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

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

University of Groningen, University Medical Center Groningen, Department of Health Science, Health Psychology Section
University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine
University of Groningen, Department of Inclusive and Special Needs Education

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

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.

Translated title of the contribution	De rol van volwassen broers en zussen van mensen met een ernstige verstandelijke beperking
Original language	English
Pages (from-to)	1308-1318
Number of pages	11
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	36
Issue number	6
DOIs	https://doi.org/10.1111/jar.13149
Publication status	Published - 7 Aug 2023

Keywords

family
multiple disabilities
profound intellectual disability
siblings
support

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

Cite this

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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.",

keywords = "broers of zussen, ernstige verstandelijke handicap, familie, meervoudige handicaps, steun, family, multiple disabilities, profound intellectual disability, siblings, support",

author = "Naomi Dorsman and Aly Waninge and {van der Schans}, Cees and Jorien Luijkx and {Van der Putten}, {Annette A. J.}",

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AU - Dorsman, Naomi

AU - Waninge, Aly

AU - van der Schans, Cees

AU - Luijkx, Jorien

AU - Van der Putten, Annette A. J.

PY - 2023/8/7

Y1 - 2023/8/7

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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KW - meervoudige handicaps

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

Abstract

Keywords

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