Gineke Hanzen1, Ruth M A van Nispen2, Annette A J van der Putten3, Aly Waninge4. 1. Royal Dutch Visio-de Brink, Vries, The Netherlands. Electronic address: ginekehanzen@visio.org. 2. Department of ophthalmology and EMGO+ Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. 3. Faculty of Behavioural and Social Sciences, department of Pedagogy and Educational Sciences, unit of special needs education and youth care, University of Groningen, The Netherlands. 4. Royal Dutch Visio-de Brink, Vries, The Netherlands; Research group Healthy Ageing, Allied Health Care and Nursing, Hanzehogeschool Groningen, The Netherlands.
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.
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.
Authors: Gineke Hanzen; Ruth M A van Nispen; Carla Vlaskamp; Eliza L Korevaar; Aly Waninge; Annette A J van der Putten Journal: BMC Health Serv Res Date: 2020-04-16 Impact factor: 2.655
Authors: Gineke Hanzen; Aly Waninge; Ruth M A van Nispen; Carla Vlaskamp; Wendy J Post; Annette A J van der Putten Journal: J Appl Res Intellect Disabil Date: 2020-08-13