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改变对患有功能性神经障碍的儿童和青少年的护理文化。

Changing the culture of care for children and adolescents with functional neurological disorder.

作者信息

Kozlowska Kasia, Sawchuk Tyson, Waugh Jeff L, Helgeland Helene, Baker Janet, Scher Stephen, Fobian Aaron D

机构信息

Department of Psychological Medicine, The Children's Hospital at Westmead, Westmead, NSW, Australia.

University of Sydney Medical School, Sydney, NSW, Australia.

出版信息

Epilepsy Behav Rep. 2021 Sep 23;16:100486. doi: 10.1016/j.ebr.2021.100486. eCollection 2021.

Abstract

As members of a multidisciplinary team of professionals who treat children and adolescents with functional neurological (conversion) disorder (FND), we highlight the pressing need to develop an FND-informed culture of care that takes into account recent advances in our understanding of this group of patients. Stories of clinical encounters in health care settings from around the world-told by children and adolescents with FND, their parents, and health professionals-portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of FND and its complex neurobiology. After a brief exploration of the outdated culture, we share our : how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems where we practice. We discuss the therapeutic use of child-friendly language. We also discuss a range of structural, educational, and process interventions that can be used to promote FND-informed beliefs and attitudes, FND-informed clinician-patient encounters, and FND-informed referral processes, treatment pathways, and therapeutic interventions.

摘要

作为治疗患有功能性神经(转换)障碍(FND)的儿童和青少年的多学科专业团队成员,我们强调迫切需要建立一种基于FND知识的护理文化,这种文化要考虑到我们对这组患者理解的最新进展。来自世界各地医疗机构的临床遭遇故事——由患有FND的儿童和青少年、他们的父母以及健康专业人员讲述——描绘了一种过时的护理文化,其特点是医源性耻辱、医患关系中同理心和同情心的侵蚀,以及对FND及其复杂神经生物学缺乏理解。在对这种过时文化进行简要探讨之后,我们分享我们的经验:我们以及我们的同事如何开展工作,并继续努力在我们执业的卫生系统中营造一种基于FND知识的文化。我们讨论了使用儿童友好语言的治疗方法。我们还讨论了一系列结构性、教育性和流程性干预措施,这些措施可用于促进基于FND知识的信念和态度、基于FND知识的医患接触,以及基于FND知识的转诊流程、治疗途径和治疗干预措施。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/be14/8567196/54d066f5b9e6/gr1.jpg

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