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根据日常生活活动评估的阿尔茨海默病照料问题:来自 Facebook 支持小组的证据。

Alzheimer Caregiving Problems According to ADLs: Evidence from Facebook Support Groups.

机构信息

Department of Management, University of Hradec Králové, 500 03 Hradec Králové, Czech Republic.

Department of Economy, University of Hradec Králové, 500 03 Hradec Králové, Czech Republic.

出版信息

Int J Environ Res Public Health. 2022 May 25;19(11):6423. doi: 10.3390/ijerph19116423.

Abstract

Social media are a societal phenomenon today, including the oldest generation, yet they are seldom used in current health research to identify the needs of persons with Alzheimer's disease (PADs) and their carers. There is an even bigger research gap in the analysis of caregivers' communication in online support groups and its classification according to activities of daily living (ADLs). For this, the goal of this study is to identify real-life practices of informal caregivers who care for PADs based on the analysis of their communication in Facebook groups. A sample of 1603 contributions was obtained from support groups by keyword search, manual coding, and verification; thus, the contributions in the sample are relevant for the individual basic ADLs of PADs. Next, five main conversation topics were identified for each ADL. This was done using the topic extractor based on simple parallel threaded implementation of LDA with a sparse sampling scheme and data structure. The qualitative dimension of research identified discussion topics as well as specific caregiver behavior patterns for each ADL. The quantitative dimension determining the level of engagement of group members in individual ADLs was also measured. The highest engagement was found in activities of feeding and drinking, followed by bathing. In contrast, the activities of dressing, continence, and toileting attract the lowest interest. Moreover, the causal links between the topics discussed within the areas of ADLs were identified. The acquired knowledge can help further research focus on the most problematic areas relevant for people with AD in order to increase their quality of life and at the same time reduce the caregiver burden. The study expands the information of the demands posed by the individual caregiver activities, specifically in the context of activity-based costing or time-based activity costing.

摘要

社交媒体是当今的一种社会现象,包括最年长的一代,但它们在当前的健康研究中很少被用于确定阿尔茨海默病患者(PADs)及其照顾者的需求。在分析在线支持小组中照顾者的沟通以及根据日常生活活动(ADLs)对其进行分类方面,研究差距更大。为此,本研究的目的是根据他们在 Facebook 群组中的沟通分析,确定照顾 PADs 的非正式照顾者的真实实践。通过关键字搜索、手动编码和验证,从支持小组中获得了 1603 条贡献的样本;因此,样本中的贡献与 PADs 的个别基本 ADLs 相关。接下来,为每个 ADL 确定了五个主要的对话主题。这是使用基于简单并行线程的 LDA 主题提取器、稀疏采样方案和数据结构来完成的。研究的定性维度确定了讨论主题以及每个 ADL 的特定照顾者行为模式。还测量了确定小组成员在个别 ADLs 中参与程度的定量维度。在进食和饮水活动中发现了最高的参与度,其次是洗澡。相比之下,穿衣、节制和如厕活动的吸引力最低。此外,还确定了在 ADLs 领域内讨论的主题之间的因果关系。获得的知识可以帮助进一步研究专注于与 AD 患者最相关的最具问题的领域,以提高他们的生活质量,同时减轻照顾者的负担。该研究扩展了个别照顾者活动提出的需求的信息,特别是在基于活动的成本核算或基于时间的活动成本核算的背景下。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b411/9180182/37d1988dc088/ijerph-19-06423-g001.jpg

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