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2 型 Usher 综合征致聋盲患者的工作与健康体验

The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2.

机构信息

Faculty of Medicine and Health, Örebro University , Örebro, Sweden.

The Swedish Institute for Disability Research, Örebro University , Örebro, Sweden.

出版信息

Int J Qual Stud Health Well-being. 2020 Dec;15(1):1846671. doi: 10.1080/17482631.2020.1846671.

Abstract

: This study aimed to explore lived experiences with working life from the perspective of people with deafblindness due to Usher syndrome type 2 (USH2). : A limited number of studies have explored working life of people with Usher syndrome. One study of individuals with USH2 showed that work active reported significantly better psychological health compared to non-working individuals. : Seven participants aged 38-50 years with USH2 participated in interviews analysed by interpretative phenomenological analysis. : The analyses yielded four themes showing that work is a and a . It is also associated with and . : Based on the psychology of work model we have demonstrated that work is associated with social connectedness, self-determination and a source of improved health outcomes. There are however also potential health hazards in people with USH2, indicating a need for balance between individual needs and resources, and an adapted environment, for maintaining or regaining health for actively working people with USH2.

摘要

: 本研究旨在从 2 型乌谢尔综合征(USH2)致聋盲患者的角度探索其工作生活体验。 : 已有少数研究探讨了乌谢尔综合征患者的工作生活。一项对 USH2 患者的研究表明,与非工作者相比,积极工作者的心理健康状况显著更好。 : 7 名年龄在 38-50 岁的 USH2 患者参与了访谈,采用解释性现象学分析进行分析。 : 分析结果得出四个主题,表明工作既是一种 也是一种 。它还与 和 相关。 : 基于工作心理学模型,我们证明了工作与社会联系、自我决定和改善健康结果的来源有关。然而,对于 USH2 患者也存在潜在的健康危害,这表明需要在个人需求和资源以及适应环境之间取得平衡,以维持或恢复积极工作的 USH2 患者的健康。

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An update on the genetics of usher syndrome.关于尤塞氏综合征遗传学的最新情况。
J Ophthalmol. 2011;2011:417217. doi: 10.1155/2011/417217. Epub 2010 Dec 23.

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