Changing the culture of care for children and adolescents with functional neurological disorder.
Changing the culture of care for children and adolescents with functional neurological disorder.
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DOI：
10.1016/j.ebr.2021.100486
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发表时间：
2021
影响因子：
--
通讯作者：
Fobian AD
中科院分区：
文献类型：
--
作者：
Kozlowska K;Sawchuk T;Waugh JL;Helgeland H;Baker J;Scher S;Fobian AD
迫切需要创造一种全面和尊重的文化，照顾患有FND的儿童及其家人。在许多卫生系统中，一种过时的照顾FND儿童的文化挥之不去。过时的文化将医源性的耻辱强加给儿童和家庭。结构性、教育性和过程性干预可以用来促进变革。根本的变化包括采用FND知情的信念、态度和专业人员的转诊/治疗过程。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的成员，我们强调迫切需要发展一种了解FND的护理文化，其中考虑到我们在了解这类患者方面的最新进展。患有FND的儿童和青少年、他们的父母和卫生专业人员讲述了世界各地卫生保健环境中临床遭遇的故事，描绘了一种过时的护理文化，其特点是医源性耻辱、临床医生与患者关系中同理心和同情心的侵蚀，以及对FND及其复杂的神经生物学缺乏了解。在简要探索了过时的文化之后，我们分享了我们的反故事：我们和我们的同事如何工作，并继续努力，在我们执业的卫生系统中创造一种了解FND的文化。我们讨论了儿童友好语言的治疗性使用。我们还讨论了一系列结构、教育和过程干预措施，这些干预措施可用于促进FND知情的信念和态度、FND知情的临床医生与患者的接触以及FND知情的转诊过程、治疗路径和治疗干预措施。
There is a pressing need to create a holistic and respectful culture of care for children with FND and their families. An outdated culture of care for children with FND lingers across many health systems. The outdated culture imposes iatrogenic stigma on children and families. Structural, educational, and process interventions can be used to promote change. Essential changes include adoption of FND-informed beliefs, attitudes, and referral/treatment processes by professionals. 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from around the world—told by children and adolescents with FND, their parents, and health professionals—portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of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 After a brief exploration of the outdated culture, we share our counterstories: how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems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.