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"正常"和"失常"的母亲:多发性硬化症患者女性对母性主体身份的构建。

'Normal' and 'failing' mothers: Women's constructions of maternal subjectivity while living with multiple sclerosis.

机构信息

Western Sydney University, Australia.

出版信息

Health (London). 2019 Sep;23(5):516-532. doi: 10.1177/1363459317739442. Epub 2017 Nov 1.

Abstract

Multiple sclerosis causes physical and cognitive impairment that can impact women's experiences of motherhood. This study examined how women construct their maternal subjectivities, or sense of self as a mother, drawing on a framework of biographical disruption. A total of 20 mothers with a multiple sclerosis diagnosis took part in semi-structured interviews. Transcripts were analysed using thematic decomposition to identify subject positions that women adopted in relation to cultural discourses of gender, motherhood and illness. Three main subject positions were identified: 'The Failing Mother', 'Fear of Judgement and Burdening Others' and 'The Normal Mother'. Women's sense of self as the 'Failing Mother' was attributed to the impact of multiple sclerosis, contributing to biographical disruption and reinforced through 'Fear of Judgement and Burdening Others' within social interactions. In accounts of the 'Normal Mother', maternal subjectivity was renegotiated by adopting strategies to manage the limitations of multiple sclerosis on mothering practice. This allowed women to self-position as 'good' mothers. Health professionals can assist women by acknowledging the embodied impact of multiple sclerosis on maternal subjectivities, coping strategies that women employ to address potential biographical disruption, and the cultural context of mothering, which contributes to women's experience of subjectivity and well-being when living with multiple sclerosis.

摘要

多发性硬化症会导致身体和认知功能障碍,从而影响女性的母性体验。本研究通过传记性破坏的框架,考察了女性如何构建其母性主体,即作为母亲的自我意识。共有 20 名多发性硬化症诊断患者参与了半结构化访谈。使用主题分解对转录本进行分析,以确定女性在性别、母性和疾病的文化话语中所采用的主体位置。确定了三个主要的主体位置:“失败的母亲”、“害怕评判和连累他人”和“正常的母亲”。女性作为“失败的母亲”的自我意识归因于多发性硬化症的影响,导致传记性破坏,并通过社交互动中的“害怕评判和连累他人”得到强化。在“正常母亲”的描述中,通过采用管理多发性硬化症对育儿实践的限制的策略,重新协商了母性主体。这使女性能够自我定位为“好”母亲。卫生专业人员可以通过承认多发性硬化症对母性主体的身体影响、女性为应对潜在传记性破坏而采用的应对策略,以及育儿的文化背景,来帮助女性,这些因素有助于女性在患有多发性硬化症时体验主体性和幸福感。

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