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一种用于治疗关节过度活动症/埃勒斯-当洛斯综合征-过度活动型(JHS/EDS-HT)的人文化方法。

A humanisation approach for the management of Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT).

机构信息

a Department Human Sciences and Public Health, Faculty of Health and Social Sciences , Bournemouth University , Bournemouth , UK.

b Private Bowen Practitioner, Hamilton House , London , UK.

出版信息

Int J Qual Stud Health Well-being. 2017 Dec;12(1):1371993. doi: 10.1080/17482631.2017.1371993.

Abstract

Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT) is a complex and multisystemic condition which significantly impacts on a person's health and well-being and is challenging for health professionals (HPs) to manage. People with JHS/EDS-HT and HPs recognise the individual nature and the complexities of the condition. There is a requirement to understand the condition within the context of the individual human dimensions of illness and healing. The aim of this paper is to explore the management of this condition using a theoretical model referred to as the Humanisation Framework.  It is suggested that using the philosophical dimensions of this framework will empower HPs and those with JHS/EDS-HT to work together to proactively manage this condition. The eight dimensions of the Humanisation Framework facilitate an experiential understanding of the person within their context and environment, providing a constructive adjunct to the evidence-based management of those with JHS/EDS-HT. The humanisation framework was developed for health and social care and uses the philosophy behind well-being and what makes well-being possible. This paper explores how HPs may use aspects of the framework to understand the condition and empower and motivate those with JHS/EDS-HT to be active participants in their own well-being.

摘要

联合过度活动综合征/埃勒斯-当洛斯综合征-过度活动型(JHS/EDS-HT)是一种复杂的多系统疾病,严重影响着人们的健康和福祉,给健康专业人员(HPs)的管理带来了挑战。JHS/EDS-HT 患者和 HPs 都认识到该疾病的个体性质和复杂性。需要在疾病和治疗的个体人类维度的背景下理解该疾病。本文的目的是使用一种称为人性化框架的理论模型来探讨该疾病的管理。有人认为,使用该框架的哲学维度将使 HPs 和 JHS/EDS-HT 患者能够共同努力,积极管理这种疾病。人性化框架的八个维度促进了对个人在其背景和环境中的体验式理解,为 JHS/EDS-HT 患者的循证管理提供了有益的补充。人性化框架是为医疗保健和社会关怀而开发的,它运用了幸福感背后的哲学和使幸福感成为可能的因素。本文探讨了 HPs 如何利用框架的各个方面来理解疾病,并赋予和激励 JHS/EDS-HT 患者积极参与自身幸福感的能力。

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