The roles of adult siblings of individuals with a profound intellectual disability

Naomi  Dorsman; Aly Waninge; Cees van der Schans; Jorien Luijkx; Annette A. J.  Van der Putten

doi:10.1111/jar.13149

The roles of adult siblings of individuals with a profound intellectual disability

Vertaalde titel van de bijdrage: De rol van volwassen broers en zussen van mensen met een ernstige verstandelijke beperking

Naomi Dorsman, Aly Waninge, Cees van der Schans, Jorien Luijkx, Annette A. J. Van der Putten

Rijksuniversiteit Groningen, Universitair Medisch Centrum Groningen, Afdeling Gezondheidswetenschappen, Sectie Gezondheidspsychologie
Rijksuniversiteit Groningen, Universitair Medisch Centrum Groningen, Centrum voor Revalidatie
University of Groningen, Department of Inclusive and Special Needs Education

Onderzoeksoutput: Article › Academic › peer review

Samenvatting

Background
Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume.

Method
We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire.

Results
Most participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden.

Conclusions
Adult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration.

Vertaalde titel van de bijdrage	De rol van volwassen broers en zussen van mensen met een ernstige verstandelijke beperking
Originele taal-2	English
Pagina's (van-tot)	1308-1318
Aantal pagina's	11
Tijdschrift	Journal of Applied Research in Intellectual Disabilities
Volume	36
Nummer van het tijdschrift	6
DOI's	https://doi.org/10.1111/jar.13149
Status	Published - 7 aug. 2023

Keywords

broers of zussen
ernstige verstandelijke handicap
familie
meervoudige handicaps
steun

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10.1111/jar.13149Licentie: CC BY-NC-ND

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title = "The roles of adult siblings of individuals with a profound intellectual disability",

abstract = "BackgroundAdult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume.MethodWe examined these roles among 58 participants from the Netherlands, who completed an online questionnaire.ResultsMost participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden.ConclusionsAdult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration.",

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AU - Waninge, Aly

AU - van der Schans, Cees

AU - Luijkx, Jorien

AU - Van der Putten, Annette A. J.

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N2 - BackgroundAdult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume.MethodWe examined these roles among 58 participants from the Netherlands, who completed an online questionnaire.ResultsMost participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden.ConclusionsAdult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration.

AB - BackgroundAdult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume.MethodWe examined these roles among 58 participants from the Netherlands, who completed an online questionnaire.ResultsMost participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden.ConclusionsAdult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration.

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The roles of adult siblings of individuals with a profound intellectual disability

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Keywords

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