Abstract

Background:

A better understanding of the subjective experience of living with Parkinson’s disease (PD) and the factors that influence this experience can be used to improve wellbeing of people with PD (PwP).

Objective:

To gain more insight in the subjective experience of PD from the PwP’s perspective, and the factors that contribute to this experience.

Methods:

In this qualitative review, we performed a systematic search of qualitative studies discussing the subjective experience of PD and extracted reported themes (first order themes). Using a meta-ethnographic approach, we categorized the first order themes into second order themes, and created a third order construct: a holistic model of the subjective experience of living with PD.

Results:

We included 20 studies with a total sample of 279 PwP. Data-extraction yielded 227 first order themes, which were categorized into the second order themes: 1) Awareness, 2) Disruption, 3) Adjustment, 4) The external environment, and 5) The changing self. With these themes, we developed the “model of dialectic change” which conceptualizes life with PD as a transformative journey, wherein PwP employ strategies to stabilize their changeable relationship with their external environment, while simultaneously redefining their self-concept.

Conclusion:

Our findings indicate that not only the symptoms of PD, but also the manner in which these cause disruptions in the PwP’s interaction with their personal environment and self-concept, determine the subjective experience of PD and

quality of life. Some PwP experience problems with adjusting, resulting in psychological distress. This calls for a holistic, multidisciplinary and participatory approach of PD.

中文翻译：

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帕金森病患者的主观体验：定性文学的元民族志

摘要

背景：

更好地了解帕金森病 (PD) 患者的主观体验以及影响这种体验的因素可用于改善 PD (PwP) 患者的幸福感。

客观的：

从 PwP 的角度更深入地了解 PD 的主观体验，以及促成这种体验的因素。

方法：

在这篇定性审查中，我们对讨论 PD 主观体验的定性研究进行了系统搜索，并提取了报告的主题（一阶主题）。使用元人种学方法，我们将一阶主题分类为二阶主题，并创建了一个三阶结构：PD 患者主观体验的整体模型。

结果：

我们纳入了 20 项研究，总样本为 279 个 PwP。数据提取产生了 227 个一阶主题，这些主题分为二阶主题：1）意识，2）中断，3）调整，4）外部环境，5）变化的自我。基于这些主题，我们开发了“辩证变化模型”，将 PD 的生活概念化为转型之旅，其中 PwP 采用策略来稳定他们与外部环境的多变关系，同时重新定义他们的自我概念。

结论：

我们的研究结果表明，不仅 PD 的症状，而且这些导致 PwP 与其个人环境和自我概念的互动中断的方式，决定了 PD 的主观体验和

生活质量。一些 PwP 遇到调整问题，导致心理困扰。这需要对 PD 采取整体、多学科和参与性的方法。