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

Duurzame ontwikkelingsdoelstellingen van de VN

Deze output draagt bij aan de volgende duurzame ontwikkelingsdoelstelling(en)

SDG 03 – Goede gezondheid en welzijn
SDG 17 Partnerschap om de doelen te bereiken

Keywords

broers of zussen
ernstige verstandelijke handicap
familie
meervoudige handicaps
steun

Research Focus Areas Hanze University of Applied Sciences

Healthy Ageing

Research Focus Areas Research Centre or Centre of Expertise

Gezonde leefstijl en leefomgeving
Kwetsbaarheid en passende zorg

Publinova thema's

Overig
Recreatie, Beweging & Sport
Gezondheid
Mens en Maatschappij

Toegang tot document

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

Citeer dit

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

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.",

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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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doi = "10.1111/jar.13149",

language = "English",

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journal = "Journal of Applied Research in Intellectual Disabilities",

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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 - 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.

AB - 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.

KW - broers of zussen

KW - ernstige verstandelijke handicap

KW - familie

KW - meervoudige handicaps

KW - steun

KW - family

KW - multiple disabilities

KW - profound intellectual disability

KW - siblings

KW - support

U2 - 10.1111/jar.13149

DO - 10.1111/jar.13149

M3 - Article

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JO - Journal of Applied Research in Intellectual Disabilities

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

Samenvatting

Duurzame ontwikkelingsdoelstellingen van de VN

Keywords

Research Focus Areas Hanze University of Applied Sciences

Research Focus Areas Research Centre or Centre of Expertise

Publinova thema's

Toegang tot document

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Citeer dit