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未被倾听的声音:一项定性调查,探索失独父母对死产耻辱的体验。

Voices of the unheard: A qualitative survey exploring bereaved parents experiences of stillbirth stigma.

机构信息

University of South Australia, School of Nursing and Midwifery, City East Campus, 108 North Terrace, Adelaide, South Australia, 5001, Australia.

University of South Australia, School of Psychology, Social Work and Social Policy, Australia.

出版信息

Women Birth. 2020 Mar;33(2):165-174. doi: 10.1016/j.wombi.2019.03.002. Epub 2019 Apr 17.

Abstract

BACKGROUND

Every year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce.

AIM

This study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth.

METHODS

An online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries.

FINDINGS

Based on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan's stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered.

CONCLUSION

Bereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women.

摘要

背景

全球每年仍有 260 万婴儿死亡。尽管有这些数据,仍有大量人认为死产仍是一个相对容易被忽视的公共卫生问题。更广泛的文献表明,这是由于与死产相关的耻辱感造成的。死产的耻辱感被认为是降低死产率和支持丧亲父母的最大障碍之一。然而,关于死产耻辱感的程度、类型和经历的经验证据仍然很少。

目的

本研究旨在探讨经历过死产的丧亲父母所经历的耻辱感。

方法

在高收入国家,对 817 名参与者(n=796 名女性;n=17 名男性)进行了一项带有封闭和开放式问题的在线调查。

结果

基于自我认知,38%的丧亲父母认为他们因为死产而受到了歧视。主题数据分析揭示了几个与 Link 和 Phelan 的耻辱感理论一致的主题,包括标签、刻板印象、地位丧失和歧视、分离和权力。还发现了一个超出该理论的主题——丧亲父母是变革的推动者。

结论

死产后的丧亲父母可能会经历耻辱感。常见的经历包括羞耻感、责备感、母性贬值和歧视感。丧亲父母还报告说,在产前护理期间存在死产的沉默,许多医疗保健提供者没有告知他们死产的可能性。需要进一步研究,以探讨丧亲父母在死产后所经历的耻辱感的程度和类型,以及耻辱感如何影响向孕妇传播和分配资源的医疗保健专业人员。

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