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Qual Health Res. 2018 Jan;28(1):87-97. doi: 10.1177/1049732317732963. Epub 2017 Oct 11.
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Family caregiving in advanced chronic organ failure.晚期慢性器官衰竭患者的家庭护理。
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“我觉得自己完全无法掌控生活……一切都让我应接不暇。”:通过立场标记分析护理人员的不确定性和控制感。

"I Don't Feel Like I Have Any Control of My Life at All . . . Everything Overwhelms Me. Everything": Analyzing Caregiver Uncertainty and Control Through Stance Marking.

机构信息

Penn State, University Park, Pennsylvania, USA.

出版信息

Qual Health Res. 2019 Oct;29(12):1794-1809. doi: 10.1177/1049732319840283. Epub 2019 Apr 23.

DOI:10.1177/1049732319840283
PMID:31014185
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7815210/
Abstract

Informal caregivers immersed in the daily care of loved ones at end-of-life stages face such challenges as medical and household issues, worries, doubts, and uncertainties. Using a macro-mezzo-micro approach to discourse, we analyzed parent study interview data involving 46 caregivers facing end-of-life realities. At the mezzo level, we examined caregivers' expressed perceptions of control. We then more finely analyzed discursive expressions of pertaining to caregivers' emotions and feelings, and pertaining to their knowledge and belief states. Theories of uncertainty and control inextricably interweave areas of cognition, affect, and behavior regarding how caregivers perceive their realities and how they engage in or disengage from coping mechanisms in the process. The findings in this three-tiered approach make salient specific discursive patterns gleaned from systematic and fastidious attention to caregivers' own ways of using language that methodically afford deeper entry into the emotional, physical, and cognitive challenges in their everyday lived experiences.

摘要

非专业照护者在临终关怀阶段全身心投入到亲人的日常照护中,面临着医疗和家庭问题、担忧、疑虑和不确定性等挑战。本研究采用宏观-中观-微观的话语分析方法,对涉及 46 名面临临终现实的照护者的父母研究访谈数据进行了分析。在中观层面,我们考察了照护者对控制的表达感知。然后,我们更细致地分析了与照护者的情绪和感受有关的 和与他们的知识和信念状态有关的 。关于照护者如何感知现实以及他们如何在应对机制中参与或脱离应对机制,不确定性和控制理论交织着认知、情感和行为领域。在这种三层方法的研究结果中,突出了从系统和细致地关注照护者使用语言的方式中获得的具体话语模式,这些模式为深入了解他们日常生活中的情感、身体和认知挑战提供了途径。