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[从帕金森病患者及其亲属的角度看帕金森病的生活]

[Living with Parkinson's disease from the perspective of parkinsonians and their relatives].

作者信息

Navarro-Peternella Fabiana Magalhães, Marcon Sonia Silva

机构信息

Unidade de Ensino Superior Ingá (UNINGA), Maringá, Paraná, Brasil.

出版信息

Rev Gaucha Enferm. 2010 Sep;31(3):415-22. doi: 10.1590/s1983-14472010000300002.

Abstract

The objective of the study is to investigate what it is like for the patients and relatives to live with Parkinson's disease This was a qualitative descriptive study, developed with ten individuals with Parkinson's disease and their relatives, summing up twenty informers, through semistructured interviews. Through discourse analysis, we verified that in spite of the difficulties, many patients show acceptance or conformity regarding to the limitations imposed by the disease, while others still experience anger and hope for a cure. The greatest changes demonstrated by patients and family members regard to the question of dependence and loss of autonomy for work, daily life and leisure activities, which impact on the entire family dynamic. This way, small interventions could contribute to a better coexistence with the disease.

摘要

该研究的目的是调查帕金森病患者及其亲属的生活状况。这是一项定性描述性研究,通过半结构化访谈,对10名帕金森病患者及其亲属进行了研究,共计20名被调查者。通过话语分析,我们发现尽管存在困难,但许多患者对疾病所带来的限制表现出接受或顺从,而另一些患者仍感到愤怒并希望治愈。患者和家庭成员在工作、日常生活和休闲活动中的依赖和自主权丧失问题上表现出最大的变化,这对整个家庭动态产生了影响。因此,一些小的干预措施可能有助于更好地与疾病共存。

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