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“我正在应对一个不理解我的医疗体系”:为自闭症成年人提供包容的医疗保健的障碍和促进因素。

"I'm dealing with a health care system that doesn't get it": Barriers and facilitators to inclusive healthcare for autistic adults.

机构信息

A.J. Drexel Autism Institute, USA.

Sandra Rosenbaum School of Social Work University of Wisconsin-Madison, USA.

出版信息

Autism. 2024 Jun;28(6):1382-1393. doi: 10.1177/13623613241236380. Epub 2024 Mar 12.

Abstract

Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.

摘要

研究表明,自闭症成年人患心理健康和身体健康问题(如抑郁、焦虑、睡眠障碍、糖尿病、肥胖和心脏问题)的几率可能比非自闭症成年人更高。不幸的是,自闭症成年人的独特医疗保健需求经常被忽视,因此不清楚为什么自闭症成年人的健康状况更差,或者可以采取什么措施来改善。本研究旨在了解自闭症成年人在照顾自己的健康和看不同医生方面所面临的挑战。研究人员在全国范围内采访了自闭症成年人,了解他们的医疗保健经验。接受采访的自闭症成年人向研究人员讲述了影响他们是否获得所需护理的障碍(无益的事情)和促进因素(有帮助的事情)。然后,研究人员将从自闭症成年人那里学到的东西组织成一个称为“患者安全系统工程倡议工作系统模型”。该模型解释了医疗保健系统的不同部分(人、任务、技术和工具、环境和组织)如何相互作用,并影响接受他们护理的患者(如自闭症成年人)的医疗保健体验和结果。总的来说,这项研究提倡采用系统层面的方法来改善自闭症成年人的医疗保健体验和他们的健康结果。

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