西班牙裔和拉丁裔痴呆症护理者的日常经历研究：一项完全远程的日常日记观察队列研究方案

The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study.

作者信息

Mildrum Chana Sofía, Álvarez Lorelí, Poe Abigail, Bibriescas Natashia, Wang Danny Hai, DiFiglia Stephanie, Azuero Andrés, Crowe Michael, Puga Frank

机构信息

Department of Psychology, University of Alabama at Birmingham, Birmingham, AL, United States.

Department of Acute, Chronic and Continuing Care, School of Nursing, University of Alabama at Birmingham, Birmingham, AL, United States.

出版信息

JMIR Res Protoc. 2024 Jun 13;13:e55216. doi: 10.2196/55216.

DOI:10.2196/55216

PMID:38869929

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11211706/

Abstract

BACKGROUND

The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers.

OBJECTIVE

The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for "Nuestros Días" (Spanish for "our days"), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers.

METHODS

The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables.

RESULTS

Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal.

CONCLUSIONS

Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55216.

摘要

背景

西班牙裔和拉丁裔社区受阿尔茨海默病及相关痴呆症（ADRDs）的影响尤为严重。在美国，约有850万ADRDs患者的照料者为西班牙裔和拉丁裔，与照料相关的压力和负担使照料者面临心理健康状况不佳、孤独和社会隔离的风险增加。迄今为止，关于西班牙裔和拉丁裔照料者日常压力经历的了解有限。鉴于这一知识空白，研究西班牙裔和拉丁裔ADRDs照料者的个人、文化和背景因素如何随时间影响日常压力、心理健康和恢复力至关重要。

目的

本方案报告的目的是介绍“Nuestros Días”（西班牙语，意为“我们的日子”）这一完全远程的日常日记（DD）观察性队列研究的基本原理、方法、计划的分析策略、迄今完成的进展以及未来研究结果的意义，该研究旨在考察西班牙裔和拉丁裔ADRDs照料者的日常经历。

方法

该研究将招募多达500名ADRDs患者的西班牙裔和拉丁裔照料者。参与者将在3个时间点（入组时、6个月时和12个月时）完成评估背景、个体层面和文化因素的测量。每个时间点之后将进行21天的DD调查，以报告日常压力、压力调节因素和心理健康变量。

结果

数据收集于2023年3月开始，预计于2026年12月结束。截至2024年3月，我们已在“Nuestros Días”研究中招募了60名照料者，其中78.9%（n = 15）为说西班牙语者。DD调查的当前完成率为79.4%，平均在21份调查中完成约18份。我们预计未来每月招募10至15名参与者以实现招募目标。