School of Nursing, University of Texas Health Science Center at San Antonio, San Antonio, TX, USA.
Center on Smart and Connected Health Technologies, School of Nursing, University of Texas Health Science Center at San Antonio, San Antonio, TX, USA.
J Alzheimers Dis. 2021;81(4):1673-1684. doi: 10.3233/JAD-210167.
BACKGROUND: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous. OBJECTIVE: The objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers. METHODS: Posts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes. RESULTS: Thematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD. CONCLUSION: Online forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach.
背景:随着人口的快速老龄化,越来越多的家庭开始照顾患有阿尔茨海默病和相关痴呆症(ADRD)的人。非正式照顾者面临的巨大挑战和负担。
目的:本研究旨在:1)从家庭照顾者的角度探讨患有 ADRD 的个体的日常生活,以及家庭照顾者在照顾患有 ADRD 的家庭成员时遇到的挑战;2)努力制定一个全面的模型,以改善对患有 ADRD 的个体及其家庭照顾者的护理。
方法:2019 年 5 月从 ALZConnected 在线护理论坛中提取帖子。在以照顾者、患有 ADRD 的个体和护理背景为重点的三角模型的指导下,两名研究人员独立使用演绎和归纳主题分析方法对 654 条帖子进行了分析。研究人员均同意最终的代码和主题。
结果:主题分析产生了四个主题:患有 ADRD 的个体、照顾者、照顾者和患有 ADRD 的个体之间的动态关系以及护理背景。照顾者讨论最多的话题是为照顾者提供信息和情感支持,以及个体的能力和功能。
结论:在线论坛为照顾者提供了一个有价值的平台,让他们在信息和情感上相互支持,分享护理策略,并应对护理负担。衍生出一个扩展的模型,以支持对照顾者和患有 ADRD 的个体进行全面和动态的护理方法。照顾者论坛数据的独特性质值得使用新的分析方法进一步挖掘数据。
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