JMIR Publications

ABSTRACT

Background:

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.

Objective:

To assess the website's usage by people with dementia and their family caregivers, identify distinct user engagement patterns, and visualise how users navigated the website.

Methods:

We analysed the website’s log data obtained from an eight-week evaluation study of the site. Interactions with the website were collected in the log data and included visited web pages or clicking on hyperlinks. Distinct user engagement patterns were identified using K-means clustering. Process mining was applied to visualise user pathways through the website.

Results:

52 participants, 21 people with dementia and their family caregivers as dyads and 10 family caregivers were included in the study. Throughout the eight-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 eight-week study. Only three people with dementia used it on their own. Three distinct engagement patterns emerged: low, moderate, and high. Low-engagement participants spent less time on the website during the eight 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.

Conclusions:

The diverse engagement patterns underscore the need for personalised support in advance care planning and challenge the conventional linear advance care planning representations found in other web-based tools.