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患者及家属对轻度认知障碍诊断评估的主观体验

Patients' and Family Members' Subjective Experiences of a Diagnostic Evaluation of Mild Cognitive Impairment.

作者信息

Morris Jonna L, Hu Lu, Hunsaker Amanda, Liptak Amy, Seaman Jennifer Burgher, Lingler Jennifer H

机构信息

Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA.

Department of Population Health, NYU School of Medicine, New York, NY, USA.

出版信息

J Patient Exp. 2020 Feb;7(1):124-131. doi: 10.1177/2374373518818204. Epub 2018 Dec 16.

Abstract

BACKGROUND

People with a diagnosis of mild cognitive impairment (MCI) often struggle with uncertainty and fear when learning of and coping with their diagnosis. However, little is known about their experiences and perspectives, and those of their care partners, when seeking out and undergoing a diagnostic evaluation for their cognitive symptoms.

METHOD

This study is a secondary analysis of a focus group discussion that was initially conducted to learn the perspectives and experiences of participants and their care partners during a mock disclosure session of brain scan results. Participant's broader views on their experience of completing a cognitive evaluation resulting in an MCI diagnosis were evaluated in this study. Analysis used qualitative content methodology and line-by-line coding which generated categories and themes.

RESULTS

The (1) "presence of a threat" and (2) attempts to "minimize the threat" emerged as overarching themes driving the process of seeking out a diagnostic evaluation for cognitive symptoms. Subthemes that highlight the complexity of the presence of a threat included the "fear of stigma," and the "emotional reactions" related to an MCI diagnosis. Three additional subthemes represented approaches that participants and their care partners used to minimize threat of MCI: "use of language" to minimize the threat; "information sharing and withholding"; and the "use of social support to legitimize personal experiences."

CONCLUSION

These findings add to the literature by elucidating the uncertainty, fears, and coping strategies that accompany a diagnostic evaluation of MCI.

摘要

背景

被诊断为轻度认知障碍(MCI)的人在得知并应对自己的诊断时,常常会陷入不确定性和恐惧之中。然而,对于他们在寻求和接受认知症状诊断评估时的经历、观点以及他们的护理伙伴的经历和观点,我们却知之甚少。

方法

本研究是对一次焦点小组讨论的二次分析,该讨论最初旨在了解参与者及其护理伙伴在脑部扫描结果模拟披露环节中的观点和经历。在本研究中,评估了参与者对完成导致MCI诊断的认知评估经历的更广泛看法。分析采用定性内容分析法和逐行编码,从而生成类别和主题。

结果

(1)“威胁的存在”和(2)“将威胁最小化”的尝试成为推动寻求认知症状诊断评估过程的总体主题。突出威胁存在复杂性的子主题包括“对污名的恐惧”以及与MCI诊断相关的“情绪反应”。另外三个子主题代表了参与者及其护理伙伴用来将MCI威胁最小化的方法:“使用语言”来最小化威胁;“信息共享与隐瞒”;以及“利用社会支持使个人经历合法化”。

结论

这些发现通过阐明MCI诊断评估所伴随的不确定性、恐惧和应对策略,丰富了相关文献。

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