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ERIC Number: EJ1318207
Record Type: Journal
Publication Date: 2021
Pages: 11
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1366-8250
EISSN: N/A
Available Date: N/A
Siblings' and Parents' Perspectives on the Future Care for Their Family Member with Profound Intellectual and Multiple Disabilities: A Qualitative Study
Kruithof, Kasper; IJzerman, Lisa; Nieuwenhuijse, Appolonia; Huisman, Sylvia; Schippers, Alice; Willems, Dick; Olsman, Erik
Journal of Intellectual & Developmental Disability, v46 n4 p351-361 2021
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.
Taylor & Francis. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Publication Type: Journal Articles; Reports - Research; Tests/Questionnaires
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Netherlands
Grant or Contract Numbers: N/A
Author Affiliations: N/A