Participation of adults with visual and severe or profound intellectual disabilities: Definition and operationalization.
Use the seven-cluster participation framework to assess and plan engagement for adults with visual and profound ID.
01Research in Context
What this study did
Hanzen et al. (2017) ran an online concept-mapping project. They asked 53 stakeholders—caregivers, staff, and experts—to sort ideas about what 'participation' means for adults who are blind and have severe or profound intellectual disabilities. After statistical clustering, the team ended up with seven clear participation themes.
What they found
The seven themes form a practical framework: experience, inclusion, involvement, leisure, communication, social relations, and self-management. Together they give a common language for spotting where adults with visual and profound ID are engaged or left out.
How this fits with other research
The work extends Austin et al. (2015). That earlier Delphi study created 118 quality-of-life items for adults with severe ID; Gineke zooms in on the narrower visual-and-profound group and supplies a participation lens rather than a QOL one.
Lanza et al. (2024) pull the camera back. Their 2024 scoping review shows vision loss lowers participation across 69 studies of children. Gineke’s seven-cluster map can now be tested within that wider age range.
Maciver et al. (2020) offer a ready-made tool. Their School Participation Questionnaire works for elementary kids with disabilities. A BCBA could adapt its 46 items to mirror Gineke’s seven adult clusters, bridging school and adult services.
Why it matters
You now have a stakeholder-approved checklist instead of guessing what participation looks like. Use the seven themes to write goals, pick assessments, and train staff. If an adult with visual and profound ID can’t access leisure, you have a concrete domain to target and a language the whole team already understands.
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02At a glance
03Original 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.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2016.12.017