constructed treatment modalities and approached treatment choice. We look toward contemporary elaborations of the conceptual framework of biographical disruption to illustrate how participants managed to contain the intrusion of illness and maintain continuity in their lives. We argue that three interactive phenomena mitigated the potential for disruption and allowed participants to maintain continuity: (a) the framing of illness as "old age"; (b) the prior experience of serious illness; and (c) the choice of the treatment with the least potential for disruption. We conclude that a diagnosis of chronic illness in late life does not inevitably shatter lives or engender biographical disruption. Instead, people are able to construct continuity owing to complex narrative interpretations of diagnosis, sensation and treatment choices.
人们普遍认为,慢性的、危及生命的疾病会彻底改变患者的生活。本文通过对 19 名英国被诊断为晚期慢性肾病且拒绝透析的老年人的深入访谈,考察了他们的患病经历。本研究采用现象学方法,重点关注疾病的身体体验和生活体验,以及参与者如何构建治疗方式和选择治疗方案。我们借鉴当代对生活轨迹被打断的概念框架的阐述,说明参与者是如何设法控制疾病的影响,保持生活的连续性的。我们认为,有三个相互作用的现象减轻了潜在的干扰,使参与者能够保持生活的连续性:(a)将疾病框定为“老年”;(b)先前经历过严重疾病;(c)选择干扰最小的治疗方法。我们的结论是,老年人被诊断出患有慢性疾病并不一定会彻底改变他们的生活轨迹或造成生活轨迹被打断。相反,由于对诊断、感觉和治疗选择进行了复杂的叙述性解释,人们能够构建出连续性。