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

*Corresponding author for this work

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
Number of pages13
JournalResearch in Developmental Disabilities
Volume61
DOIs
Publication statusPublished - 1 Feb 2017

Cite this