Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families

Nicole van den Dries-Luitwieler; J. Luijkx; H.A.  Van der Steege; Anneke Grootoonk; Cees van der Schans; A.A.J. van der Putten; Aly Waninge

doi:10.1111/jar.13161

Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families

Nicole van den Dries-Luitwieler, J. Luijkx, H.A. Van der Steege, Anneke Grootoonk, Cees van der Schans, A.A.J. van der Putten, Aly Waninge

Rotterdam University of Applied Sciences, Research Centre Innovations in Care, Rotterdam, The Netherlands
University of Groningen, Faculty of Behavioural and Social Sciences, Inclusive and Special Needs Education
University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine
University of Groningen, University Medical Center Groningen, Department of Health Psychology

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

Abstract

Background
For families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD). The aim of this study is to determine its content validity.

Method
A Delphi study with family members and healthcare professionals was conducted.

Results
Results showed good content validity. However, the Delphi panel suggested minor adjustments to improve relevance, comprehensibility and comprehensiveness.

Conclusions
The current SGU-PIMD can be used in practice for supporting adolescents with profound intellectual and multiple disabilities. However, there are also recommendations for research into the feasibility and acceptability of the instrument.

Translated title of the contribution	Transitie naar volwassenheid van adolescenten met ernstige verstandelijke en meervoudige beperkingen: contentvalidering van de Groeiwijzer-EMB ter ondersteuning van gezinnen
Original language	English
Article number	e13161
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	37
Issue number	1
Early online date	4 Oct 2023
DOIs	https://doi.org/10.1111/jar.13161
Publication status	Published - 4 Oct 2023

Keywords

adolescence
adulthood
family quality of life
intellectual disability
multiple profound disabilities
transition

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10.1111/jar.13161

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van den Dries-Luitwieler, N., Luijkx, J., Van der Steege, H. A., Grootoonk, A., van der Schans, C., van der Putten, A. A. J., & Waninge, A. (2023). Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families. Journal of Applied Research in Intellectual Disabilities, 37(1), Article e13161. https://doi.org/10.1111/jar.13161

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title = "Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families",

abstract = "BackgroundFor families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD). The aim of this study is to determine its content validity.MethodA Delphi study with family members and healthcare professionals was conducted.ResultsResults showed good content validity. However, the Delphi panel suggested minor adjustments to improve relevance, comprehensibility and comprehensiveness.ConclusionsThe current SGU-PIMD can be used in practice for supporting adolescents with profound intellectual and multiple disabilities. However, there are also recommendations for research into the feasibility and acceptability of the instrument.",

keywords = "adolescentie, kwaliteit van het gezinsleven, meervoudige ernstige beperkingen, transitie, verstandelijke beperking, volwassenheid, adolescence, adulthood, family quality of life, intellectual disability, multiple profound disabilities, transition",

author = "{van den Dries-Luitwieler}, Nicole and J. Luijkx and {Van der Steege}, H.A. and Anneke Grootoonk and {van der Schans}, Cees and {van der Putten}, A.A.J. and Aly Waninge",

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van den Dries-Luitwieler, N, Luijkx, J, Van der Steege, HA, Grootoonk, A, van der Schans, C, van der Putten, AAJ & Waninge, A 2023, 'Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families', Journal of Applied Research in Intellectual Disabilities, vol. 37, no. 1, e13161. https://doi.org/10.1111/jar.13161

Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families. / van den Dries-Luitwieler, Nicole; Luijkx, J.; Van der Steege, H.A. et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 37, No. 1, e13161, 04.10.2023.

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

TY - JOUR

T1 - Transition to adulthood of adolescents with profound intellectual and multiple disabilities

T2 - Content validation of the SGU-PIMD to support families

AU - van den Dries-Luitwieler, Nicole

AU - Luijkx, J.

AU - Van der Steege, H.A.

AU - Grootoonk, Anneke

AU - van der Schans, Cees

AU - van der Putten, A.A.J.

AU - Waninge, Aly

PY - 2023/10/4

Y1 - 2023/10/4

N2 - BackgroundFor families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD). The aim of this study is to determine its content validity.MethodA Delphi study with family members and healthcare professionals was conducted.ResultsResults showed good content validity. However, the Delphi panel suggested minor adjustments to improve relevance, comprehensibility and comprehensiveness.ConclusionsThe current SGU-PIMD can be used in practice for supporting adolescents with profound intellectual and multiple disabilities. However, there are also recommendations for research into the feasibility and acceptability of the instrument.

AB - BackgroundFor families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD). The aim of this study is to determine its content validity.MethodA Delphi study with family members and healthcare professionals was conducted.ResultsResults showed good content validity. However, the Delphi panel suggested minor adjustments to improve relevance, comprehensibility and comprehensiveness.ConclusionsThe current SGU-PIMD can be used in practice for supporting adolescents with profound intellectual and multiple disabilities. However, there are also recommendations for research into the feasibility and acceptability of the instrument.

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KW - kwaliteit van het gezinsleven

KW - meervoudige ernstige beperkingen

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KW - volwassenheid

KW - adolescence

KW - adulthood

KW - family quality of life

KW - intellectual disability

KW - multiple profound disabilities

KW - transition

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JO - Journal of Applied Research in Intellectual Disabilities

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van den Dries-Luitwieler N, Luijkx J, Van der Steege HA, Grootoonk A, van der Schans C, van der Putten AAJ et al. Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families. Journal of Applied Research in Intellectual Disabilities. 2023 Oct 4;37(1):e13161. Epub 2023 Oct 4. doi: 10.1111/jar.13161

Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families

Abstract

Keywords

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