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.

中文翻译：

---

兄弟姐妹和父母对未来照顾患有严重智力和多重残疾的家庭成员的看法：一项定性研究

摘要

背景

由于患有严重智力障碍和多重残疾 (PIMD) 的人的预期寿命越来越长，兄弟姐妹可能会从父母那里接过照顾/支持的角色。

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角色，我们采访了 7 名 PIMD 患者的 8 位父母和 13 名兄弟姐妹，并主题分析了数据。

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期待这样的角色，并且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没有做好准备。

结论

明确的家庭沟通可能会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。