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“宛如家中出现了超自然现象”:一项诠释现象学分析,旨在探究抚养自闭症谱系障碍儿童的家长的经历及心理挑战

"Like something supernatural in your house": an interpretative phenomenological analysis to explore the experiences and psychological challenges of parents raising children with autism spectrum disorder.

作者信息

Yevtushok Tetiana, Petronzi Dominic

机构信息

University of Derby, Kedleston Road, Derby, Derbyshire, DE22 1GB, UK.

School of Psychology, University of Derby, Derby, UK.

出版信息

BMC Psychol. 2025 Jul 1;13(1):642. doi: 10.1186/s40359-025-03057-5.

Abstract

BACKGROUND

Parents raising children with ASD face profound psychological challenges. While existing research predominantly focuses on parental distress, opportunities for growth and transformation remain underexplored. Addressing these gaps, this study employs an existential framework and Interpretative Phenomenological Analysis to provide a nuanced understanding of parental psychological experiences, emphasizing how they navigate and transcend the challenges of raising a child with ASD.

METHODS

Semi-structured interviews were conducted with four parents (three mothers and one father) of children diagnosed with ASD for at least three years. Participants ranged in age from 31 to 50 years, while their children, all male, were aged 11 to 22 years. The participants represented diverse geographic backgrounds, including Canada, the United Arab Emirates, the United Kingdom, and the United States.

RESULTS

The analysis identified two superordinate themes: "From Existential Crisis to Enlightenment" and "Transcending Challenging Experiences." Participants initially experienced an emotional breakdown following their child's diagnosis, marked by grief and uncertainty. Over time, they transitioned from despair to faith, cultivating acceptance and spiritual beliefs as essential coping mechanisms. They also confronted significant emotional challenges, including guilt, fear of death, and communication struggles, ultimately fostering resilience and forming transcendent relationships with their children.

CONCLUSIONS

The findings illuminate the dual dimensions of the parental experience, encompassing both distress and growth. This study offers deeper insights into the emotional and existential aspects of parenting a child with ASD and underscores the need for tailored interventions to support parents in navigating these transformative journeys.

摘要

背景

抚养患有自闭症谱系障碍(ASD)孩子的父母面临着巨大的心理挑战。虽然现有研究主要关注父母的痛苦,但成长和转变的机会仍未得到充分探索。为了填补这些空白,本研究采用了一种存在主义框架和解释现象学分析方法,以细致入微地理解父母的心理体验,强调他们如何应对并超越抚养患有ASD孩子的挑战。

方法

对四名孩子被诊断患有ASD至少三年的父母(三名母亲和一名父亲)进行了半结构化访谈。参与者年龄在31岁至50岁之间,而他们的孩子均为男性,年龄在11岁至22岁之间。参与者代表了不同的地理背景,包括加拿大、阿拉伯联合酋长国、英国和美国。

结果

分析确定了两个上位主题:“从存在危机到启迪”和“超越挑战经历”。参与者在孩子被诊断后最初经历了情绪崩溃,其特征是悲伤和不确定性。随着时间的推移,他们从绝望转变为信念,培养接受和精神信仰作为重要的应对机制。他们还面临着重大的情感挑战,包括内疚、对死亡的恐惧和沟通困难,最终培养了复原力,并与孩子建立了超越的关系。

结论

研究结果揭示了父母经历的双重维度,包括痛苦和成长。本研究为抚养患有ASD孩子的父母的情感和存在方面提供了更深入的见解,并强调需要有针对性的干预措施来支持父母度过这些转变之旅。

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本文引用的文献

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Neurodiversity: An insider's perspective.神经多样性:局内人的视角。
Autism. 2019 Feb;23(2):271-273. doi: 10.1177/1362361318820762. Epub 2018 Dec 17.

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