Hagren B, Pettersen I M, Severinsson E, Lützén K, Clyne N
Department of Nursing, Karolinska Institutet, Stockholm, Sweden.
J Adv Nurs. 2001 Apr;34(2):196-202. doi: 10.1046/j.1365-2648.2001.01745.x.
The aim of this study was to describe patients' experiences of suffering from end-stage renal disease (ESRD).
The rationale was to investigate how persons find meaning or make sense of their situation and how they experience suffering. The theoretical basis for the study was to view suffering at three levels. The first level was related to sickness and treatment. The second level was related to the care provided and the third level was related to each person's unique life experience and existence.
Data were collected by interviews focusing on questions concerning daily life, needs, and expectations for the future. A qualitative interpretative content analysis was used. Fifteen patients between the ages of 50-86 participated in the study.
Two main themes were identified describing these patients suffering. The first theme, 'the haemodialysis machine as a lifeline' consisted of three subthemes: 'loss of freedom', 'dependence on the caregiver', and 'disrupted marital, family and social life'. The second theme 'alleviation of suffering' consisted of two subthemes: 'gaining a sense of existential optimism' and 'achieving a sense of personal autonomy'.
This study indicated that, in the lives of patients on haemodialysis, the main areas of suffering were related to loss of freedom expressed as dependence on the haemodialysis machine as a lifeline and, the caregivers. This time-consuming and tiring dependence affected marital, family and social life. Alleviation of suffering could be achieved by accepting dependence on the haemodialysis machine and maintaining autonomy by being seen as an individual by the caregivers.
本研究的目的是描述终末期肾病(ESRD)患者的患病经历。
其理论依据是调查人们如何找到自身处境的意义或理解自身处境,以及他们如何体验痛苦。该研究的理论基础是从三个层面看待痛苦。第一个层面与疾病和治疗相关。第二个层面与所提供的护理相关,第三个层面与每个人独特的生活经历和存在相关。
通过访谈收集数据,访谈聚焦于有关日常生活、需求和对未来期望的问题。采用定性解释性内容分析法。15名年龄在50 - 86岁之间的患者参与了该研究。
确定了描述这些患者痛苦的两个主要主题。第一个主题“血液透析机作为生命线”由三个子主题组成:“失去自由”、“依赖照顾者”以及“婚姻、家庭和社会生活受到干扰”。第二个主题“减轻痛苦”由两个子主题组成:“获得存在主义乐观感”和“实现个人自主感”。
本研究表明,在血液透析患者的生活中,痛苦的主要方面与失去自由有关,表现为依赖作为生命线的血液透析机以及照顾者。这种耗时且疲惫的依赖影响了婚姻、家庭和社会生活。通过接受对血液透析机的依赖并通过被照顾者视为个体来保持自主性,可以减轻痛苦。