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探索以色列帕金森病患者家庭照顾者的认知和污名化体验。

Exploring the perceptions and stigmatizing experiences of Israeli family caregivers of people with Parkinson's disease.

机构信息

Department of Community Mental Health, University of Haifa, Israel.

Movement Disorders Institute, Sagol Neuroscience Center and Department of Neurology, Sheba Medical Center, Tel-Hashomer, Israel; Department of Neurology, Sheba Medical Center, Tel-Hashomer, Israel; Department of Neurology and Neurosurgery, Sackler Faculty of Medicine, Tel-Aviv University, Israel.

出版信息

J Aging Stud. 2021 Mar;56:100910. doi: 10.1016/j.jaging.2020.100910. Epub 2020 Dec 24.

Abstract

Providing care to people with Parkinson's disease (PD) poses challenges for family carers, including experiencing stigmatic beliefs -i.e., family stigma. However, to the best of our knowledge, there is no empirical study examining the stigmatic experiences of family members of people with PD. This was the aim of the present study. Three focus groups with 22 Israeli spouses of people with PD were conducted. Data were analyzed using theory-led thematic analysis. Overall, the spouses in our study shared mainly experiences of the stigma attached to the illness and/or to their loved ones, and not to themselves as carers. Three major themes emerged: the stereotypes that typify PD, stigmatizing behaviors towards the person with the disease, and structural stigma. Our findings highlight the profound stigma confronting carers of persons with PD, particularly when it comes to structural stigma.

摘要

为帕金森病(PD)患者提供护理给家庭照顾者带来了挑战,包括经历污名化观念,即家庭耻辱感。然而,据我们所知,尚无研究考察 PD 患者家属的污名化体验。这就是本研究的目的。本研究进行了三次有 22 名以色列 PD 患者配偶参加的焦点小组。使用理论导向的主题分析对数据进行了分析。总体而言,我们研究中的配偶主要分享了与疾病和/或他们所爱的人相关的污名化体验,而不是作为照顾者的自我污名化体验。出现了三个主要主题:典型 PD 的刻板印象、针对患病者的污名化行为,以及结构性耻辱感。我们的研究结果强调了 PD 患者照顾者面临的深刻耻辱感,尤其是在结构性耻辱感方面。

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