Siblings' and parents' perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study
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Updated: May 1, 2026

Assessing the Coherence of Parents' Short Narratives Regarding their Child Using the Five-Minute Speech Sample Procedure
Published on: September 19, 2019
Kasper Kruithof1, Lisa IJzerman2, Appolonia Nieuwenhuijse1,3
1Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.
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.
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