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非裔美国护理人员照顾患有阿尔茨海默病家人的经历:一项描述性现象学研究。

Experiences of African American caregivers providing care for family living with Alzheimer's disease: A descriptive phenomenological study.

作者信息

Carson LaGaryion, McFarlane Judith

机构信息

College of Nursing, Texas Woman's University, USA.

出版信息

Dementia (London). 2025 May;24(4):597-610. doi: 10.1177/14713012241272849. Epub 2024 Aug 14.

DOI:10.1177/14713012241272849
PMID:39140792
Abstract

This study aimed to describe how African American family caregivers of people living with Alzheimer's disease manage caregiving. A qualitative study design using a descriptive phenomenological approach was used to understand the lived experiences of African American family caregivers. Fifteen individual semi-structured and in-depth interviews were conducted via telephone or videoconference between January and June 2023 to address the research question. Guided by Swanson's theory of caring, the data transcribed verbatim from the audio-recorded interviews were analyzed using Colaizzi's methodology. Eight themes emerged from the data: (a) Parenting all over again, (b) Self-sacrifice, (c) Caring for the caregiver, (d) Connecting to God, (e) Responsibility to care, (f) Trapped, (g) Beyond exhaustion, and (h) Loss of self. The findings of the study indicate that African American family caregivers of people living with Alzheimer's disease often experience physical, mental, and emotional exhaustion while managing care. Thus, there is a considerable need for greater support, health promotion, and development of appropriate interventions to alleviate the challenges experienced so that they can continue in their caregiving role with some respite.

摘要

本研究旨在描述非裔美籍阿尔茨海默病患者家庭照护者如何进行照护。采用描述性现象学方法的质性研究设计,以了解非裔美籍家庭照护者的生活经历。2023年1月至6月间,通过电话或视频会议进行了15次个人半结构化深度访谈,以解决研究问题。在斯旺森关怀理论的指导下,使用科莱齐的方法对录音访谈逐字转录的数据进行了分析。数据中出现了八个主题:(a) 再次为人父母,(b) 自我牺牲,(c) 照顾照护者,(d) 与上帝建立联系,(e) 照护责任,(f) 陷入困境,(g) 疲惫不堪,(h) 自我丧失。研究结果表明,非裔美籍阿尔茨海默病患者家庭照护者在进行照护时常常经历身体、心理和情感上的疲惫。因此,非常需要更多的支持、健康促进以及制定适当的干预措施来缓解他们所面临的挑战,以便他们能够在获得一些喘息机会的情况下继续履行照护职责。

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