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描绘父母向孩子透露自闭症诊断所面临的困境。

Mapping the Dilemmas Parents Face with Disclosing Autism Diagnosis to their Child.

机构信息

Disability and accessibility Studies program, Department of Education and Societal Studies, Ono Academic College, Tzahal st. 104, 5545173, Kiryat Ono, Israel.

Department of Communication Disorders, Ono Academic College, Tzahal st. 104, 5545173, Kiryat Ono, Israel.

出版信息

J Autism Dev Disord. 2023 Oct;53(10):4060-4075. doi: 10.1007/s10803-022-05711-y. Epub 2022 Aug 11.

Abstract

The diagnosis of autism is often delivered solely to the parents, a practice that forces them to confront the dilemma of whether, when and how they should disclose it to the child. The present study seeks to probe deeper into the phenomenon of diagnosis disclosure and lead to a clearer understanding of the dilemmas parents? face. This article presents an analysis of a focus group and an online survey conducted with parents. The analysis produced a model that maps parents' dilemmas regarding diagnosis disclosure to their child. The dilemmas, found to be complex and interconnected, concern the invisible nature of autism, the word autism and stigma, time motif, child's environment, the act of disclosure itself, and the child's personal narrative.

摘要

自闭症的诊断通常仅向父母传达,这种做法迫使他们面对是否、何时以及如何向孩子透露诊断结果的困境。本研究旨在更深入地探究诊断披露现象,并更清楚地了解父母所面临的困境。本文呈现了对与父母进行的焦点小组和在线调查的分析。分析产生了一个将父母的诊断披露困境与其孩子相关联的模型。这些被发现是复杂且相互关联的困境,涉及自闭症的无形性质、自闭症这个词和污名、时间主题、孩子的环境、披露行为本身以及孩子的个人叙事。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7237/9366808/351780731745/10803_2022_5711_Fig1_HTML.jpg

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