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一项关于为帕金森病患者工作的经历以及影响工作场所成功的因素的研究。

A study investigating the experience of working for people with Parkinson's and the factors that influence workplace success.

作者信息

Mullin Rebecca L, Chaudhuri K Ray, Andrews Thomasin C, Martin Anne, Gay Stella, White Claire M

机构信息

a Division of Health and Social Care Research , King's College London , London , UK.

b Department of Neurology , Guys and St. Thomas' NHS Foundation Trust , London , UK.

出版信息

Disabil Rehabil. 2018 Aug;40(17):2032-2039. doi: 10.1080/09638288.2017.1323237. Epub 2017 May 10.

Abstract

PURPOSE

The experience of working for people with Parkinson's disease (PD) is known to vary substantially and affects the length of time in employment after diagnosis. This study aims at exploring the experience of working for people with PD and to create a model detailing the factors that influence their workplace success.

METHOD

A qualitative grounded theoretical approach was used. Seventeen working people with PD were selected for individual interviews which were conducted sequentially. Data were analyzed in an iterative, inductive process of coding to identify common themes and to generate a model that explains the data.

RESULTS

Two core themes that influence workplace success for people with PD were identified. 'Feeling in control of Parkinson's' describes the actions that they make to remain in control. 'Being able to control Parkinson's in the workplace' describes external factors that they believe influence their ability to work successfully.

CONCLUSIONS

The theoretical model demonstrates how a variety of factors interplay to influence workplace success for people with PD. PD is often poorly understood but the ability to explore and devise strategies for oneself and the flexibility to work around a fluctuating daily pattern were regularly identified as strategies that facilitated success. Implications for Rehabilitation The experience of working for people with Parkinson's is variable and is influenced by how in control the person with Parkinson's feels and the strategies they use to manage challenges. There is a need for greater workplace education to enhance employers' understanding of Parkinson's to ensure better support for strategies or reasonable adjustments by employers. People with Parkinson's are able to devise strategies to overcome some of their own specific workplace challenges including through technology but often, they prefer not to use disability aids. Daily fluctuations in Parkinson's symptoms are an important factor influencing workplace success.

摘要

目的

已知为帕金森病(PD)患者工作的经历差异很大,且会影响诊断后在职时间的长短。本研究旨在探索为PD患者工作的经历,并创建一个详细说明影响其职场成功因素的模型。

方法

采用定性扎根理论方法。选取17名在职PD患者进行逐一的个人访谈。数据通过反复的归纳编码过程进行分析,以识别共同主题并生成一个解释数据的模型。

结果

确定了影响PD患者职场成功的两个核心主题。“掌控帕金森病”描述了他们为保持掌控所采取的行动。“在工作场所能够控制帕金森病”描述了他们认为影响其成功工作能力的外部因素。

结论

该理论模型展示了多种因素如何相互作用以影响PD患者的职场成功。人们对PD的了解往往不足,但为自己探索和制定策略的能力以及围绕波动的日常模式灵活工作的能力经常被确定为促进成功的策略。康复启示为PD患者工作的经历各不相同,且受到帕金森病患者的自我掌控感以及他们应对挑战所采用策略的影响。需要加强职场教育,以提高雇主对帕金森病的了解,确保雇主更好地支持相关策略或做出合理调整。帕金森病患者能够制定策略来克服一些自身特定的职场挑战,包括通过技术手段,但他们通常不愿意使用残疾辅助工具。帕金森病症状的日常波动是影响职场成功的一个重要因素。

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