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患者对运动神经元疾病多学科居家电子健康服务提供的看法。

Patients' perspectives of multidisciplinary home-based e-Health service delivery for motor neurone disease.

作者信息

James Natalie, Power Emma, Hogden Anne, Vucic Steve

机构信息

a St Joseph's Hospital , Sydney , Australia.

b University of Sydney, Speech Pathology, Faculty of Health Sciences , Sydney , Australia.

出版信息

Disabil Rehabil Assist Technol. 2019 Oct;14(7):737-743. doi: 10.1080/17483107.2018.1499139. Epub 2018 Sep 5.

Abstract

To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care. Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants' experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach. Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants' use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients' main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease. People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health. Implications for Rehabilitation People living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel. Patients have indicated willingness to use e-Health applications to improve their access to care. Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning. By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered.

摘要

探讨运动神经元病(MND)患者对于使用居家电子健康服务提供方式(远程医疗)获取MND多学科门诊护理的障碍、促进因素及潜在益处的看法。来自三个MND多学科门诊和一个MND支持协会小组的12名患者完成了一项关于信息技术(IT)使用情况的调查,并参与了访谈,以收集参与者对于居家远程医疗用于MND门诊护理的体验和看法。对调查数据进行描述性分析,对访谈数据采用逐步归纳法进行分析。调查显示,参与者使用IT与家人和朋友交流,但与医疗专业人员通过电话、电子邮件或视频会议交流的可能性较小。参与者在MND护理中使用IT的两个主题反映了他们的MND护理体验以及对医疗服务提供方式的个人偏好。参与者愿意使用远程医疗进行MND护理,家庭成员是患者参与远程医疗的主要支持者。然而,参与者在疾病的初始和早期阶段更倾向于与MND门诊团队进行面对面接触。患有MND的人可能希望参与个性化护理计划,以便利他们使用各种电子健康服务模式。此外,个性化护理计划可能使医疗专业人员能够提供基于电子健康的护理,如远程医疗,以扩大护理范围。需要开展研究以确定医疗专业人员和家庭成员作为远程医疗服务共同参与者的看法,以便全面评估电子健康的潜在贡献。对康复的启示患有MND的人在接受专科多学科护理方面面临一系列障碍,包括疲劳、照顾者可用性以及出行的后勤挑战。患者已表示愿意使用电子健康应用程序来改善他们获得护理的机会。使用远程医疗可以将服务提供范围扩大到居住在距离多学科门诊较远的MND患者,并通过定制护理计划增加以患者为中心的护理重点。通过常规提供远程医疗服务,MND多学科门诊还可以提高所提供服务的质量和及时性。

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