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《残疾歧视法》,对职场中患有渐进性疾病的人来说是必要但并不充分的保障?帕金森病青年患者的经历。

The Disability Discrimination Act, a necessary, but not sufficient safeguard for people with progressive conditions in the workplace? The experiences of younger people with Parkinson's disease.

作者信息

Banks Pauline, Lawrence Maggie

机构信息

Health Quest, School of Health Studies, Bell College, Hamilton, UK.

出版信息

Disabil Rehabil. 2006 Jan 15;28(1):13-24. doi: 10.1080/09638280500165120.

Abstract

PURPOSE

This study explored the impact of Parkinson's disease (PD) on employment from the perspective of affected individuals. Particular attention was paid to factors that may affect the duration of employment after onset/diagnosis.

METHOD

Data were collected in two phases, i) a postal survey (n = 339), and ii) one to one interviews (n = 24).

RESULTS

Four out of five participants reported that PD had made work difficult for them, only 15.3% had worked for more than five years post-diagnosis at the time of the survey. Several participants reported having experienced considerable stress prior to leaving work. Factors that precipitated withdrawal from the labour market included severity of symptoms, lack of support in the workplace, and opportunities for 'early retirement'. Factors associated with maintaining employment included age at diagnosis, support received from employers, and manipulation of drug therapy.

CONCLUSIONS

It can be very difficult for people with PD to continue in paid employment for more than a few years post diagnosis. The relatively low level of contact between people with PD who were in employment and health professionals suggest that employment retention is not seen as major role for this group of professionals. There is a need for positive action to support people with progressive conditions in the workplace.

摘要

目的

本研究从患者个体角度探讨帕金森病(PD)对就业的影响。特别关注了可能影响发病/确诊后就业时长的因素。

方法

数据收集分两个阶段进行,i)邮寄问卷调查(n = 339),ii)一对一访谈(n = 24)。

结果

五分之四的参与者表示帕金森病使他们工作困难,在调查时,只有15.3%的参与者在确诊后工作了五年以上。几位参与者表示在离职前经历了相当大的压力。促使退出劳动力市场的因素包括症状严重程度、工作场所缺乏支持以及“提前退休”机会。与维持就业相关的因素包括确诊年龄、雇主提供的支持以及药物治疗的调整。

结论

帕金森病患者在确诊后继续从事有薪工作数年可能非常困难。在职帕金森病患者与健康专业人员之间的接触水平相对较低,这表明就业保留对这组专业人员来说并非主要职责。需要采取积极行动来支持职场中患有进行性疾病的人。

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