与数字自我监测进行谈判:一项关于多发性硬化症患者如何在科学研究中使用和体验数字自我监测的定性研究。

IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Health Pub Date : 2024-05-01 Epub Date: 2023-05-17 DOI:10.1177/13634593231175321
Karine Wendrich, Lotte Krabbenborg
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引用次数: 0

摘要

研究表明,患者的价值观和使用习惯可能与技术开发者的设想不同。我们以社会物质主义为分析视角,展示了在一项科学研究中,患者是如何与数字自我监控进行协商的。我们的论文借鉴了对 26 名慢性神经疾病多发性硬化症(MS)患者的访谈,这些患者受邀在 12 个月内使用活动追踪器和自我监控应用程序,并将其作为日常生活的一部分。我们的研究旨在填补一个空白:人们对数字自我监控如何在慢性病患者的日常生活中具体化知之甚少。我们的研究表明,患者之所以参与数字自我监测,是因为他们渴望参与研究,以贡献出有益于广大患者的知识,而不是为了改善个人的自我管理。虽然受访者在研究过程中坚持进行数字自我监测,但他们这样做的私人自我监测目的并不明显。显然,受访者并不一定认为数字自我监测对他们的自我管理实践有用,因为他们已经有了自己的知识和习惯。此外,受访者还提到了必须执行自我监测任务所带来的不便,以及因数字自我监测而被提醒多发性硬化症所带来的精神负担。最后,我们指出了在设计科学研究时应考虑的问题,包括传统研究设计是否适合评估患者日常使用的技术,以及将患者的经验知识融入科学实践所面临的挑战。
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Negotiating with digital self-monitoring: A qualitative study on how patients with multiple sclerosis use and experience digital self-monitoring within a scientific study.

Research shows that patients can have values and use practices that are different from those envisioned by technology developers. Using sociomaterialism as an analytical lens, we show how patients negotiated with digital self-monitoring in the context of a scientific study. Our paper draws on interviews with 26 patients with the chronic neurological disease multiple sclerosis (MS) who were invited to use an activity tracker and a self-monitoring app for a period of 12 months as part of their everyday life. Our study aims to fill a gap: relatively little is known about how digital self-monitoring becomes materialized in the everyday lives of patients with chronic diseases. We show that patients engaged in digital self-monitoring because they are eager to participate in research to contribute knowledge that will benefit the larger community of patients rather than to improve their personal self-management. Although respondents adhered to digital self-monitoring during the study, it is not self-evident that they would do so for private self-monitoring purposes. It became clear that respondents did not necessarily perceive digital self-monitoring as useful for their self-management practices due to their established knowledge and routines. Moreover, respondents referred to the inconvenience of having to perform self-monitoring tasks and the emotional burden of being reminded of the MS because of the digital self-monitoring. We conclude by indicating what could be considered when designing scientific studies, including the suitability of conventional study designs for evaluating technologies used daily by patients and the challenge of integrating patients' experiential knowledge into scientific practices.

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来源期刊
Health
Health Multiple-
CiteScore
4.90
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0.00%
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0
期刊介绍: Health: is published four times per year and attempts in each number to offer a mix of articles that inform or that provoke debate. The readership of the journal is wide and drawn from different disciplines and from workers both inside and outside the health care professions. Widely abstracted, Health: ensures authors an extensive and informed readership for their work. It also seeks to offer authors as short a delay as possible between submission and publication. Most articles are reviewed within 4-6 weeks of submission and those accepted are published within a year of that decision.
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