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Lopend onderzoek: Voorstelling van het onderzoek over de periode april 2007 – juni 2011.Koninklijke Visio, locatie De Brink is een expertisecentrum dat gespecialiseerd is in de zorg- en dienstverlening voor mensen met een (zeer) ernstige verstandelijke en visuele beperking. Voor mensen met beperkingen is bewegen minder vanzelfsprekend dan voor mensen zonder beperkingen. Dit geldt in nog sterkere mate voor de cliënten van Visio De Brink, die een meervoudige beperking hebben: de combinatie van beperkingen maakt dat compensaties wegvallen en beperkingen elkaar versterken. Door deze combinatie van beperkingen bleken voor deze doelgroep bestaande fittesten niet uitvoerbaar en betrouwbaar tijdens een pilot in 2006.‘Als fit zijn van groot belang is, hoe is het dan gesteld met de fitheid van cliënten van De Brink?’ En: ‘hoe kunnen we dat meten?’ Deze vragen vormden voor Visio De Brink in het jaar 2007 aanleiding om een toegepast onderzoeksproject op te zetten met als doel het verkrijgen van inzicht in de mate van fitheid van haar cliënten. In eerste instantie richtte dit project zich op het aanpassen van bestaande testprocedures en meetmethodes voor mensen met (zeer) ernstige verstandelijke en visuele beperkingen. In de tweede plaats richtte het project zich op de betrouwbaarheid van de testen en de metingen bij deze doelgroep.
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Voor mensen met (zeer) ernstige verstandelijke, visuele en in veel gevallen ook motorische beperkingen, is voldoende beweging en gezondheid niet vanzelfsprekend.Daarom is Koninklijke Visio De Brink al vanaf 2006 actief in het stimuleren van een gezonde leefstijl van haar cliënten, zodat zij optimaal kunnen participeren.
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De Individuele Rehabilitatie Benadering aangepast voor mensen met zeer ernstige verstandelijke en visuele beperkingen die wonen bij Koninklijke Visio, de Brink.
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Demand Driven Care plays a key role in the modernization of the Dutch health care system. This modernization is needed because a) clients needs for care increases quantitatively as well as in diversity, b) the financial means for collective services are inadequate, c) the accessibility of health care will depend on clients own responsibility, and d) shortage of professional care givers is foreseen. In the Netherlands, the need for professional care givers increases with an average of 2% every year. Demand Driven Care is an instrument for liberalization of public activities. The Faculty Chair Demand Driven Care focuses on those activities that will contribute to sufficient care supply. Within the program of the chair, activities are executed under the theme of Integrated Care, Substitution, Patient Centred Care, and Home Care Technology with an emphasis on gerontechnology. The Faculty Chair wants to contribute to a better integration and coherence in care. So that clients live and function independently as long as possible and are able to enhance their self management. In addition, health care professionals should be aware of demand driven processes and should have a demand driven attitude towards clients.
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Background: We investigated the effects of the “Care for Participation+” (CFP+) intervention on direct support professionals’ (DSPs’) attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID).Methods: We implemented a pilot non-randomized controlled trial with two control groups to compare DSPs’ attitudes towards CFP+ using the Attitudes towards Participation Questionnaire (APQ) and DSPs’ written profiles of adults with VSPID.Results: CPP+ and the Participation Mind Map control group showed a positive trend for the “leisure/recreation,” “social relations,” and “ability to act” APQ domains compared to the usual care control group. The CFP+ group described significantly fewer disabilities at 6 months, reflecting a more positive attitude than controls.Conclusion: CFP+ had positive effects on DSPs’ attitudes towards the participation of adults with VSPID. The small sample size, ceiling effects, measurement instruments used, and implementation difficulties may have hampered understanding the full potential of CFP+.
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Voor de ondersteuning van personen met eenvisuele en (zeer) ernstige verstandelijke beperking(VEVB) is specifieke expertise nodig, welkeovergedragen kan worden door cursussen of directesamenwerking in dagelijkse werksituaties.Dit onderzoek heeft in kaart gebracht wat kenmerkenvan expertise zijn in de ondersteuningvan personen met VEVB, gericht op benaderingen inrichting van de fysieke omgeving, en inhoeverre professionals deze expertise explicietkunnen benoemen. 25 Kenmerken van expertisezijn bepaald door cursuscompetenties aan tevullen met bevindingen uit de literatuur en interviewsmet acht begeleiders. Het merendeel vande expertisekenmerken op het gebied van benaderingen fysieke omgeving wordt genoemddoor vijf of minder professionals. Drie van de 25kenmerken worden niet benoemd. Het explicietbenoemen van de specifieke expertise blijkt lastig.Met de bevindingen en aanbevelingen vandit onderzoek kunnen praktijk en onderzoek verbeteringenaanbrengen aan bewustwording enimplementatie van expertise waardoor de kwaliteitvan ondersteuning kan verbeteren.
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Background: The extent of participation of adults with visual and severe or profound intellectual disabilities (VSPID) is unclear.Aims: To explore participation of adults with VSPID and the association between occurrence and importance of aspects of participation.Methods: Individual support plans (ISPs) of 40 adults with VSPID were analyzed: selected text fragments were categorized according to 125 previously operationalized statements that had different levels of importance and were divided into seven participation clusters.Results: The ISPs contained 2791 text fragments that related to a statement. All clusters were covered: the clusters ‘Experience and discover’ (91.7%), ‘Involvement’ (90%), and ‘Social relations’ (87.5%) were well covered. ‘Inclusion’ (53.6%) and ‘Leisure and recreation’ (57.1%) were mentioned less often. Among the 36 high-importance statements, two related to ‘Inclusion’, ‘Involvement’ and ‘Social Relations’ each, three to ‘Communication and being understood’, and five to ‘Self-management and autonomy’ had at least 30 text fragments.Conclusions: The participation domains ‘Experience and discover’, ‘Involvement’, and ‘Social relations’ are well-documented, suggesting that adults with VSPID participate in those areas. However, domains such as ‘inclusion in society’ and ‘leisure in society’ were not documented. This overview of participation offers residential facilities the opportunity to determine in which areas participation can be improved.
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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.
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PurposeThe aims of this study were to adapt the Paediatric Evaluation of Disability Inventory, Dutch version (PEDI-NL) for children with cerebral visual impairment (CVI) and cerebral palsy (CP) and determine test–retest and inter-respondent reliability.MethodThe Delphi method was used to gain consensus among twenty-one health experts familiar with CVI. Test–retest and inter-respondent reliability were assessed for parents and caregivers of 75 children (aged 50–144 months) with CP and CVI. The percentage identical scores of item scores were computed, as well as the interclass coefficients (ICC) and Cronbach's alphas of scale scores over the domains self-care, mobility, and social function.ResultsAll experts agreed on the adaptation of the PEDI-NL for children with CVI. On item score, for the Functional Skills scale, mean percentage identical scores variations for test–retest reliability were 73–79 with Caregiver Assistance scale 73–81, and for inter-respondent reliability 21–76 with Caregiver Assistance scale 40–43. For all scales over all domains ICCs exceeded 0.87. For the domains self-care, mobility, and social function, the Functional Skills scale and the Caregiver Assistance scale have Cronbach's alpha above 0.88.ConclusionThe adapted PEDI-NL for children with CP and CVI is reliable and comparable to the original PEDI-NL.
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