背景:痴呆损害了痴呆患者自主和独立的能力。他们需要第三方的支持,理想情况下,他们应该尽可能尊重他们的自主权和独立性。支持痴呆症患者对护理人员来说可能是非常沉重的负担,患者数量增加,而潜在护理人员数量下降。直接支持患者或其护理人员的数字辅助技术(DAT)可能有助于弥合支持需求与可用资源之间日益扩大的差距。DAT有可能保持痴呆症患者的自主性和独立性,并提高他们的能力,如果它们在与未来用户的密切互动中设计得当。在我们的研究中,我们专注于道德问题,技术要求,和一般DAT的实施标准,特别是支持痴呆症患者的户外活动。
方法:我们采用了定性方法,并进行了WorldCafé(2表,n=7)和一个有痴呆症患者的在线焦点小组(n=6),亲戚,医疗保健专业人员,科学家,伦理专家,和数字辅助医疗专家。我们使用内容分析方法对数据进行了描述性分析。
结果:参与者报告了技术(例如,缺乏Wi-Fi),财务(例如,昂贵的设备或缺乏DAT预算),政治(例如,法律障碍,如欧洲医疗器械法或数据保护法规)以及与用户相关的障碍(例如,缺乏数字能力)在痴呆症护理中实施DAT。讨论的问题包括自治的重要性,独立性,安全,隐私,以及DAT使用中的决策能力问题。参与者确定了自学的机会和好处,了解情况的DAT,并希望建立对痴呆症友好的社区。他们强调个人互动的价值不应取代,而是由DAT支持。
结论:结果揭示了使用DAT的多个障碍和伦理问题,并为设计和实施DAT提供了建议。需要进一步调查DAT对护理中个人互动的影响以及DAT在痴呆症友好社区中的作用。
BACKGROUND: Dementia impairs the ability of people with dementia to be autonomous and independent. They need support from third parties, who should ideally respect their autonomy and independence as much as possible. Supporting people with dementia can be very burdensome for caregivers and numbers of patients increase while numbers of potential caregivers decline. Digital assistive technologies (DATs) that directly support patients or their caregivers may help bridging the increasing gap between need of support and available resources. DATs have the potential to preserve the autonomy and independence of people with dementia and promote their abilities, if they are properly designed in close interaction with future users. In our study, we focused on ethical concerns, technological requirements, and implementation criteria for DAT in general and specifically to support outdoor mobility of people with dementia.
METHODS: We applied a qualitative approach and conducted a World Café (2 tables, n = 7) and an online focus group (n = 6) with people with dementia, relatives, healthcare professionals, scientists, ethics experts, and experts for digitally-assisted medical care. We descriptively analyzed the data using a content analysis approach.
RESULTS: The participants reported technological (e.g., lack of Wi-Fi), financial (e.g., expensive devices or lack of budget for DATs), political (e.g., legal hurdles such as the European Medical Device Law or data protection regulations) as well as user-related hurdles (e.g., lack of digital competence) for the implementation of DAT in dementia care. Among the issues discussed were the importance of autonomy, independence, safety, privacy, and questions of decision making capacity in DAT\'s use. Participants identified opportunities and benefits in self-learning, situation-aware DATs and wished for dementia-friendly communities. They emphasized the value of personal interaction that should not be replaced, but rather supported by DAT.
CONCLUSIONS: The results revealed multiple hurdles and ethical concerns for DAT use and provided recommendations for designing and implementing DATs. Further investigations are needed on the impact of DAT on personal interactions in caregiving and the role of DAT in dementia-friendly communities.