Department of Nursing Science, School of Public Health, Aarhus University, Denmark.
J Adv Nurs. 2011 Feb;67(2):408-17. doi: 10.1111/j.1365-2648.2010.05459.x. Epub 2010 Oct 15.
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.
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.
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.
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.
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.
本文报告了一项探索，即在深部脑刺激治疗帕金森病之前，患者的生活世界以及他们在这种治疗后管理生活的方式，以及他们对生活的期望。
帕金森病是一种进行性神经退行性疾病，最初用左旋多巴治疗效果良好。患有帕金森病意味着要经历持续丧失独立性和自尊心，以及不可预测的开/关现象。因此，在疾病的晚期，深部脑刺激治疗可能变得相关。
11 名符合深部脑刺激治疗条件的患者在治疗前接受了采访。数据于 2007 年收集，并根据范马南的解释现象学方法进行分析，使用四个存在作为分析工具。
患有晚期帕金森病可以描述为经历不可预测性和管理不可预测性。疾病逐渐占据主导地位，患者每天都必须与不可预测性作斗争。与之相关的主题有：身体——设定议程、总是争分夺秒、依赖和妥协生活——成为负担，以及生活在受限的空间和社会生活的变化中。
帕金森病导致身体严重受限。患有不可预测的身体会影响生活的方方面面，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对治疗的看法。
