{"title":"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？","authors":"Jakub Niedbalski","doi":"10.3109/13668250.2024.2419412","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Method: </strong>Semi-structured interviews were conducted with siblings of people with PMID. The interviews were subjected to thematic analysis according to grounded theory methodology principles.</p><p><strong>Findings: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"50 2","pages":"221-234"},"PeriodicalIF":1.2000,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"What is it like to be a twin of a person with profound intellectual and multiple disabilities?\",\"authors\":\"Jakub Niedbalski\",\"doi\":\"10.3109/13668250.2024.2419412\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>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.</p><p><strong>Method: </strong>Semi-structured interviews were conducted with siblings of people with PMID. The interviews were subjected to thematic analysis according to grounded theory methodology principles.</p><p><strong>Findings: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":51466,\"journal\":{\"name\":\"Journal of Intellectual & Developmental Disability\",\"volume\":\"50 2\",\"pages\":\"221-234\"},\"PeriodicalIF\":1.2000,\"publicationDate\":\"2025-06-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Intellectual & Developmental Disability\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.3109/13668250.2024.2419412\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/10/24 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"EDUCATION, SPECIAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Intellectual & Developmental Disability","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.3109/13668250.2024.2419412","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/10/24 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
What is it like to be a twin of a person with profound intellectual and multiple disabilities?
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.
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.
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