PDF(Pubmed)
Abstract：
BACKGROUND: People with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the \'Thinking Now About Later\' tool, with open-ended questions about \'what matters most\', and (2) a digital version of the \'Life Wishes Cards\', a card tool with pre-formulated statements that prompt reflection about wishes for future care. This study aimed to evaluate the use of and experiences with two web-based tools by people with dementia and their family caregivers.
METHODS: During an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data.
RESULTS: Of 52 participants, 21 people had dementia and 31 were family caregivers. The \'Thinking Now About Later\' tool and \'Life Wishes Cards\' were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online.
CONCLUSIONS: Although less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools.
METHODS: During an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data.
RESULTS: Of 52 participants, 21 people had dementia and 31 were family caregivers. The \'Thinking Now About Later\' tool and \'Life Wishes Cards\' were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online.
CONCLUSIONS: Although less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools.
摘要：
背景：患有痴呆症的人及其家庭照顾者在参与预先护理计划（ACP）时经常遇到挑战，例如缺乏信息和参与ACP对话的困难。使用以用户为中心的设计，我们开发了两个基于Web的交互式工具，作为ACP支持网站的一部分，以刺激ACP的反思和沟通：（1）“现在思考以后”工具，关于“什么最重要”的开放式问题，和(2)数字版本的“生活愿望卡”，带有预先制定的陈述的卡片工具，可提示对未来护理的愿望进行反思。这项研究旨在评估痴呆症患者及其家庭护理人员使用两种基于网络的工具的经验。
方法：在八周的时间内，痴呆症患者和家庭护理人员被邀请以他们喜欢的方式使用ACP支持网站.ACP工具的混合方法评估涉及捕获日志数据以评估网站使用情况和半结构化定性访谈以捕获经验。分析包括日志数据的描述性统计和定性数据的框架分析。
结果：在52名参与者中，21人患有痴呆症，31人是家庭照顾者。“现在思考以后”工具和“生活愿望卡”分别被访问了136次和91次，平均会话持续时间为14分钟(SD=27.45分钟)。22名参与者积极参与工具，大多数人曾经使用过这些工具，七个人重新审视他们。那些使用这些工具的人重视它为痴呆症患者与其家庭护理人员之间的ACP对话提供的指导。参与者报告说，痴呆症患者在自己使用这些工具时遇到了障碍，因此,家庭护理人员通常为痴呆症患者的使用和参与提供便利.一些人强调，在完成在线工具后，不知道接下来要采取什么步骤。
结论：尽管使用ACP工具的人不到一半，那些使用它们的人发现它们有助于促进痴呆症患者与家人之间的沟通。痴呆症患者的家庭护理人员在促进使用基于网络的工具方面发挥了至关重要的作用。
方法：在八周的时间内，痴呆症患者和家庭护理人员被邀请以他们喜欢的方式使用ACP支持网站.ACP工具的混合方法评估涉及捕获日志数据以评估网站使用情况和半结构化定性访谈以捕获经验。分析包括日志数据的描述性统计和定性数据的框架分析。
结果：在52名参与者中，21人患有痴呆症，31人是家庭照顾者。“现在思考以后”工具和“生活愿望卡”分别被访问了136次和91次，平均会话持续时间为14分钟(SD=27.45分钟)。22名参与者积极参与工具，大多数人曾经使用过这些工具，七个人重新审视他们。那些使用这些工具的人重视它为痴呆症患者与其家庭护理人员之间的ACP对话提供的指导。参与者报告说，痴呆症患者在自己使用这些工具时遇到了障碍，因此,家庭护理人员通常为痴呆症患者的使用和参与提供便利.一些人强调，在完成在线工具后，不知道接下来要采取什么步骤。
结论：尽管使用ACP工具的人不到一半，那些使用它们的人发现它们有助于促进痴呆症患者与家人之间的沟通。痴呆症患者的家庭护理人员在促进使用基于网络的工具方面发挥了至关重要的作用。
