“我因为痛苦而感到被轻视和嘲笑”：一项关于英国自闭症患者流产（围产期流产）护理经历的在线调查。

IF 2.6 3区医学 Q1 NURSING

Midwifery Pub Date : 2025-02-01 DOI:10.1016/j.midw.2024.104266

Aimee Grant , Catrin Griffiths , Kathryn Williams , Amy E. Brown

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引用次数: 0

摘要

背景：大约3%的人患有自闭症；女性可能未被充分诊断。自闭症患者报告说，在使用助产服务方面缺乏工作人员的理解、污名化和环境障碍。目前尚不清楚这些问题是否存在于围产期损失服务中。目的：了解自闭症患者围产期损失护理经历。方法：对英国已经怀孕的自闭症成年人进行在线调查，采用封闭式和开放式问题。使用Kruskal-Wallis测试和主题方法对数据进行描述性分析。结果：大多数损失出现在妊娠早期。在67名参与者中，超过一半（58.2%,n = 39）在围产期损失期间总是寻求医疗保健，但28.4% （n = 19）从未获得医疗保健。在接受医疗保健的人中(n = 48；71.6%)，超过一半(n = 27；（56.3%）当时不知道自己患有自闭症，只有一个人告诉卫生专业人员他们患有自闭症。4名与会者确定了工作人员提供支持或友好的情况，但大多数情况是负面的，报告的问题集中在沟通、提供支持的方式、缓解疼痛不足和医院环境等方面。我们产生了一个总体主题：“创伤”。结论：除了一般人群报告的问题外，来自英国的自闭症患者还发现了与围产期损失护理相关的重大残疾相关问题。英国围产期损失服务需要紧急投资，以便能够为所有人提供以人为本的护理。支持围产期损失的工作人员应该接受神经多样性确认自闭症培训，并意识到许多经历围产期损失的自闭症患者可能没有或没有共享诊断。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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“I felt belittled and ridiculed for being in pain”: An online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom✰

Background

Around 3 % of people are Autistic; women may be under-diagnosed. Autistic people report lack of staff understanding, stigma and environmental barriers to using midwifery services. It is not known if these issues are present in perinatal loss services.

Aim

To understand Autistic people's experiences of care for perinatal loss.

Methods

An online survey for Autistic adults in the United Kingdom who had been pregnant, using closed and open questions. Data were analysed descriptively, using Kruskal-Wallis tests and thematically.

Results

The majority of losses appeared to be early in pregnancy. Among 67 participants, over half (58.2 %, n = 39) always sought healthcare during a perinatal loss, but 28.4 % (n = 19) never accessed care. Of those who received healthcare (n = 48; 71.6 %), over half (n = 27; 56.3 %) did not know they were Autistic at the time, and just one person told health professionals that they were Autistic. Four participants identified instances where staff were supportive or kind, but the majority of experiences were negative, with reported issues focused on communication, the way support was provided, inadequate pain relief and the hospital environment. We generated one overarching theme: “trauma”.

Conclusion

Autistic people from the UK identified significant Disability-related access issues with perinatal loss care in addition to issues reported by a general population. UK Perinatal loss services need urgent investment to be able to provide person-centred care to all. Staff supporting perinatal loss should receive neurodiversity-affirming Autism training and be aware that many Autistic people experiencing perinatal loss may not have or share a diagnosis.

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来源期刊

Midwifery 医学-护理

CiteScore

4.50

自引率

7.40%

发文量

221

审稿时长

13.4 weeks

期刊介绍： Midwifery publishes the latest peer reviewed international research to inform the safety, quality, outcomes and experiences of pregnancy, birth and maternity care for childbearing women, their babies and families. The journal’s publications support midwives and maternity care providers to explore and develop their knowledge, skills and attitudes informed by best available evidence. Midwifery provides an international, interdisciplinary forum for the publication, dissemination and discussion of advances in evidence, controversies and current research, and promotes continuing education through publication of systematic and other scholarly reviews and updates. Midwifery articles cover the cultural, clinical, psycho-social, sociological, epidemiological, education, managerial, workforce, organizational and technological areas of practice in preconception, maternal and infant care. The journal welcomes the highest quality scholarly research that employs rigorous methodology. Midwifery is a leading international journal in midwifery and maternal health with a current impact factor of 1.861 (© Thomson Reuters Journal Citation Reports 2016) and employs a double-blind peer review process.