Dupont Charlèss, Monnet Fanny, Pivodic Lara, Vleminck Aline De, Audenhove Chantal Van, Van den Block Lieve, Smets Tinne
VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel, Brussel, Belgium.
Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel, Brussel, Belgium.
Digit Health. 2023 Aug 28;9:20552076231197021. doi: 10.1177/20552076231197021. eCollection 2023 Jan-Dec.
Web-based tools (e.g., websites, apps) for people with dementia and their family caregivers may be useful in supporting advance care planning (ACP). Using a user-centred design approach, we developed an ACP website for people with dementia and their families. This protocol describes how we will test and evaluate the ACP website. Publishing a study protocol can guide others who want to evaluate web-based tools. Moreover, the data collection methods used in this study are very innovative since they aim to involve people living with dementia without overburdening them.
We will conduct an evaluation study of the ACP website in Flanders, Belgium, using a convergent parallel mixed methods pre-post-test design with continuous follow-up. Thirty eligible dyads of people with mild to moderate dementia (both early and late onset) and their family caregivers will use the website in their everyday life for 8 weeks. We will evaluate the usage, usability, acceptability, and feasibility of the website, as well as the experiences of users. Additionally, we evaluate the effects of using the website on ACP readiness, ACP knowledge, attitudes, perceived barriers to engage in ACP, self-efficacy and skills to engage in ACP.
Recruitment and data collection is foreseen between end of 2022 and 2023.
This evaluation study of an ACP website for people with dementia and their family caregivers will be the first to evaluate how a web-based tool can support people living with dementia and their families in ACP. The strength of this study lies in the combination of interviews, surveys, and ongoing data logging, which provide insights into the use of support tools in people's daily context. We expect that recruiting people with dementia and their families will be difficult so we have set up a thorough strategy to reach the anticipated sample size.
针对痴呆症患者及其家庭护理人员的基于网络的工具(如网站、应用程序)可能有助于支持预先护理计划(ACP)。我们采用以用户为中心的设计方法,为痴呆症患者及其家人开发了一个ACP网站。本方案描述了我们将如何测试和评估该ACP网站。发布研究方案可以为其他想要评估基于网络的工具的人提供指导。此外,本研究中使用的数据收集方法非常创新,因为它们旨在让痴呆症患者参与其中,同时又不会给他们造成过重负担。
我们将在比利时弗拉芒地区对该ACP网站进行评估研究,采用前后测收敛平行混合方法设计并持续跟踪。30对符合条件的轻度至中度痴呆症患者(包括早发型和晚发型)及其家庭护理人员将在日常生活中使用该网站8周。我们将评估网站的使用情况、可用性、可接受性和可行性,以及用户的体验。此外,我们还将评估使用该网站对ACP准备情况、ACP知识、态度、参与ACP的感知障碍、自我效能感和参与ACP的技能的影响。
预计在2022年底至2023年期间进行招募和数据收集。
这项针对痴呆症患者及其家庭护理人员的ACP网站评估研究将是首个评估基于网络的工具如何在ACP方面支持痴呆症患者及其家庭的研究。本研究的优势在于将访谈、调查和持续的数据记录相结合,从而深入了解支持工具在人们日常环境中的使用情况。我们预计招募痴呆症患者及其家人会很困难,因此我们制定了一个全面的策略来达到预期的样本量。