Stefanie Köhler, Julia Perry, Olga A. Biernetzky, Thomas Kirste, Stefan J. Teipel
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引用次数: 0
摘要
痴呆症削弱了痴呆症患者的自主和独立能力。他们需要第三方的支持,而第三方最好应尽可能尊重他们的自主性和独立性。为痴呆症患者提供支持可能会给照顾者带来很大负担,患者人数增加的同时,潜在的照顾者人数却在减少。直接支持患者或其护理者的数字辅助技术(DATs)可能有助于缩小支持需求与可用资源之间日益扩大的差距。如果在与未来用户密切互动的基础上进行适当设计,数字辅助技术有可能保护痴呆症患者的自主性和独立性,并提高他们的能力。在我们的研究中,我们重点关注了一般 DAT 的伦理问题、技术要求和实施标准,特别是支持痴呆症患者户外行动的标准。我们采用定性方法,与痴呆症患者、亲属、医护人员、科学家、伦理专家和数字辅助医疗专家开展了 "世界咖啡馆"(2 张桌子,n = 7)和在线焦点小组(n = 6)活动。我们采用内容分析法对数据进行了描述性分析。参与者报告了在痴呆症护理中实施 DAT 所面临的技术(如缺乏 Wi-Fi)、资金(如昂贵的设备或缺乏 DAT 的预算)、政治(如法律障碍,如欧洲医疗设备法或数据保护法规)以及与用户相关的障碍(如缺乏数字能力)。讨论的问题包括自主性、独立性、安全性、隐私性的重要性,以及 DAT 使用中的决策能力问题。与会者指出了自学型、情境感知型 DAT 的机遇和益处,并希望建立痴呆症友好型社区。他们强调了人际交往的价值,认为 DAT 不应该取代人际交往,而应该为人际交往提供支持。研究结果揭示了使用数据采集器的多重障碍和伦理问题,并为数据采集器的设计和实施提供了建议。还需要进一步调查 DAT 对护理过程中个人互动的影响以及 DAT 在痴呆症友好社区中的作用。
Ethics, design, and implementation criteria of digital assistive technologies for people with dementia from a multiple stakeholder perspective: a qualitative study
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. 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. 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. 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.
期刊介绍:
BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies.