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

LaGaryion Carson, Judith McFarlane
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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.

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非裔美国人照顾者照顾阿尔茨海默氏症患者家人的经历:描述性现象学研究。
本研究旨在描述非裔美国人家庭照顾者如何照顾阿尔茨海默病患者。本研究采用描述性现象学方法进行定性研究设计,以了解非裔美国人家庭照顾者的生活经历。在 2023 年 1 月至 6 月期间,通过电话或视频会议进行了 15 次半结构化深入访谈,以解决研究问题。在斯旺森的关怀理论指导下,采用科莱齐的方法对从访谈录音中逐字转录的数据进行了分析。数据中出现了八个主题:(a) 重新为人父母,(b) 自我牺牲,(c) 照顾照顾者,(d) 与上帝联系,(e) 照顾的责任,(f) 受困,(g) 精疲力竭,(h) 失去自我。研究结果表明,老年痴呆症患者的非裔美国家庭照顾者在照顾患者的过程中经常会感到身心和情感疲惫。因此,我们亟需更多的支持、健康宣传和制定适当的干预措施,以减轻他们所经历的挑战,从而使他们能够继续扮演照顾者的角色,并得到一些喘息的机会。
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