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涉及临床神经技术使用者的定性研究:范围综述。

Qualitative studies involving users of clinical neurotechnology: a scoping review.

机构信息

Faculty of Medicine, Institute for History and Ethics of Medicine, Technical University of Munich, Munich, Germany.

College of Humanities, École Polytechnique Fédérale de Lausanne, Lausanne, Switzerland.

出版信息

BMC Med Ethics. 2024 Aug 14;25(1):89. doi: 10.1186/s12910-024-01087-z.

DOI:10.1186/s12910-024-01087-z
PMID:39138452
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11323440/
Abstract

BACKGROUND

The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking.

METHODS

To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions.

RESULTS

36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience.

CONCLUSIONS

Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology.

摘要

背景

新一代智能神经假体、脑机接口 (BCI) 和自适应闭环脑刺激设备的兴起加速了神经技术在治疗神经和神经精神疾病方面的临床应用。然而,这些新兴技术如何影响其用户的主观体验仍不清楚。为了推动这一辩论,深入了解更成熟的现有技术如何影响其用户至关重要。近年来,研究人员使用定性研究方法来探索成为临床神经技术使用者的个体的主观体验。然而,仍然缺乏对这些更近期关注定性方法的发现的综合。

方法

为了弥补文献中的这一空白,我们系统地在五个数据库中搜索了原始研究文章,这些文章调查了使用或接受神经假体、BCI 或神经调节的个体的主观体验,采用定性访谈和提出规范性问题。

结果

共纳入 36 篇研究文章,并使用定性内容分析进行分析。我们的研究结果综合了当前的科学文献,揭示了对用户体验的可用性和其他技术方面的明显关注。与此同时,它们还强调了对自主性、自我认知、个人身份和主观体验的考虑相对忽视。

结论

我们对临床神经技术的现有定性文献的综合强调了需要扩大当前的方法学重点,以研究用户体验的非技术方面。鉴于自主性、自我认知和个人身份的考虑在评估这些技术的伦理和法律意义方面的关键作用,我们的研究结果揭示了现有文献中的一个关键差距。本综述全面综合了神经技术当前的定性研究现状及其局限性。这些发现可以为研究人员提供信息,了解如何更全面地研究神经技术用户的主观体验,并构建以患者为中心的神经技术。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ba23/11323440/4357bae6f74d/12910_2024_1087_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ba23/11323440/dce3d4106d35/12910_2024_1087_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ba23/11323440/0da97797b18a/12910_2024_1087_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ba23/11323440/4357bae6f74d/12910_2024_1087_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ba23/11323440/dce3d4106d35/12910_2024_1087_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ba23/11323440/0da97797b18a/12910_2024_1087_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ba23/11323440/4357bae6f74d/12910_2024_1087_Fig3_HTML.jpg

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Trading Vulnerabilities: Living with Parkinson's Disease before and after Deep Brain Stimulation.交易弱点:深部脑刺激前后的帕金森病生活。
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