Living with advanced Parkinson's disease: a constant struggle with unpredictability
Living with advanced Parkinson's disease: a constant struggle with unpredictability
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DOI：
10.1111/j.1365-2648.2010.05459.x
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发表时间：
2011-02-01
影响因子：
3.8
通讯作者：
Ostergaard, Karen
中科院分区：
文献类型：
--
作者：
Haahr, Anita;Kirkevold, Marit;Ostergaard, Karen
目的：本文是一份关于深度脑刺激治疗前晚期帕金森病患者生活世界和生活管理方式的探索报告，以及他们对治疗后生活的期望。患有帕金森病意味着生活在持续丧失独立性和自尊以及不可预测的ON/OFF现象的经历中。因此，在疾病的晚期，治疗与脑深部电刺激可能成为relevant.Method。11例患者符合脑深部电刺激治疗前接受了采访。数据收集于2007年，并根据解释学现象学方法的货车梅南进行分析，使用四个存在主义作为分析tools.Findings。生活与先进的帕金森氏病可以被描述为生活和管理不可预测性的经验。这种疾病逐渐占据了主导地位，参与者每天都必须与不可预测性作斗争。与此相关的主题是：身体-设置议程，总是要准时的斗争，生活在依赖和妥协-是一种负担，生活在有限的空间和社会生活的变化。结论帕金森病导致深刻的身体限制。与不可预测的身体一起生活会影响生活的各个方面，护士需要意识到疾病对整个生活世界的影响，以及这可能如何影响治疗的方式。
P>Aim.This paper is a report of an exploration of patients' lifeworld and way of managing life with advanced Parkinson's disease prior to Deep Brain Stimulation and what they expect from life following this treatment.Background.Parkinson's disease is a progressive neurodegenerative disease, which is initially well-treated with L-dopa. Living with Parkinson's disease means living with the experience of continuous loss of independence and self-esteem and unpredictable ON/OFF phenomena. Thus, in the advanced stage of the disease, treatment with Deep Brain Stimulation may become relevant.Method.Eleven patients eligible for Deep Brain Stimulation were interviewed prior to treatment. Data were collected in 2007 and analysed according to the hermeneutic phenomenological methodology of van Manen, using the four existentials as analytic tools.Findings.Living with advanced Parkinson's disease can be described as the experience of living with and managing unpredictability. The disease gradually took over, and participants had to struggle with unpredictability on a daily basis. Themes in relation to this were: The body - setting the agenda, Always a struggle to be on time, Living in dependence and compromise - being a burden, and Living with restrained space and changes in social life.Conclusion.Parkinson's disease leads to profound bodily restrictions. Living with an unpredictable body affects all aspects of life, and nurses need to be aware of the impact the disease has on the entire lifeworld, and how this may affect the way treatment is perceived.