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节奏与种族的质性交叉点:黑人房颤患者的生活经历

A qualitative crossroads of rhythm and race: Black patients' experiences living with atrial fibrillation.

作者信息

Mann Harnoor, Johnson Amber E, Ferry Danielle, de Abril Cameron Flor, Wasilewski Julia, Hamm Megan, Magnani Jared W

机构信息

Department of Internal Medicine, UPMC, Pittsburgh, PA, USA.

Division of Cardiology, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.

出版信息

Am Heart J Plus. 2023 Apr;28. doi: 10.1016/j.ahjo.2023.100293. Epub 2023 Mar 29.

Abstract

IMPORTANCE

Race-based disparities in atrial fibrillation (AF) outcomes are well-documented, but few studies have investigated individuals' experiences of living with the condition, particularly among Black individuals.

OBJECTIVE

We aimed to identify common themes and challenges experienced by individuals of Black race with AF.

DESIGN

A tailored, qualitative script was developed to assess the perspectives of participants in focus groups.

SETTING

Virtual focus groups.

PARTICIPANTS

Three focus groups of 4-6 participants (16 participants total) were recruited from the racial/ethnic minority participants in the Mobile Relational Agent to Enhance Atrial Fibrillation Self-care Trial.

MAIN OUTCOMES AND MEASURES

Focus group transcripts were inductively coded to identify common themes.

RESULTS

Nearly all participants self-identified as Black race ( = 15, 93.8 %). Participants were mostly male (62.5 %) with mean age of 67 (range 40-78) years. Three themes were identified. First, participants described physical and mental burdens associated with having AF. Second, participants described AF as being a condition that is difficult to manage. Lastly, participants identified key tenets to support self-management of AF (self-education, community support, and patient-provider relationships).

CONCLUSIONS AND RELEVANCE

Participants reported AF is unpredictable and challenging to manage, and that social and community supports are essential. The social and behavioral themes identified in this qualitative research highlight the need for tailored clinical strategies for AF self-management which incorporate individuals' social contexts.

TRIAL REGISTRATION

National Clinical Trial number 04075994.

摘要

重要性

房颤(AF)结局中基于种族的差异已有充分记录,但很少有研究调查个体患该疾病的生活经历,尤其是在黑人个体中。

目的

我们旨在确定患有房颤的黑人个体所经历的共同主题和挑战。

设计

制定了一个量身定制的定性脚本来评估焦点小组参与者的观点。

背景

虚拟焦点小组。

参与者

从“移动关系代理增强房颤自我护理试验”中的少数族裔参与者中招募了三个焦点小组,每组4 - 6名参与者(共16名参与者)。

主要结局和衡量指标

对焦点小组的文字记录进行归纳编码以确定共同主题。

结果

几乎所有参与者都自我认定为黑人(n = 15,93.8%)。参与者大多为男性(62.5%),平均年龄67岁(范围40 - 78岁)。确定了三个主题。首先,参与者描述了与患有房颤相关的身心负担。其次,参与者将房颤描述为一种难以管理的疾病。最后,参与者确定了支持房颤自我管理的关键原则(自我教育、社区支持和医患关系)。

结论与相关性

参与者报告称房颤难以预测且管理具有挑战性,社会和社区支持至关重要。这项定性研究中确定的社会和行为主题凸显了需要制定针对房颤自我管理的量身定制的临床策略,其中纳入个体的社会背景。

试验注册

国家临床试验编号04075994。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5f1a/10946015/b40a5ab8a688/gr1.jpg

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