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中国大陆自闭症谱系障碍儿童家长参与干预经历的叙事分析

Narrative analysis of parents' experiences with participating in the intervention of children on the autism spectrum in mainland China.

作者信息

Liu Xiao-Yu, To Siu-Ming

机构信息

Rainbow Lutheran Centre, Hong Kong Lutheran Social Service, Hong Kong.

Department of Social Work, The Chinese University of Hong Kong, Hong Kong.

出版信息

Disabil Rehabil. 2023 Sep;45(19):3070-3078. doi: 10.1080/09638288.2022.2120098. Epub 2022 Sep 8.

Abstract

PURPOSE

Although the challenges encountered by parents of children on the autism spectrum during the intervention process have garnered scholarly attention, how parents subjectively review those challenges and construct meanings of their experiences remained underexamined. By applying the narrative analysis framework, we investigated the lived experiences of parents of children on the autism spectrum regarding challenges they faced in the intervention process, along with the meanings of those experiences that they constructed in the sociocultural context of mainland China.

METHODS

We purposively sampled 16 parents to narrate their experiences following semistructured interviews. Each participant had one child who had participated in autism intervention for more than two years.

RESULT

The narrative analysis revealed that parents experienced a series of challenges imposed by structural barriers in the intervention process, which resulted in psychological distress and negative perceptions of their parental identities. Albeit susceptible to those adversities, the parents actively constructed new meanings of parenthood and their children's situations through reflexive dialogues.

CONCLUSION

Our results indicate the essential role of meaning-oriented coping in helping parents with children on the autism spectrum to mitigate the negative influence of challenges on their parental identity, strengthen their parent-child relationships, and readjust their priorities for intervention.IMPLICATIONS FOR REHABILITATIONThe role of encouraging new meanings through reflexive dialogues was found to be particularly important among parents with children on the autism spectrum to cope with the challenges they faced in the intervention process.New meanings assigned can mitigate the negative impact of challenges on parents' parental identity, strengthening their parent-child relationships, and readjusting their priorities for intervention within the Chinese socio-cultural context.It is crucial for social workers and other practitioners to support parents in mainland China by facilitating them to assign new meanings to the challenging situations.It is important for social workers and other practitioners to encourage parents to cultivate inner strengths and self-value to support their children on the autism spectrum.

摘要

目的

尽管自闭症谱系障碍儿童的家长在干预过程中遇到的挑战已引起学界关注,但家长如何主观审视这些挑战并构建其经历的意义仍未得到充分研究。通过应用叙事分析框架,我们调查了自闭症谱系障碍儿童家长在干预过程中所面临挑战的生活经历,以及他们在中国大陆社会文化背景下构建的这些经历的意义。

方法

我们有目的地抽取了16位家长,通过半结构化访谈让他们讲述自己的经历。每位参与者都有一个孩子,该孩子已参加自闭症干预两年以上。

结果

叙事分析表明,家长在干预过程中经历了一系列由结构障碍带来的挑战,这导致了心理困扰以及对其父母身份的负面认知。尽管易受这些逆境影响,但家长通过反思性对话积极构建了为人父母及孩子状况的新意义。

结论

我们的结果表明,以意义为导向的应对方式在帮助自闭症谱系障碍儿童的家长减轻挑战对其父母身份的负面影响、加强亲子关系以及重新调整干预重点方面起着至关重要的作用。

对康复的启示

通过反思性对话鼓励新意义的作用在自闭症谱系障碍儿童的家长应对干预过程中所面临的挑战时尤为重要。

在中国社会文化背景下,赋予的新意义可以减轻挑战对家长父母身份的负面影响,加强亲子关系,并重新调整他们的干预重点。

对中国大陆的社会工作者和其他从业者来说,通过促使家长为具有挑战性的情况赋予新意义来支持他们至关重要。

对社会工作者和其他从业者来说,鼓励家长培养内在力量和自我价值以支持自闭症谱系障碍的孩子很重要。

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