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慢性病的主观体验:对溃疡性结肠炎管理的一些启示

The subjective experience of chronic disease: some implications for the management of ulcerative colitis.

作者信息

Kelly M P

出版信息

J Chronic Dis. 1986;39(8):653-66. doi: 10.1016/0021-9681(86)90190-6.

Abstract

The paper first describes the subjective experience of chronic ulcerative colitis. Using autobiographical data some of the intra- and inter-personal strategies for coping with the disease are outlined. Then, selective socio-medical issues arising from the data--the relationships between physical and social events, denial and normalisation of illness, doctor-patient communications, and lay knowledge and perceptions--are elaborated. Finally suggestions for the social management of patients with ulcerative colitis are drawn out. It is argued that the importance of the subjective experience, as well as the physical process of the disease must be confronted by the physician, that the counseling of colitics should aim, where possible, to encourage normal social development, that the possibilities of the life-threatening nature of the disease and the type of curative surgery should be addressed at an early stage by the patient and their family and that patients should be allowed to do "grief-work" to help them to come to terms with the disease and its likely outcomes.

摘要

本文首先描述了慢性溃疡性结肠炎的主观体验。利用自传性资料概述了一些应对该疾病的人际内和人际间策略。然后,阐述了从这些资料中产生的一些选择性社会医学问题——身体与社会事件之间的关系、疾病的否认与正常化、医患沟通以及外行知识与认知。最后,得出了对溃疡性结肠炎患者进行社会管理的建议。文章认为,医生必须面对主观体验以及疾病的身体过程的重要性,对结肠炎患者的咨询应尽可能旨在鼓励正常的社会发展,疾病危及生命的性质和根治性手术的类型等可能性应在早期由患者及其家人探讨,并且应该允许患者进行“悲伤处理”以帮助他们接受疾病及其可能的后果。

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