作为一个患有埃勒斯-丹洛斯综合征的自闭症个体,在医疗保健系统中导航的复杂性:一个病人的视角。

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES
Journal of Patient Experience Pub Date : 2025-04-15 eCollection Date: 2025-01-01 DOI:10.1177/23743735251333601
Sarah Clark
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引用次数: 0

摘要

由于缺乏临床医生的认识、诊断延误、误诊和系统性障碍,患有超动埃勒-丹洛斯综合征(hEDS)的自闭症患者在医疗系统中经常面临独特的挑战。根据我自己在英国国家医疗服务体系(NHS)的生活经历,这篇病人视角的文章将个人叙述与研究和文献相结合,突出了临床护理中的关键差距,提供了切实可行的建议,以加强公平和包容。建议包括:改善临床医生对神经分化和重叠病症的教育,改善以患者为中心的整体沟通,以及优先考虑患者需求的协作护理模式,从生活经验中学习。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective.

Autistic individuals with hypermobile Ehlers-Danlos syndrome (hEDS) often face unique challenges navigating healthcare systems due to lack of clinician awareness, diagnostic delays, misdiagnoses, and systemic barriers. Drawing on my own lived experience within the UK's National Health Service (NHS), this patient perspective article integrates personal narratives with the research and literature, highlighting critical gaps in clinical care, offering practical recommendations to enhance equity and inclusion. Recommendations include: improved clinician education on neurodivergence and overlapping conditions, improving holistic patient-centred communication, and collaborative care models that prioritise patient needs, learning from lived expertise.

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来源期刊
Journal of Patient Experience
Journal of Patient Experience HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.00
自引率
6.70%
发文量
178
审稿时长
15 weeks
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