Pickett Andrew C, Valdez Danny, White Lillian A, Loganathar Priya, Linden Anna, Boutilier Justin J, Caldwell Clover, Elliott Christian, Zuraw Matthew, Werner Nicole E
Department of Health & Wellness Design, School of Public Health- Bloomington, Indiana University, Bloomington, IN, United States.
Department of Applied Health Science, School of Public Health- Bloomington, Indiana University, Bloomington, IN, United States.
JMIR Aging. 2024 Dec 24;7:e67992. doi: 10.2196/67992.
As Alzheimer disease (AD) and AD-related dementias (ADRD) progress, individuals increasingly require assistance from unpaid, informal caregivers to support them in activities of daily living. These caregivers may experience high levels of financial, mental, and physical strain associated with providing care. CareVirtue is a web-based tool created to connect and support multiple individuals across a care network to coordinate care activities and share important information, thereby reducing care burden.
This study aims to use a computational informatics approach to thematically analyze open text written by AD/ADRD caregivers in the CareVirtue platform. We then explore relationships between identified themes and use patterns.
We analyzed journal posts (n=1555 posts; 170,212 words) generated by 51 unique users of the CareVirtue platform. Latent themes were identified using a neural network approach to topic modeling. We calculated a sentiment score for each post using the Valence Aware Dictionary and Sentiment Reasoner. We then examined relationships between identified topics; semantic sentiment; and use-related data, including post word count and self-reported mood.
We identified 5 primary topics in users' journal posts, including descriptions of specific events, professional and medical care, routine daily activities, nighttime symptoms, and bathroom/toileting issues. This 5-topic model demonstrated adequate fit to the data, having the highest coherence score (0.41) among those tested. We observed group differences across these topics in both word count and semantic sentiment. Further, posts made in the evening were both longer and more semantically positive than other times of the day.
Users of the CareVirtue platform journaled about a variety of different topics, including generalized experiences and specific behavioral symptomology of AD/ADRD, suggesting a desire to record and share broadly across the care network. Posts were the most positive in the early evening when the tool was used habitually, rather than when writing about acute events or symptomology. We discuss the value of embedding informatics-based tools into digital interventions to facilitate real-time content delivery.
随着阿尔茨海默病（AD）及与AD相关的痴呆症（ADRD）病情进展，患者越来越需要来自无偿非正式照护者的帮助，以支持他们的日常生活活动。这些照护者在提供照护过程中可能会经历高水平的经济、心理和身体压力。CareVirtue是一款基于网络的工具，旨在连接和支持照护网络中的多个个体，以协调照护活动并共享重要信息，从而减轻照护负担。
本研究旨在使用计算信息学方法，对CareVirtue平台上AD/ADRD照护者撰写的开放文本进行主题分析。然后，我们探索已识别主题与使用模式之间的关系。
我们分析了CareVirtue平台51位独特用户生成的日志帖子（n = 1555条帖子；170,212个单词）。使用神经网络主题建模方法识别潜在主题。我们使用情感感知词典和情感推理器为每条帖子计算情感得分。然后，我们检查已识别主题、语义情感以及与使用相关的数据（包括帖子字数和自我报告的情绪）之间的关系。
我们在用户的日志帖子中识别出5个主要主题，包括特定事件描述、专业和医疗照护、日常常规活动、夜间症状以及浴室/如厕问题。这个5主题模型对数据显示出足够的拟合度，在测试的模型中具有最高的连贯得分（0.41）。我们观察到这些主题在字数和语义情感方面存在组间差异。此外，晚上发布的帖子比一天中的其他时间更长且语义更积极。
CareVirtue平台的用户记录了各种不同主题，包括AD/ADRD的一般经历和特定行为症状，这表明他们希望在照护网络中广泛记录和分享。当习惯使用该工具时，帖子在傍晚时最积极，而不是在撰写急性事件或症状时。我们讨论了将基于信息学的工具嵌入数字干预措施以促进实时内容传递 的价值。
