Participation of adults with visual and severe or profound intellectual disabilities: definition and operationalization

Gineke Hanzen, Ruth M A van Nispen, Annette A J van der Putten, Aly Waninge

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

BACKGROUND: The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID.

AIMS: The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID.

METHODS: Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation.

RESULTS: A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters.

CONCLUSIONS: The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.

Original languageEnglish
Pages (from-to)95-107
JournalResearch in developmental disabilities
Volume61
DOIs
Publication statusPublished - Feb 2017

Keywords

  • visual disabilities
  • intellectual disability
  • adults
  • participation

Cite this

@article{1c043bb92d0e470ebbcfa8364ed0afd9,
title = "Participation of adults with visual and severe or profound intellectual disabilities: definition and operationalization",
abstract = "BACKGROUND: The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID.AIMS: The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID.METHODS: Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation.RESULTS: A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters.CONCLUSIONS: The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.",
keywords = "visual disabilities, intellectual disability, adults, participation, visueel gehandicapten, verstandelijk gehandicapten, volwassenen, participatie",
author = "Gineke Hanzen and {van Nispen}, {Ruth M A} and {van der Putten}, {Annette A J} and Aly Waninge",
note = "Copyright {\circledC} 2016 Elsevier Ltd. All rights reserved.",
year = "2017",
month = "2",
doi = "10.1016/j.ridd.2016.12.017",
language = "English",
volume = "61",
pages = "95--107",
journal = "Research in developmental disabilities",
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Participation of adults with visual and severe or profound intellectual disabilities : definition and operationalization. / Hanzen, Gineke; van Nispen, Ruth M A; van der Putten, Annette A J; Waninge, Aly.

In: Research in developmental disabilities, Vol. 61, 02.2017, p. 95-107.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Participation of adults with visual and severe or profound intellectual disabilities

T2 - definition and operationalization

AU - Hanzen, Gineke

AU - van Nispen, Ruth M A

AU - van der Putten, Annette A J

AU - Waninge, Aly

N1 - Copyright © 2016 Elsevier Ltd. All rights reserved.

PY - 2017/2

Y1 - 2017/2

N2 - BACKGROUND: The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID.AIMS: The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID.METHODS: Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation.RESULTS: A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters.CONCLUSIONS: The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.

AB - BACKGROUND: The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID.AIMS: The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID.METHODS: Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation.RESULTS: A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters.CONCLUSIONS: The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.

KW - visual disabilities

KW - intellectual disability

KW - adults

KW - participation

KW - visueel gehandicapten

KW - verstandelijk gehandicapten

KW - volwassenen

KW - participatie

UR - http://www.mendeley.com/research/participation-adults-visual-severe-profound-intellectual-disabilities-definition-operationalization

U2 - 10.1016/j.ridd.2016.12.017

DO - 10.1016/j.ridd.2016.12.017

M3 - Article

VL - 61

SP - 95

EP - 107

JO - Research in developmental disabilities

JF - Research in developmental disabilities

SN - 0891-4222

ER -