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

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. To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their famil...

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Bibliographic Details
Published in:Journal of intellectual & developmental disability 2021-10, Vol.46 (4), p.351-361
Main Authors: Kruithof, Kasper, IJzerman, Lisa, Nieuwenhuijse, Appolonia, Huisman, Sylvia, Schippers, Alice, Willems, Dick, Olsman, Erik
Format: Article
Language:English
Subjects:
ageing
Attitudes
Caregivers
Communication
disability
Expectation
Foreign Countries
future care planning
Intellectual disabilities
Interpersonal Communication
Life expectancy
Multiple Disabilities
Multiply disabled people
Parent Attitudes
parents
Parents & parenting
PIMD
Qualitative research
Readiness
Responsibility
Role
Severe Intellectual Disability
Siblings
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Summary: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. 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. 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. 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.
ISSN:1366-8250
1469-9532
DOI:10.3109/13668250.2021.1892261