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

IF 1.2 4区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual & Developmental Disability Pub Date : 2025-06-01 Epub Date: 2024-10-24 DOI:10.3109/13668250.2024.2419412

Jakub Niedbalski

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引用次数: 0

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.

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作为一个有严重智力残疾和多重残疾的人的双胞胎是什么感觉？

背景：本研究的目的是建立生活在波兰的重度智力和多重残疾（PIMD）个体的孪生兄弟姐妹的感知生活质量。方法：对PMID患者的兄弟姐妹进行半结构化访谈。根据扎根理论方法论原则，对访谈进行专题分析。研究结果：这项研究的结果对患有严重智力残疾和多重残疾的双胞胎兄弟姐妹的生活质量产生了深刻的见解。当被问及他们作为兄弟姐妹的生活时，受访者讲述了他们作为PIMD患者的双胞胎的经历。结论：研究参与者描述了积极和消极的经历，表明有一个严重智力残疾和多重残疾的兄弟姐妹以不同的方式影响他们的生活质量。此外，获得的结果可能对与PIMD患者家庭一起工作的从业者和研究人员具有认知价值。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Intellectual & Developmental Disability Multiple-

CiteScore

3.40

自引率

7.70%

发文量

期刊介绍： Journal of Intellectual & Developmental Disability (formerly the Australia and New Zealand Journal of Developmental Disabilities) is the official journal of the Australasian Society for the Study of Intellectual Disability (ASSID). JIDD is an international, multidisciplinary journal in the field of intellectual and developmental disability. The journal publishes original qualitative and quantitative research papers, literature reviews, conceptual articles, brief reports, case reports, data briefs, and opinions and perspectives.