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新冠疫情对患有阿尔茨海默病及相关痴呆症的拉丁裔家庭的影响:对家庭照顾者和初级保健提供者的定性访谈

Impact of the COVID-19 Pandemic on Latino Families With Alzheimer Disease and Related Dementias: Qualitative Interviews With Family Caregivers and Primary Care Providers.

作者信息

Perales-Puchalt Jaime, Peltzer Jill, Fracachan-Cabrera Monica, Perez G Adriana, Ramírez Mariana, Greiner K Allen, Burns Jeffrey Murray

机构信息

Department of Neurology, University of Kansas Alzheimer's Disease Research Center, Fairway, KS, United States.

Department of Family Medicine, University of Kansas Medical Center, Kansas City, KS, United States.

出版信息

JMIRx Med. 2024 Mar 8;5:e42211. doi: 10.2196/42211.

Abstract

BACKGROUND

Latino individuals experience disparities in the care of Alzheimer disease and related dementias (ADRD) and have disproportionately high COVID-19 infection and death outcomes.

OBJECTIVE

We aimed to gain an in-depth understanding of the impact of the COVID-19 pandemic among Latino families with ADRD in the United States.

METHODS

This was a qualitative study of 21 informal caregivers of Latino individuals with ADRD and 23 primary care providers who serve Latino patients. We recruited participants nationwide using convenience and snowball sampling methods and conducted remote interviews in English and Spanish. We organized the transcripts for qualitative review to identify codes and themes, using a pragmatic approach, a qualitative description methodology, and thematic analysis methods.

RESULTS

Qualitative analysis of transcripts revealed eight themes, including (1) the pandemic influenced mental and emotional health; (2) the pandemic impacted physical domains of health; (3) caregivers and care recipients lost access to engaging activities during the confinement; (4) the pandemic impacted Latino caregivers' working situation; (5) the pandemic impacted health care and community care systems; (6) health care and community care systems took measures to reduce the impact of the pandemic; (7) Latino families experienced barriers to remote communication during the pandemic; and (8) caregiver social support was critical for reducing social isolation and its sequalae.

CONCLUSIONS

Latino families with ADRD experienced similar but also unique impacts compared to those reported in the general population. Unique impacts may result from Latino individuals' underserved status in the United States, commonly held cultural values, and their intersectionality with ADRD-related disability. Family caregiver social support was crucial during this time of adversity. These findings suggest the need for more equitable access, culturally appropriate and trustworthy content and delivery of health care and community services, as well as stronger financial and social supports for family caregivers.

摘要

背景

拉丁裔个体在阿尔茨海默病及相关痴呆症(ADRD)护理方面存在差异,且新冠病毒感染和死亡结果比例过高。

目的

我们旨在深入了解新冠疫情对美国患有ADRD的拉丁裔家庭的影响。

方法

这是一项针对21名患有ADRD的拉丁裔个体的非正式照料者和23名服务于拉丁裔患者的初级保健提供者的定性研究。我们使用便利抽样和滚雪球抽样方法在全国范围内招募参与者,并以英语和西班牙语进行远程访谈。我们采用务实方法、定性描述方法和主题分析方法,对访谈记录进行整理以便进行定性审查,以识别编码和主题。

结果

对访谈记录的定性分析揭示了八个主题,包括:(1)疫情影响了心理和情绪健康;(2)疫情影响了身体健康领域;(3)在居家隔离期间,照料者和被照料者无法参与活动;(4)疫情影响了拉丁裔照料者的工作状况;(5)疫情影响了医疗保健和社区护理系统;(6)医疗保健和社区护理系统采取措施以减少疫情的影响;(7)拉丁裔家庭在疫情期间面临远程沟通障碍;(8)照料者的社会支持对于减少社会隔离及其后果至关重要。

结论

与普通人群相比,患有ADRD的拉丁裔家庭经历了相似但也独特的影响。独特的影响可能源于拉丁裔个体在美国未得到充分服务的状况、普遍持有的文化价值观以及他们与ADRD相关残疾的交叉性。在这段逆境时期,家庭照料者的社会支持至关重要。这些发现表明需要更公平地获得医疗保健和社区服务,提供符合文化背景且可靠的内容和服务,以及为家庭照料者提供更强有力的经济和社会支持。

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2021 Alzheimer's disease facts and figures.2021 年阿尔茨海默病事实和数据。
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