PDF(Pubmed)
Abstract：
BACKGROUND: Web-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families.
OBJECTIVE: This paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families.
METHODS: The development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire.
RESULTS: This study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023.
CONCLUSIONS: The methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study.
UNASSIGNED: DERR1-10.2196/46935.
OBJECTIVE: This paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families.
METHODS: The development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire.
RESULTS: This study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023.
CONCLUSIONS: The methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study.
UNASSIGNED: DERR1-10.2196/46935.
摘要：
背景：多年来，针对痴呆症患者及其家庭护理人员的基于Web的工具已大大增加，并为一些未满足的需求提供了有希望的解决方案，例如支持日常生活中的自我护理。促进治疗交付，或确保他们的沟通能力。在痴呆症患者及其家庭照顾者的预先护理计划(ACP)领域使用基于网络的工具还有待探索，需要仔细考虑，鉴于痴呆症患者及其家人的敏感话题和特殊需求。
目的：本文报告了一项旨在开发和同时测试ACP网站可用性的研究协议，和,痴呆症患者及其家人。
方法：网站的开发基于用于开发基于网络的决策支持干预措施的过程图以及用于复杂干预措施开发和评估的医学研究委员会框架。此外,我们在整个开发过程中采用以用户为中心的方法,结合患者和公众参与(PPI).我们描述了我们对网站的迭代开发方法。参与者和PPI小组对ACP网站的4个原型提供反馈。对于每次迭代，我们的目标是包括12名参与者(3名痴呆症患者，3家庭照顾者，和3个二元组合)在可用性测试中。在前3次迭代中，可用性测试包括(1)大声思考练习，(2)研究者的观察，(3)系统可用性量表问卷。可用性测试的最后一次迭代由评估布局的半结构化访谈组成，内容,面部有效性，和网站的可读性。使用主题分析对来自大声思考练习和访谈的定性数据进行分析。计算系统可用性量表问卷的平均得分。
结果：本研究获得布鲁塞尔自由大学布鲁塞尔大学医院伦理审查委员会的批准。2021年10月开始招聘。提交开发和可用性测试结果的目标日期为2023年。
结论：本协议中的方法描述了一种可行且包容的方法，以与痴呆症患者一起开发ACP网站。他们的家庭照顾者，和其他利益相关者。我们提供了如何结合PPI输入和以用户为中心的开发方法的清晰概述，导致透明和可靠的开发过程。该协议可能会刺激痴呆症患者的积极参与，他们的照顾者，和区域利益相关者在未来的网络技术研究中。这项研究的结果将用于完善设计，并创建一个相关且用户友好的ACP网站，该网站已准备好在更大的评估研究中进行测试。
■DERR1-10.2196/46935。
目的：本文报告了一项旨在开发和同时测试ACP网站可用性的研究协议，和,痴呆症患者及其家人。
方法：网站的开发基于用于开发基于网络的决策支持干预措施的过程图以及用于复杂干预措施开发和评估的医学研究委员会框架。此外,我们在整个开发过程中采用以用户为中心的方法,结合患者和公众参与(PPI).我们描述了我们对网站的迭代开发方法。参与者和PPI小组对ACP网站的4个原型提供反馈。对于每次迭代，我们的目标是包括12名参与者(3名痴呆症患者，3家庭照顾者，和3个二元组合)在可用性测试中。在前3次迭代中，可用性测试包括(1)大声思考练习，(2)研究者的观察，(3)系统可用性量表问卷。可用性测试的最后一次迭代由评估布局的半结构化访谈组成，内容,面部有效性，和网站的可读性。使用主题分析对来自大声思考练习和访谈的定性数据进行分析。计算系统可用性量表问卷的平均得分。
结果：本研究获得布鲁塞尔自由大学布鲁塞尔大学医院伦理审查委员会的批准。2021年10月开始招聘。提交开发和可用性测试结果的目标日期为2023年。
结论：本协议中的方法描述了一种可行且包容的方法，以与痴呆症患者一起开发ACP网站。他们的家庭照顾者，和其他利益相关者。我们提供了如何结合PPI输入和以用户为中心的开发方法的清晰概述，导致透明和可靠的开发过程。该协议可能会刺激痴呆症患者的积极参与，他们的照顾者，和区域利益相关者在未来的网络技术研究中。这项研究的结果将用于完善设计，并创建一个相关且用户友好的ACP网站，该网站已准备好在更大的评估研究中进行测试。
■DERR1-10.2196/46935。
