K. Kruithof, E. Olsman, A. Nieuwenhuijse, D. Willems
{"title":"“我希望我能比他活得更久”:一项关于父母担心自己患有严重智力残疾和多重残疾的孩子比自己活得更久的定性研究","authors":"K. Kruithof, E. Olsman, A. Nieuwenhuijse, D. Willems","doi":"10.3109/13668250.2021.1920377","DOIUrl":null,"url":null,"abstract":"ABSTRACT Background The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents’ concerns about being outlived by their child. Results Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents’ concerns and sometimes resulted in feelings of despair. Conclusions Our study provides insight into the nature and gravity of parents’ concerns. The division of parents’ concerns into roles helps to address future care and support gaps for people with PIMD.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"107 - 117"},"PeriodicalIF":1.9000,"publicationDate":"2021-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"13","resultStr":"{\"title\":\"“I hope I’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities\",\"authors\":\"K. Kruithof, E. Olsman, A. Nieuwenhuijse, D. Willems\",\"doi\":\"10.3109/13668250.2021.1920377\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"ABSTRACT Background The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents’ concerns about being outlived by their child. Results Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents’ concerns and sometimes resulted in feelings of despair. Conclusions Our study provides insight into the nature and gravity of parents’ concerns. The division of parents’ concerns into roles helps to address future care and support gaps for people with PIMD.\",\"PeriodicalId\":51466,\"journal\":{\"name\":\"Journal of Intellectual & Developmental Disability\",\"volume\":\"47 1\",\"pages\":\"107 - 117\"},\"PeriodicalIF\":1.9000,\"publicationDate\":\"2021-06-02\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"13\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Intellectual & Developmental Disability\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.3109/13668250.2021.1920377\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"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/10.3109/13668250.2021.1920377","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
“I hope I’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities
ABSTRACT Background The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents’ concerns about being outlived by their child. Results Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents’ concerns and sometimes resulted in feelings of despair. Conclusions Our study provides insight into the nature and gravity of parents’ concerns. The division of parents’ concerns into roles helps to address future care and support gaps for 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.