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用他们自己的话来说:母亲们讲述了养育患有发育障碍且行为具有社会破坏性的孩子的亲身经历。

In Their Own Words: Mothers Narrate the Lived Experience of Raising Children with Developmental Disorders Who Engage in Socially Disruptive Conduct.

机构信息

Department of Occupational Therapy, Quinnipiac University, North Haven Campus, Hamden, CT, 06473, USA.

, 14 Frazier Road, Hamden, CT, 06518, USA.

出版信息

J Autism Dev Disord. 2023 Aug;53(8):3272-3279. doi: 10.1007/s10803-022-05578-z. Epub 2022 Jun 8.

Abstract

The occupational role of a mother parenting a child with developmental and socially disruptive conduct is unique. How mothers express their experiences is poorly explored in the literature. This study aims to better understand mothers' description of their unique experiences in order to better inform interventions. Using a narrative inquiry approach, mothers convey unique stressors related to two central themes (role fulfillment and role support) during a journal writing intervention. Studying mothers' own words as they attempted to make sense of their experiences aligns with the foundational principles of narrative medicine: People make sense of their experiences through storytelling. Knowledge gained from this research underscores the importance of centering a mother's voice in order to create effective interventions.

摘要

母亲养育有发育和社交障碍行为的孩子的职业角色是独特的。母亲如何表达自己的经验在文献中研究甚少。本研究旨在更好地理解母亲对其独特经验的描述,以便更好地为干预措施提供信息。通过叙述性探究方法,母亲在日记写作干预中传达了与两个核心主题(角色实现和角色支持)相关的独特压力源。研究母亲在试图理解自己的经验时自己的话语,符合叙事医学的基本原则:人们通过讲故事来理解自己的经验。从这项研究中获得的知识强调了将母亲的声音置于中心的重要性,以创建有效的干预措施。

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本文引用的文献

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Children with autism: quality of life and parental concerns.自闭症儿童:生活质量与家长关切
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