AIM: The objectives of this study were (i) to develop two cerebral visual impairment motor questionnaires (CVI-MQ's) for children with cerebral palsy (CP): one for children with Gross Motor Function Classification System (GMFCS) levels I, II and III and one for children with GMFCS levels IV and V; (ii) to describe their face validity and usability; and (iii) to determine their sensitivity and specificity.BACKGROUNDS: The initial versions of the two CVI-MQ's were developed based on literature. Subsequently, the Delphi method was used in two groups of experts, one familiar with CVI and one not familiar with CVI, in order to gain consensus about face validity and usability. The sensitivity and specificity of the CVI-MQ's were subsequently assessed in 82 children with CP with (n = 39) and without CVI (n = 43). With the receiver operating curve the cut-off scores were determined to detect possible presence or absence of CVI in children with CP.RESULTS: Both questionnaires showed very good face validity (percentage agreement above 96%) and good usability (percentage agreement 95%) for practical use. The CVI-MQ version for GMFCS levels I, II and III had a sensitivity of 1.00 and specificity of 0.96, with a cut-off score of 12 points or higher, and the version for GMFCS levels IV and V had a sensitivity of 0.97 and a specificity of 0.98, with a cut-off score of eight points or higher.CONCLUSION: The CVI-MQ is able to identify at-risk children with CP for the probability of having CVI.
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Background: To date, there is no evidence-based functional therapy programme available for children with both cerebral palsy (CP) and cerebral visual impairment (CVI). This study evaluates an individually targeted functional therapy programme adapted for these children experiencing difficulties with gross motor functioning and functional skills. Methods: Participants: Five children with CP and CVI, mean (SD) age 114 (52) months, participated in this study. Intervention: Participants were assigned to an 18-week functional therapy programme including nine weeks of individual functional therapy aimed at improving gross motor function followed by nine weeks of daily training of functional skills from the parents/caregivers. Analyses: The Related Samples Wilcoxon Signed Rank Test with a significance level of p<.05 was utilised to detect possible significant differences between the pre- and post-test. Results: According to the Goal Attainment Scaling (GAS), each child improved gross motor functioning. All the children also scored significantly higher in the section Functional Skills in the domains self-care and mobility as well as in the section Caregiver Assistance in the domain of self-care. Conclusion: This adapted individually functional therapy programme suggests improved gross motor functioning and functional skills in children with CP and CVI.
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Signalen uit het veld van de (jeugd)reclassering wijzen er op dat bij jongeren met een licht verstandelijke beperking (LVB) en reclasseringscontact huisvesting één van de leefgebieden is waarop zich problemen voordoen. (Jeugd)reclasseringswerkers geven daarbij aan dat het ontbreken van een eigen woonplek jongeren met een LVB extra kwetsbaar en beinvloedbaar maakt, wat leidt tot een verhoogde kans op recidive. Ook geven werkers aan dat veel hulpverleningsinstanties niet goed in staat zijn om voor deze specifieke doelgroep een hulpverleningstraject gericht op passende huisvesting in te zetten. Deze signalen uit het werkveld hebben er toe geleid dat de William Schrikker Groep Jeugdreclassering (WSG-JR) en het Leger des Heils Jeugdzorg & Reclassering (LJ&R) de Hogeschool Leiden en de Hogeschool Utrecht hebben gevraagd om een probleemverkenning uit te voeren naar huisvestingsproblematiek bij jongeren met een LVB en reclasseringscontact
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PURPOSE: To investigate whether the adapted version of the Gross Motor Function Measure-88 (GMFM-88) for children with Cerebral Palsy (CP) and Cerebral Visual Impairment (CVI) results in higher scores. This is most likely to be a reflection of their gross motor function, however it may be the result of a better comprehension of the instruction of the adapted version.METHOD: The scores of the original and adapted GMFM-88 were compared in the same group of children (n=21 boys and n=16 girls), mean (SD) age 113 (30) months with CP and CVI, within a time span of two weeks. A paediatric physical therapist familiar with the child assessed both tests in random order. The GMFCS level, mental development and age at testing were also collected. The Wilcoxon signed-rank test was used to compare two different measurements (the original and adapted GMFM-88) on a single sample, (the same child with CP and CVI; p<0.05).RESULTS: The comparison between scores on the original and adapted GMFM-88 in all children with CP and CVI showed a positive difference in percentage score on at least one of the five dimensions and positive percentage scores for the two versions differed on all five dimensions for fourteen children. For six children a difference was seen in four dimensions and in 10 children difference was present in three dimensions (GMFM dimension A, B& C or C, D & E) (p<0.001).CONCLUSION: The adapted GMFM-88 provides a better estimate of gross motor function per se in children with CP and CVI that is not adversely impacted bytheir visual problems. On the basis of these findings, we recommend using the adapted GMFM-88 to measure gross motor functioning in children with CP and CVI.
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Binnen het Raak Pro project ‘Praten kan ik niet …, maar communiceren wil ik wel’ hebben we onderzoek gedaan naar het gebruik van Communicatie Ondersteunende Hulpmiddelen (COH) bij kinderen/jongeren met ernstige communicatieve en meervoudige beperkingen. Het ging om kinderen/jongeren die niet, nauwelijks of zeer slecht verstaanbaar spreken vanwege hun meervoudige beperkingen. We onderzochten hoe zij en mensen in hun omgeving, bijvoorbeeld ouders, leraren en/of behandelaars geholpen konden worden bij het zoeken, selecteren en inzetten van de best passende en meest adequate hulpmiddelen om de communicatie van het kind/de jongere te ondersteunen en verder te ontwikkelen. Goede, optimaal aangepaste hulmiddelen, methoden en technieken voor communicatieondersteuning vergroten de mogelijkheden en kansen van deze kinderen en jongeren om meer (zelf)redzaam te worden, meer regie te hebben over eigen kwaliteit van leven en meer succesvol deel te nemen aan verschillende activiteiten in allerlei sociale en maatschappelijke contexten: thuis, op school, in dagbesteding of werk en in de vrije tijd. Hiervoor is een Routekaart ontwikkeld. Onderdeel van de Routekaart is het proces van assessment waarin onderzocht wordt welke barrières/functioneringsproblemen het kind/de jongere ervaart bij het communiceren met anderen; wat zijn/haar behoeften en wensen zijn wat betreft het communiceren en welke mogelijkheden de persoon heeft om, eventueel met behulp van een COH, te kunnen communiceren in alledaagse levenssituaties.
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The aim of this study was to gain insight into the visual functioning of children with profound intellectuual and multiple disabilities (PIMD). A mixed methods study was performed, determining cross-sectional quantitative ophthalmological/orthoptic data, and qualitative observational data with a standardized research protocol (SRP) of 73 children with PIMD. Descriptive statistics and correlations were used for analyses of the data. Using ophthalmological data, 90.4% of the participants were found visually impaired. Based on the visual acuity (VA) testing, 49.6% of the participants had an impaired VA (
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