Hermanns Melinda
(Assistant Professor), College of Nursing, The University of Texas at Tyler, Tyler, Texas.
J Am Assoc Nurse Pract. 2013 Oct;25(10):563-566. doi: 10.1111/1745-7599.12008. Epub 2013 Feb 19.
To discuss the visible and invisible stigma shared by seven men and seven women with Parkinson's disease (PD), a chronic, progressive, neurodegenerative disorder characterized by overt physical and covert psychological manifestations.
An ethnographic approach using interview data, participant observations, and fieldwork was used. Field data were generated from a 2-year exposure to two PD support groups in east Texas. The question "what does it mean to you to have Parkinson's disease"? illuminated the experience of everyday life and the existential meaning of what it means to live with this disease.
The invisible stigma was that of a changing self, a self with PD, a form of disability, which attested to the stigma and mounting isolation. Feelings of isolation were exacerbated by both the stigmatization associated with being different, coupled with the realization that life would never be the same. Facial masking was identified as one of the visible features that were commonly reported by all participants.
Healthcare professionals can be more attuned to the visible and invisible manifestations of PD that are associated with stigma through the incorporation of a holistic assessment to identify perceived stigma in persons living with the disease.
探讨7名男性和7名女性帕金森病（PD）患者所共有的显性和隐性耻辱感，帕金森病是一种慢性、进行性神经退行性疾病，具有明显的身体表现和隐蔽的心理表现。
采用人种志方法，运用访谈数据、参与观察和实地调查。实地数据来自于在得克萨斯州东部对两个帕金森病支持小组为期2年的接触。“患帕金森病对你意味着什么？”这个问题揭示了日常生活经历以及与这种疾病共存的生存意义。
隐性耻辱感来自于自我的改变，即患有帕金森病的自我，这是一种残疾形式，证明了耻辱感和日益增加的孤立感。因与众不同而产生的耻辱感，再加上意识到生活将永远不同，使得孤立感更加严重。面部表情掩饰被确定为所有参与者普遍报告的显性特征之一。
医疗保健专业人员可以通过纳入全面评估以识别帕金森病患者所感受到的耻辱感，从而更加关注与耻辱感相关的帕金森病的显性和隐性表现。
