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在没有路线图的情况下前行:早期阿尔茨海默病患者照料者与医疗团队面临的挑战

Navigating Without a Roadmap: Challenges of Early Alzheimer's Caregivers With Their Health Care Team.

作者信息

Zubatsky Max, Aragon-Prada Mayra, Muse Fatima, Rainey Peter, Martin Robert

机构信息

Saint Louis University, St. Louis, Missouri, USA.

The Pennsylvania State University, State College, Pennsylvania, USA.

出版信息

Glob Qual Nurs Res. 2016 Oct 17;3:2333393616673465. doi: 10.1177/2333393616673465. eCollection 2016 Jan-Dec.

Abstract

Caregivers of individuals with Alzheimer's disease are willing to make large sacrifices to attend to the everyday demands of their loved one's health. Many still lack the necessary skills, information, and resources from medical professionals needed to fully execute this role. The aim of this study is to explore the challenges that first-time Alzheimer's caregivers encountered with members of their health care team around a loved one's diagnosis. Four focus groups ( = 13) were conducted in a primary care clinic and academic setting, using a semi-structured interview format facilitated by a mental health professional. The authors used thematic analysis to generate three overarching themes regarding lack of information given about the diagnosis, complications with medication management, and level of confidence in their medical team. Medical professionals should consider educating Alzheimer's disease caregivers during the initial stage of this role, providing greater continuity of care with the family throughout treatment.

摘要

阿尔茨海默病患者的照料者愿意做出巨大牺牲,以应对亲人健康方面的日常需求。许多人仍然缺乏医疗专业人员提供的必要技能、信息和资源,无法充分履行这一职责。本研究的目的是探讨首次成为阿尔茨海默病照料者的人在亲人确诊时,与医疗团队成员所面临的挑战。在一家初级保健诊所和学术环境中进行了四个焦点小组(n = 13),采用由心理健康专业人员协助的半结构化访谈形式。作者使用主题分析得出了三个总体主题,分别是关于诊断信息缺乏、药物管理并发症以及对医疗团队的信心水平。医疗专业人员应考虑在这一角色的初始阶段对阿尔茨海默病照料者进行教育,在整个治疗过程中为家庭提供更大的护理连续性。

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