Siblings' and Parents' Perspectives on the Future Care for Their Family Member with Profound Intellectual and Multiple Disabilities: A Qualitative Study

Kasper Kruithof, Lisa IJzerman, Appolonia M. Nieuwenhuijse, Sylvia Huisman, Alice Schippers, Dick Willems, E. Olsman

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    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.
    Original languageEnglish
    Pages (from-to)351-361
    Number of pages11
    JournalJournal of Intellectual and Developmental Disability
    Issue number4
    Publication statusPublished - 2021

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