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简短报告:神经发育障碍儿童的兄弟姐妹,父母感知的现象学视角。

Short report: Siblings of children with neurodevelopmental disorders, a phenomenological perspective on parental perception.

机构信息

Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy.

Developmental Psychobiology Lab, IRCCS Mondino Foundation, Pavia, Italy.

出版信息

Res Dev Disabil. 2024 Jan;144:104654. doi: 10.1016/j.ridd.2023.104654. Epub 2023 Dec 14.

Abstract

BACKGROUND

Siblings, typically developing brothers and sisters of children with neurodevelopmental disorders (NDD), are at risk for long-term psychosocial difficulties.

OBJECTIVE

The present study aims at obtaining an in-depth insight on the lived experience of siblings of children with NDD through their parents' perspective.

METHODS

Seven mothers and three fathers who signed up their sibling children (12-15 years) to a peer-support intervention participated in a semi-structured videoconference interview according to the Interpretative Phenomenological Analysis (IPA) qualitative approach. Interviews were conducted by trained personnel and independently coded.

RESULTS

Thematic analysis highlighted three core themes and twelve sub-themes: "The complexity of the fraternal relationship" (three sub-themes), "Growing up with diversity" (six sub-themes), and "Me as a sibling" (three sub-themes).

CONCLUSIONS

The study provides insight on parents' perception of the lived experience of their sibling children, thus spreading awareness on the everyday difficulties families with a child with NDD may encounter.

WHAT THIS PAPER ADDS

The present study contributes to the scarce literature on the lived experience of siblings of children with NDD, and notably it is one of the few qualitative studies on the topic which makes use of an IPA interviewing style. This methodological choice allowed for an in-depth understanding of siblings' strengths and struggles as perceived by their own parents, and of how their brother/sister's condition impacted on their family role, socio-emotional development and personality. Recounting siblings' experiences contributes in spreading awareness on the everyday difficulties siblings and their families face when cohabitating with a child with NDD.

摘要

背景

患有神经发育障碍 (NDD) 的儿童的兄弟姐妹通常是发育正常的,他们存在长期心理社会困难的风险。

目的

本研究旨在从父母的角度深入了解 NDD 儿童兄弟姐妹的生活体验。

方法

七名母亲和三名父亲为其兄弟姐妹(12-15 岁)报名参加了同伴支持干预,他们根据解释性现象学分析 (IPA) 定性方法参加了半结构化视频会议访谈。访谈由经过培训的人员进行,并进行独立编码。

结果

主题分析突出了三个核心主题和十二个子主题:“兄弟关系的复杂性”(三个子主题)、“在多样性中成长”(六个子主题)和“作为兄弟姐妹的我”(三个子主题)。

结论

该研究深入了解了父母对其兄弟姐妹生活体验的看法,从而提高了对 NDD 儿童家庭日常困难的认识。

本文的贡献

本研究丰富了关于 NDD 儿童兄弟姐妹生活体验的文献,特别是它是少数使用 IPA 访谈风格的关于该主题的定性研究之一。这种方法选择使我们能够深入了解兄弟姐妹的父母对兄弟姐妹的优势和挣扎的看法,以及他们的兄弟姐妹的状况如何影响他们的家庭角色、社会情感发展和个性。讲述兄弟姐妹的经历有助于提高对兄弟姐妹和他们的家庭在与 NDD 儿童共同生活时所面临的日常困难的认识。

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