University of Haifa, Haifa, Israel.
Qual Health Res. 2010 Feb;20(2):159-69. doi: 10.1177/1049732309358330.
In this study we explored the subjective experience of family stigma as reported by children of persons with Alzheimer's disease (AD). Our data indicated that family stigma in the area of AD was primarily experienced in three dimensions: caregivers' stigma, lay public's stigma, and structural stigma. We found that in all these dimensions family stigma follows a process characterized by three core elements: cognitive attributions, emotional reactions, and behavioral responses. Findings of this study highlight the profound stigma confronting caregivers of persons with AD. What emerges is a poignant picture of adult children living with stigmatic beliefs while providing care for their parents with AD. We suggest that swift steps be taken to deal with these stigmatic beliefs. Mainly, structural discrimination must end if all citizens are to receive truly fair and equitable health care services and benefits.
在这项研究中,我们探讨了阿尔茨海默病(AD)患者子女报告的家庭耻辱感的主观体验。我们的数据表明,AD 领域的家庭耻辱感主要体现在三个方面:照顾者耻辱感、公众耻辱感和结构性耻辱感。我们发现,在所有这些方面,家庭耻辱感都遵循着一个由三个核心要素组成的过程:认知归因、情绪反应和行为反应。这项研究的结果凸显了阿尔茨海默病患者照顾者所面临的深刻耻辱感。出现的情况是,成年子女在带着耻辱感的信念生活的同时,为患有 AD 的父母提供护理。我们建议迅速采取措施应对这些耻辱感信念。主要的是,如果所有公民都要获得真正公平和公正的医疗保健服务和福利,就必须结束结构性歧视。