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“他们为什么要给我做检查?” 通过电子健康和医患关系实现患者参与:定性研究

"Why Do They Need to Check Me?" Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study.

作者信息

Grünloh Christiane, Myreteg Gunilla, Cajander Åsa, Rexhepi Hanife

机构信息

School of Computer Science and Communication, KTH Royal Institute of Technology, Stockholm, Sweden.

Institute of Informatics, Technische Hochschule Köln, University of Applied Sciences, Gummersbach, Germany.

出版信息

J Med Internet Res. 2018 Jan 15;20(1):e11. doi: 10.2196/jmir.8444.

Abstract

BACKGROUND

Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients.

OBJECTIVE

This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians' constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement.

METHODS

A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed.

RESULTS

Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient's role, lack of skills (technical or regarding medical jargon), motives to read, and patients' characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care.

CONCLUSIONS

Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of "power" in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of "monitoring the doctor" but to make sense of the situation.

摘要

背景

医患关系中的角色正在发生变化,患者参与医疗保健越来越受到重视。诸如患者可访问的电子健康记录(PAEHR)等电子健康(eHealth)服务已被实施以支持患者参与。关于PAEHR的实际使用及其对医生和患者角色的影响知之甚少。

目的

这项定性研究旨在调查医生如何看待患者参与的理念,特别是与PAEHR系统相关的理念。因此,本文旨在更深入地理解医生对PAEHR的构建、医患关系中的角色以及参与的程度和限度。

方法

对不同领域的医生进行了总共12次半结构化访谈。访谈内容被转录、翻译,并进行了基于理论的主题分析。

结果

确定了与医患关系相关的两个重要方面:角色和参与。医生将自己的角色视为承担责任、确定治疗方案以及值得信任的人。关于患者的角色,访谈中提到的方面包括缺乏技能(技术或医学术语方面)、阅读动机以及患者的特征。患者通常被视为静态的个体,而忽略了他们随着时间推移发展技能和知识的潜力。参与涵盖了支持或阻碍患者在其护理中发挥积极作用的各个方面。

结论

至少二十年的文献表明,人们普遍认为医疗保健中的家长式方法不合适,应该采用与患者的协作过程。尽管本研究中的医生表示他们原则上支持患者参与,但分析发现他们在日常实践描述中几乎没有支持患者实际参与的内容。从结果可以看出,家长式做法仍然存在,即使专业人员可能没有意识到这一点。这可能会在努力获取更多信息的患者与他们的问题被解释为对医生的批评和不信任迹象之间产生冲突。因此,我们认为PAEHR的全部潜力尚未实现,并认为患者赋权的概念存在问题,因为它将医疗保健中的“权力”解释为零和博弈,这无助于维持参与者之间的关系。患者参与通常仅在决策方面进行讨论;然而,本研究强调还需要包括意义建构和学习活动。这将提供对患者提问的另一种理解,不是从“监督医生”的角度,而是为了理解情况。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/401a/5789160/36cd819119d3/jmir_v20i1e11_fig1.jpg

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