Author/Editor		Brezovar, Darinka; Groleger Sršen, Katja
Title		Zadovoljstvo staršev otrok z živčno-mišičnimi boleznimi s postopki pridobitve vozička
Translated title		Parental satisfaction with prescribed wheelchairs for children with neuromuscular diseases
Type		članek
Vol. and No.		Letnik 19, št. 1
Publication year		2020
Volume		str. 51-58
ISSN		1580-9315 - Rehabilitacija
Language		slv
Abstract		Izhodišče: Pri testiranju ustreznega invalidskega vozička sodeluje tim strokovnih delavcev. Z raziskavo smo želeli ugotoviti, kako so starši otrok z Duchennovo mišično distrofijo (DMD) in s spinalno mišično atrofijo (SMA) zadovoljni s tehničnimi lastnostmi vozičkov in strokovnimi storitvami. Zanimalo nas je tudi, pri kateri starosti v redni klinični praksi otroku s temi težavami prvič predpišemo voziček na elektromotorni pogon. Metode: Starši, ki so z otrokom prišli na testiranje novega invalidskega vozička v obdobju od novembra 2013 do novembra 2019, so ocenili zadovoljstvo z uporabo obstoječega vozička z vprašalnikom QUEST 2.0 (Quebec User Evaluation of Satisfaction with assistive Technology, version 2.0). Iz dokumentacije smo retrogradno poiskali podatke o zadovoljstvu staršev otrok z DMD in s SMA in splošne podatke otrok. Rezultati: Analizirali smo 16 vprašalnikov 13 staršev (trije so v tem obdobju ocenili zadovoljstvo z dvema vozičkoma). Večina otrok je uporabljala voziček na elektromotorni pogon. Starši so bili najbolj zadovoljni z dimenzijami vozička, enostavnostjo uporabe in prilagoditvami, najmanj pa s težo in trajnostjo vozička. Zadovoljni so bili tudi s postopki oskrbe, vendar je analiza glede na dobavitelja vozičkov pokazala, da so bili starši z enim od štirih dobaviteljev zadovoljni precej manj. Analiza podatkov je še pokazala, da smo otrokom s SMA elektromotorni voziček predpisali povprečno pri 5,3 leta, otrokom z DMD pa pri 8,2 leta. Razprava: Analiza ocen staršev o zadovoljstvu s tehničnimi lastnostmi vozičkov in postopki oskrbe pri otrocih z DMD in s SMA tip 2 je pokazala, da so starši zadovoljni. Glede na ocene ustreznosti vozička lahko sklepamo, da je delo v okviru tima strokovnjakov za testiranje vozičkov strokovno zelo dobro opravljeno. Možnosti izboljšav zaradi nižjih ocen teže vozička in njegove vzdržljivosti so omejene zaradi omejenega cenovnega standarda, ki ga določa Zavod za zavarovanje Slovenije. V prihodnosti bi v redni klinični praksi pri otrocih s SMA tip 2 o opremi z vozičkom na elektromotorni pogon lahko razmišljali prej in ne šele tik pred vstopom v šolo.Background: A team of professionals participates in the testing of a suitable wheelchair. The aim of our research was to find out how parents of children with Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA) are satisfied with the technical characteristics of wheelchairs and associated professional services. We were also interested in the age at which a child with these problems is first prescribed a powered wheelchair. Methods: Parents who came with their child to test a new wheelchair between November 2013 and November 2019 were asked to fill in the QUEST 2.0 questionnaire (Quebec User Evaluation of Satisfaction with assistive Technology, version 2.0). We retrospectively searched for specific data on the satisfaction of parents of children with DMD and SMA and general data of the children. Results: We analysed 16 questionnaires from 13 parents (three rated their satisfaction with two wheelchairs during this period). Most of the children used a powered wheelchair. Parents were most satisfied with the dimensions of the wheelchair, ease of use and adjustments, and least with its weight and durability. They were also satisfied with the care provision. Further analysis showed that parents were much less satisfied with one of the four suppliers. We also observed that the children with SMA were prescribed an electric wheelchair at the average age of 5.3 years, whereas the children with DMD at the average age of 8.2 years. Discussion: An analysis of parents% assessments of satisfaction with the technical characteristics of powered wheelchairs and care procedures in children with DMD and SMA type 2 showed that parents are satisfied. Based on the assessments of the suitability of the wheelchair, we can conclude that the work within the team of experts for testing wheelchairs is done very professionally. The possibilities for improvement due to lower scores of the weight of the wheelchairs and their durability are limited because of the limited price-standard set by the national health insurance company. In the future clinical practice in children with SMA type 2, electric-powered wheelchair equipment could be considered sooner rather than just before entering school.
Descriptors		Wheelchairs Child Neuromuscular Diseases rehabilitation
Keywords		minimal clinically important difference child wheelchair testing satisfaction Quebec User Evaluation of Satisfaction with assistive Technology QUEST otrok invalidski voziček testiranje zadovoljstvo