Dupont Charlèss, Smets Tinne, Potts Courtney, Monnet Fanny, Pivodic Lara, De Vleminck Aline, Van Audenhove Chantal, Mulvenna Maurice, Van den Block Lieve
End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), Laarbeeklaan 103, Brussels, 1090, Belgium, 32 484433257.
Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
JMIR Aging. 2025 Feb 11;8:e60652. doi: 10.2196/60652.
Web-based tools have gained popularity to inform and empower individuals in advance care planning. We have developed an interactive website tailored to the unique needs of people with dementia and their families to support advance care planning. This website aims to break away from the rigid pathways shown in other tools that support advance care planning, in which advance care planning is shown as a linear process from information to reflection, communication, and documentation.
This study aimed to assess the website's usage by people with dementia and their family caregivers, identify distinct user engagement patterns, and visualize how users navigated the website.
We analyzed the website's log data obtained from an 8-week evaluation study of the site. Interactions with the website were collected in log data files and included visited web pages or clicked-on hyperlinks. Distinct user engagement patterns were identified using K-means clustering process mining, a technique that extracts insights from log data to model and visualize workflows, was applied to visualize user pathways through the website.
A total of 52 participants, 21 individuals with dementia and their family caregivers as dyads and 10 family caregivers were included in the study. Throughout the 8-week study, users spent an average of 35.3 (SD 82.9) minutes over 5.5 (SD 3.4) unique days on the website. Family caregivers mostly used the website (alone or with a person with dementia) throughout the 8-week study. Only 3 people with dementia used it on their own. In total, 3 distinct engagement patterns emerged: low, moderate, and high. Low-engagement participants spent less time on the website during the 8 weeks, following a linear path from information to communication to documentation. Moderate- and high-engagement users showed more dynamic patterns, frequently navigating between information pages and communication tools to facilitate exploration of aspects related to advance care planning.
The diverse engagement patterns underscore the need for personalized support in advance care planning and challenge the conventional linear advance care planning representations found in other web-based tools.
基于网络的工具在帮助个人进行预先护理规划并赋予其自主权方面越来越受欢迎。我们开发了一个交互式网站，该网站针对痴呆症患者及其家人的独特需求进行了定制，以支持预先护理规划。该网站旨在摆脱其他支持预先护理规划的工具所呈现的僵化路径，在这些工具中，预先护理规划被展示为一个从信息获取到思考、沟通和记录的线性过程。
本研究旨在评估痴呆症患者及其家庭护理人员对该网站的使用情况，识别不同的用户参与模式，并直观呈现用户在网站上的浏览方式。
我们分析了从该网站为期8周的评估研究中获得的日志数据。与网站的交互记录在日志数据文件中，包括访问的网页或点击的超链接。使用K均值聚类过程挖掘来识别不同的用户参与模式，这是一种从日志数据中提取见解以对工作流程进行建模和可视化的技术，用于直观呈现用户在网站上的浏览路径。
共有52名参与者，包括21对痴呆症患者及其家庭护理人员以及10名家庭护理人员参与了该研究。在为期8周的研究中，用户平均在5.5（标准差3.4）个不同的日子里在该网站上花费了35.3（标准差82.9）分钟。在整个8周的研究中，家庭护理人员大多（独自或与痴呆症患者一起）使用该网站。只有3名痴呆症患者独自使用过该网站。总共出现了3种不同的参与模式：低、中、高。低参与度的参与者在8周内花在该网站上的时间较少，遵循从信息获取到沟通再到记录的线性路径。中等和高参与度的用户表现出更动态的模式，频繁在信息页面和沟通工具之间切换，以促进对与预先护理规划相关方面的探索。
多样的参与模式凸显了在预先护理规划中提供个性化支持的必要性，并对其他基于网络的工具中传统的线性预先护理规划表示提出了挑战。
