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.
  
  
  OBJECTIVE
  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.affiliation: Royal Dutch Visio-de Brink, Vries, The Netherlands. Electronic address: ginekehanzen@visio.org.
authors.forename: Gineke
authors.initials: G
authors.lastname: Hanzen
authors.affiliation: Department of ophthalmology and EMGO+ Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Ruth M A
authors.initials: RM
authors.lastname: van Nispen
authors.affiliation: 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.
authors.forename: Annette A J
authors.initials: AA
authors.lastname: van der Putten
authors.affiliation: Royal Dutch Visio-de Brink, Vries, The Netherlands; Research group Healthy Ageing, Allied Health Care and Nursing, Hanzehogeschool Groningen, The Netherlands.
authors.forename: Aly
authors.initials: A
authors.lastname: Waninge
mesh_terms: D001294:Attitude to Health; D003142:Communication; D005190:Family; D006282:Health Personnel; D006801:Humans; D008607:Intellectual Disability; D007899:Leisure Activities; D009426:Netherlands; D026684:Personal Autonomy; D011998:Recreation; D012648:Self Care; D012720:Severity of Illness Index; D058992:Social Participation; D014786:Vision Disorders
keywords: Concept mapping; Participation; Severe or profound intellectual disabilities; Visual disability