Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study

IF 1.9 4区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual & Developmental Disability Pub Date : 2021-04-23 DOI:10.3109/13668250.2021.1892261

K. Kruithof, Lisa IJzerman, A. Nieuwenhuijse, S. Huisman, A. Schippers, D. Willems, E. Olsman

{"title":"Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study","authors":"K. Kruithof, Lisa IJzerman, A. Nieuwenhuijse, S. Huisman, A. Schippers, D. Willems, E. Olsman","doi":"10.3109/13668250.2021.1892261","DOIUrl":null,"url":null,"abstract":"ABSTRACT Background Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.9000,"publicationDate":"2021-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"9","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Intellectual & Developmental Disability","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.3109/13668250.2021.1892261","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}

引用次数: 9

Abstract

ABSTRACT Background Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden.

查看原文本刊更多论文

兄弟姐妹与父母对重度智障与多重智障家庭成员未来照护的看法:一项质性研究

摘要背景由于患有严重智力和多重残疾（PIMD）的人的预期寿命正在增加，兄弟姐妹可能会接替父母的照顾/支持角色。方法为了探讨PIMD患者的父母和兄弟姐妹如何看待兄弟姐妹在未来照顾/支持其家庭成员方面的作用，我们采访了7名PIMD患者中的8名父母和13名兄弟姐妹，并按主题分析了数据。结果虽然一些父母预计未来的照顾/支持角色会给兄弟姐妹带来不公平的负担，但大多数兄弟姐妹都预料到了这样的角色，并表示对未来的责任没有任何担忧。尽管缺乏明确的沟通，但父母和兄弟姐妹对未来责任的期望是一致的。然而，一些兄弟姐妹提到，缺乏明确的沟通让他们对未来毫无准备。结论明确的家庭沟通可以使兄弟姐妹对未来更有准备，并减少父母和兄弟姐妹对预期未来负担的看法之间的差异。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

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.