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作为一个有严重智力障碍和多重残疾的人的双胞胎是什么样的体验?

What is it like to be a twin of a person with profound intellectual and multiple disabilities?

作者信息

Niedbalski Jakub

机构信息

Institute of Sociology, Faculty of Economics and Sociology, University of Łódź, Lodz, Poland.

出版信息

J Intellect Dev Disabil. 2025 Jun;50(2):221-234. doi: 10.3109/13668250.2024.2419412. Epub 2024 Oct 24.

Abstract

BACKGROUND

The aim of this study was to establish the perceived quality of life in twin siblings of individuals with profound intellectual and multiple disabilities (PIMD) living in Poland.

METHOD

Semi-structured interviews were conducted with siblings of people with PMID. The interviews were subjected to thematic analysis according to grounded theory methodology principles.

FINDINGS

The results of this study yielded insights into the quality of life of twin siblings of persons with profound intellectual and multiple disabilities. Inquired about their lives in the capacity of siblings, the interviewees provided a narrative around their experiences as twins of individuals with PIMD.

CONCLUSION

Research participants described both positive and negative experiences, indicating that having a sibling with profound intellectual and multiple disabilities affected their quality of life in diverse ways. In addition, the obtained results may be of cognitive merit to practitioners and researchers working with families of people with PIMD.

摘要

背景

本研究的目的是确定生活在波兰的重度智力和多重残疾(PIMD)患者的双胞胎兄弟姐妹所感知到的生活质量。

方法

对PIMD患者的兄弟姐妹进行了半结构化访谈。访谈根据扎根理论方法原则进行主题分析。

结果

本研究的结果揭示了重度智力和多重残疾患者的双胞胎兄弟姐妹的生活质量。当被问及以兄弟姐妹的身份的生活时,受访者讲述了他们作为PIMD患者双胞胎的经历。

结论

研究参与者描述了积极和消极的经历,表明有一个重度智力和多重残疾的兄弟姐妹以多种方式影响了他们的生活质量。此外,所获得的结果可能对与PIMD患者家庭合作的从业者和研究人员具有认知价值。

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