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“他们正在体验我们的世界”:在澳大利亚首都领地,对多发性硬化症患者在 COVID-19 大流行期间获得医疗保健的体验的定性研究。

'They're getting a taste of our world': A qualitative study of people with multiple sclerosis' experiences of accessing health care during the COVID-19 pandemic in the Australian Capital Territory.

机构信息

Department of Health Services, Research and Policy, Australian National University, Canberra, ACT, Australia.

Medical School, Australian National University, Canberra, ACT, Australia.

出版信息

Health Expect. 2021 Oct;24(5):1607-1617. doi: 10.1111/hex.13284. Epub 2021 Jul 6.

Abstract

BACKGROUND

People with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health-care providers to manage their health.

OBJECTIVE

To elucidate people with MS' experiences of accessing health care during the COVID-19 pandemic in Australia.

DESIGN

A qualitative study involving semi-structured interviews and thematic analysis.

SETTINGS AND PARTICIPANTS

Eight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020.

RESULTS

Participants were aware that having MS made them more vulnerable to contracting COVID-19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face-to-face consultation. Benefits of telehealth consultations included improved access, convenience and being contact-free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health-care routines.

DISCUSSION AND CONCLUSION

Personal risk assessment and trust in health-care professionals are determinants of the mode through which people with MS accessed health care during the COVID-19 pandemic. Telehealth has been a valuable tool to mitigate COVID-19 transmission through enabling contact-free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations.

PATIENT OR PUBLIC CONTRIBUTION

This study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers.

摘要

背景

多发性硬化症(MS)患者通常免疫功能低下,需要复杂的护理,并与各种医疗保健提供者合作来管理他们的健康。

目的

阐明澳大利亚多发性硬化症患者在 COVID-19 大流行期间获得医疗保健的经历。

设计

一项涉及半结构化访谈和主题分析的定性研究。

地点和参与者

2020 年 6 月至 7 月期间,8 名临床诊断为 MS 的成年人通过电话或视频通话接受了访谈。

结果

参与者意识到患有 MS 会使他们更容易感染 COVID-19。在某些情况下,通常的护理被推迟或未寻求。有些情况需要面对面咨询的风险。远程医疗咨询的好处包括改善了可及性、便利性和无接触性。与视频咨询相比,电话咨询被认为不太人性化,并且身体语言和体格检查的能力有限。大多数参与者希望将远程医疗纳入他们未来的医疗保健常规。

讨论与结论

个人风险评估和对医疗保健专业人员的信任是 MS 患者在 COVID-19 大流行期间通过何种方式获得医疗保健的决定因素。远程医疗一直是通过无接触咨询来减轻 COVID-19 传播的宝贵工具。视频咨询可能对 MS 患者具有特定价值,因为它可以可视化身体功能。所有临床医生都需要接受远程咨询的培训和支持。

患者或公众贡献

这项研究由一名患有 MS 的患者、一名神经科医生和四名卫生服务研究人员组成的团队进行。

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