{"?xml":{"@version":"1.0"},"edm:RDF":{"@xmlns:dc":"http://purl.org/dc/elements/1.1/","@xmlns:edm":"http://www.europeana.eu/schemas/edm/","@xmlns:wgs84_pos":"http://www.w3.org/2003/01/geo/wgs84_pos","@xmlns:foaf":"http://xmlns.com/foaf/0.1/","@xmlns:rdaGr2":"http://rdvocab.info/ElementsGr2","@xmlns:oai":"http://www.openarchives.org/OAI/2.0/","@xmlns:owl":"http://www.w3.org/2002/07/owl#","@xmlns:rdf":"http://www.w3.org/1999/02/22-rdf-syntax-ns#","@xmlns:ore":"http://www.openarchives.org/ore/terms/","@xmlns:skos":"http://www.w3.org/2004/02/skos/core#","@xmlns:dcterms":"http://purl.org/dc/terms/","edm:WebResource":[{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-D70TXHMA/31eefe5c-d43d-4685-a581-4ea65b202048/HTML","dcterms:extent":"42 KB"},{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-D70TXHMA/9d6519d4-8f36-4124-a76e-dd3816844226/PDF","dcterms:extent":"241 KB"},{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-D70TXHMA/748e3a3e-ab21-4f34-bb31-663deec330ef/TEXT","dcterms:extent":"34 KB"}],"edm:TimeSpan":{"@rdf:about":"2008-2025","edm:begin":{"@xml:lang":"en","#text":"2008"},"edm:end":{"@xml:lang":"en","#text":"2025"}},"edm:ProvidedCHO":{"@rdf:about":"URN:NBN:SI:doc-D70TXHMA","dcterms:isPartOf":[{"@rdf:resource":"https://www.dlib.si/details/URN:NBN:SI:spr-FQ9JBKO1"},{"@xml:lang":"sl","#text":"Rehabilitacija (Ljubljana)"}],"dcterms:issued":"2012","dc:creator":["Damjan, Hermina","Žigon, Suzana Albina"],"dc:format":[{"@xml:lang":"sl","#text":"številka:1"},{"@xml:lang":"sl","#text":"letnik:11"},{"@xml:lang":"sl","#text":"str. 34-41"}],"dc:identifier":["ISSN:1580-9315","COBISSID:1614441","URN:URN:NBN:SI:doc-D70TXHMA"],"dc:language":"sl","dc:publisher":{"@xml:lang":"sl","#text":"Univerzitetni rehabilitacijski inštitut Slovenije - Soča"},"dc:subject":[{"@xml:lang":"en","#text":"Education"},{"@xml:lang":"en","#text":"Gait"},{"@xml:lang":"sl","#text":"hidrocefalus"},{"@xml:lang":"sl","#text":"hoja"},{"@xml:lang":"en","#text":"Hydrocephalus"},{"@xml:lang":"sl","#text":"izobraževanje"},{"@xml:lang":"en","#text":"Meningomyelocele"},{"@xml:lang":"sl","#text":"mielomeningokela"},{"@xml:lang":"sl","#text":"podporna tehnologija"},{"@xml:lang":"sl","#text":"samopomagala"},{"@xml:lang":"sl","#text":"samopripomočki"},{"@xml:lang":"en","#text":"Self-Help Devices"},{"@xml:lang":"sl","#text":"šolanje"}],"dcterms:temporal":{"@rdf:resource":"2008-2025"},"dc:title":{"@xml:lang":"sl","#text":"Uporaba podporne tehnologije pri bolnikih z mielomeningokelo na oddelku za (re)habilitacijo otrok na Univerzitetnem rehabilitacijskem inštitutu Republike Slovenije - Soča| Assistive technology use among patients with myelomeningocela at the department for children (re)habilitation of the University Rehabilitation Institute, Republic of Slovenia|"},"dc:description":[{"@xml:lang":"sl","#text":"Background: Myelomeningocele is the most serious form of spina bifida, the congenital malformation of the neural-tube. The defect occurs when a sac containing part of the spinal cord and its meninges protrude through a gap in the vertebral column; it is frequently accompanied by hydrocephalus. The aim of the study was to analyze assistive technology use among patients with myelomeningocele and their education. We also wanted to find out if there is a difference between patients with myelomeningocele without hydrocephalus and those with hydrocephalus who were operated regarding educational program. Methods: The study was retrospective. We included patients with myelomeningocele with and without hydrocephalus who were treated between 1 January, 2005, and 30 June, 2011, at the Department for Children (Re)Habilitation of the University Rehabilitation Institute in Ljubljana. The analysis addressed age, gender, age at shunt placement, current education program, completed education, use of wheelchair, braces and walking aids, and inclusion in bowel and bladder program. Results: The study included 47 patients between 4 months and 22 years of age. There were 19 patients of male and 28 of female gender. More than half of them have a shunt in place. All the patients were operated before the age of 6 months. Twenty-two percent attended special education programs and 25 % were included in regular education; 12 % attended kindergarten, 12 % were not included in education programs; 44 % of patients completed less then high school, 44 % completed high or vocational school, and 11 % completed facilitated regular education. Sixty-four percent of the patients used orthoses, 27 % used walking aids. All the patients use some kind of assistive technology but there are differences in the type of assistive technology between age groups. In older age groups, there was more use of wheelchair and less use of orthoses. Almost all patients use medical programs for neurogenic bladder and most patients use programs for neurogenic bowel. We could not perform an analysis of differences in current or completed educational program with respect to the age at which the patients with hydrocephalus were operated, because all the patients who needed such operation were operated before the age of 6 months. Conclusions: We believe that good treatment and rehabilitation programs for patients with myelomeningocele are in place in our country. If the patients have hydrocephalus, they have the operation before the age of 6 months. All patients use medical programs for neurogenic bladder and bowel, and participate in educational programs according to their abilities. Further studies should address satisfaction of the patients and their caregivers with the provision of rehabilitation programs and assistive technology"},{"@xml:lang":"sl","#text":"Izhodišča: Mielomeningokela je najtežja oblika spine bifide, prirojene nepravilnosti v razvoju nevralne cevi. Skozi defekt v kostni strukturi zadajšnjih lokov vretenc se lahko izbočijo različne strukture živčevja, zaradi česar pride do okvare. Pogosto se razvije tudi hidrocefalus. Zanimalo nas je, v kolikšni meri bolniki z mielomeningokelo v različnih starostnih obdobjih uporabljajo podporno in medicinsko tehnologijo, ter kakšna je struktura njihove izobrazbe. Ugotoviti smo želeli tudi, ali je kakšna razlika v stopnji dosežene izobrazbe ali aktualnega šolskega programa med bolniki z mielomeningokelo brez hidrocefalusa in tistimi, ki so bili zaradi hidrocefalusa operirani. Metode: Analiza je bila retrospektivna. Vključili smo bolnike z mielomeningokelo (s hidrocefalusom in brez njega), ki so bili obravnavani na oddelku za (re)habilitacijo otrok na Univerzitetnem rehabilitacijskem inštitutu v Ljubljani v obdobju od leta 2005 do junija 2011. Zbrali smo podatke o starosti in spolu bolnikov, o tem, ali so potrebovali operativno zdravljenje zaradi hidrocefalusa in kdaj, v kakšen program izobraževanja so vključeni, kakšno stopnjo izobrazbe so dosegli, ali uporabljajo voziček, ortoze in pripomočke za hojo in ali so bili vključeni v programe medicinske oskrbe za nevrogeno črevo in mehur. Rezultati: V raziskavo smo vključili 47 bolnikov, starih od 4 mesecev do 22 let; 19 jih je bilo moškega in 28 ženskega spola. Dobra polovica bolnikov je imela vstavljeno ventrikuloperitonealno drenažo. Vsi so bili operirani že pred šestim mesecem starosti. Dvaindvajset odstotkov bolnikov je bilo vključenih v prilagojene izobraževalne programe, 25 % v redno izobraževanje; 2 % bolnikov je obiskovalo vrtec, 12 % bolnikov ni bilo vključenih v nobenega od izobraževalnih programov; 44 % bolnikov je zaključilo manj kot srednjo šolo, 44 % srednjo ali poklicno šolo ter 11 % prilagojen izobraževalni program. Različne vrste ortoz je pri hoji uporabljalo 64 % bolnikov, 27 % bolnikov je uporabljalo druge pripomočke za hojo. Vključeni bolniki uporabljajo vsaj eno od vrst podporne tehnologije, ki pa se razlikuje glede na starostno obdobje. Starejši bolniki pogosteje uporabljajo voziček in redkeje ortoze za hojo. Skoraj vsi bolniki so vključeni v programe medicinske oskrbe za nevrogeni mehur, večina tudi v programe oskrbe za nevrogeno črevo. Analize o morebitnem pomenu starosti, ko so bili bolniki zaradi hidrocefalusa operirani, za doseženo stopnjo izobrazbe ali vključenost v eno od oblik izobraževanja nismo mogli opraviti, saj med našimi bolniki ni bilo nikogar, ki bi bil operiran po šestem mesecu starosti. Zaključki: Menimo, da so programi zdravljenja in rehabilitacije za bolnike z mielomeningokelo pri nas dobro zastavljeni. Če pride do hidrocefalusa, jih operirajo zgodaj, pred šestim mesecem starosti. Vsi so vključeni tudi v programe medicinske oskrbe zaradi nevrogenega mehurja in črevesa ter se glede na svoje zmožnosti vključujejo v različne programe izobraževanja. Potrebno bi bilo raziskati, kako so z rehabilitacijskimi programi in z opremljanjem s pripomočki zadovoljni bolniki in njihovi skrbniki"}],"edm:type":"TEXT","dc:type":[{"@xml:lang":"sl","#text":"znanstveno časopisje"},{"@xml:lang":"en","#text":"journals"},{"@rdf:resource":"http://www.wikidata.org/entity/Q361785"}]},"ore:Aggregation":{"@rdf:about":"http://www.dlib.si/?URN=URN:NBN:SI:doc-D70TXHMA","edm:aggregatedCHO":{"@rdf:resource":"URN:NBN:SI:doc-D70TXHMA"},"edm:isShownBy":{"@rdf:resource":"http://www.dlib.si/stream/URN:NBN:SI:doc-D70TXHMA/9d6519d4-8f36-4124-a76e-dd3816844226/PDF"},"edm:rights":{"@rdf:resource":"http://rightsstatements.org/vocab/InC/1.0/"},"edm:provider":"Slovenian National E-content Aggregator","edm:intermediateProvider":{"@xml:lang":"en","#text":"National and University Library of Slovenia"},"edm:dataProvider":{"@xml:lang":"sl","#text":"Univerzitetni rehabilitacijski inštitut RS – Soča"},"edm:object":{"@rdf:resource":"http://www.dlib.si/streamdb/URN:NBN:SI:doc-D70TXHMA/maxi/edm"},"edm:isShownAt":{"@rdf:resource":"http://www.dlib.si/details/URN:NBN:SI:doc-D70TXHMA"}}}}