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 L. 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 8 parents and 13 siblings of 7 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
    JournalJournal of Intellectual and Developmental Disability
    Publication statusPublished - 2021

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