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从感到崩溃到超越崩溃:巴勒斯坦母亲养育脊柱裂患儿的经历

From Feeling Broken to Looking Beyond Broken: Palestinian Mothers' Experiences of Having a Child With Spina Bifida.

机构信息

1 University of Gothenburg, Sweden.

2 Al-Quds University, Jerusalem, Palestine.

出版信息

J Fam Nurs. 2017 May;23(2):226-251. doi: 10.1177/1074840717697436. Epub 2017 Mar 15.

Abstract

Spina bifida (SB) is the second most common birth defect worldwide. Mothers of children with SB face extraordinary challenges due to the complicated conditions and disability of their children. Little is known about the impact of these challenges on the mothers' well-being, particularly in Middle Eastern culture, where chronic illness and disability are perceived as a stigma, and care of disabled children has traditionally been the responsibility of the mother. The aim of this study was to illuminate mothers' lived experience of having a child with SB in Palestine. Twenty Arab-Muslim mothers living in Palestine were purposefully recruited from several rehabilitation centers in Palestine and were interviewed in 2014. The transcribed interviews were analyzed according to phenomenological hermeneutics. The mothers' experiences were described in the main theme: From feeling broken to looking beyond broken. Four themes were interwoven: living with constant anxiety, living with uncertainty, living with a burden, and living with a difficult life situation. These findings highlight the burden and resilience of the Arab-Muslim Palestinian mothers while striving to maintain the well-being of the whole family as well as facilitating the child's welfare.

摘要

脊髓裂(SB)是全球范围内第二常见的出生缺陷。由于子女的复杂病情和残疾,患有 SB 的儿童的母亲面临着巨大的挑战。对于这些挑战对母亲福祉的影响,我们知之甚少,特别是在中东文化中,慢性疾病和残疾被视为耻辱,照顾残疾儿童历来是母亲的责任。本研究旨在阐明巴勒斯坦地区患有 SB 的儿童的母亲的生活体验。2014 年,我们从巴勒斯坦的几个康复中心有目的地招募了 20 名阿拉伯裔穆斯林母亲,并对其进行了访谈。转录后的访谈根据现象学解释学进行了分析。母亲们的经历被描述为一个主题:从感觉破碎到超越破碎。四个主题交织在一起:生活在持续的焦虑中、生活在不确定中、生活在负担中以及生活在困难的生活环境中。这些发现突出了阿拉伯裔穆斯林巴勒斯坦母亲的负担和韧性,同时努力维持整个家庭的幸福,并为孩子的福利提供便利。

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