POTREBE GIBALNO OVIRANIH OTROK IN MLADOSTNIKOV TER NJIHOVIH STARŠEV ZA KAKOVOSTNO ŽIVLJENJE

• Main Author: Božnar, Kristina
• Other Authors: Klemenc Ketiš, Zalika
• Format: Master Thesis
• Language: Slovenian
• Published: 2016
• Subjects: gibalno ovirani otroci; potrebe otrok; potrebe staršev; physically handicapped children; the needs of children; the needs of parents; sami
• Online Access: https://dk.um.si/IzpisGradiva.php?id=63725; https://dk.um.si/Dokument.php?id=106009&dn=; http://www.cobiss.si/scripts/cobiss?command=DISPLAY&base=cobib&rid=7820307&fmt=11

Gibalna oviranost v družino prinese nepričakovane skrbi in težave. Življenje se kar naenkrat spremeni in dobi nov smisel. Starši želijo vsem svojim otrokom omogočiti čim bolj kakovostno, samostojno in zdravo življenje nekako vedo, kako to omogočiti. Če pa gre za zagotovitev čim kakovostnejšega življenja gibalno oviranemu otroku, pa je situacija drugačna. Pogosto se zgodi, da starši sploh ne vedo, kakšno prognozo ima otrok. Najpogosteje se z boleznijo in težavami, ki se ob tem pojavljajo, srečujejo starši in drugi družinski člani sami. Situacijo skušajo kar se le da dobro sprejeti, težave, ki se pojavljajo, sproti reševati ali prikriti, čeprav na njihovo reševanje velikokrat nimajo niti vpliva niti nimajo možnosti izraziti svojega mnenja. Že majhne spremembe, prilagoditve ter možnosti, ki bi jim bile omogočene, bi pomenile napredek, s katerim bi bilo življenje otrok, njihovih staršev in ne nazadnje celotne družine bolj kakovostno. Prvi del magistrske naloge temelji na teoriji. Predstavili smo klasifikacijo in različne oblike gibalne oviranosti, ki jih poznamo pri otrocih in mladostnikih v nadaljevanju pa smo opisali različna področja potreb gibalno oviranih otrok in njihovih staršev za kakovostnejše življenje. V drugem delu naloge smo, s pomočjo staršev, predstavili področje potreb, ki jih imajo pri zagotavljanju kakovostnejšega življenja. Raziskava je potekala z anonimnim vprašalnikom, ki smo ga članom društev in staršem otrok v šolah, ki izobražujejo tudi gibalno ovirane, razdelili preko odgovornih oseb. Anketa je zaradi boljšega, lažjega in obsežnejšega odziva staršev potekala v papirni in elektronski izvedbi, preko 1ka ankete. Raziskava je pokazala, da, po mnenju staršev, njihovi gibalno ovirani otroci za kakovostnejše življenje potrebujejo še več prilagoditev in pomoči, kot smo pričakovali. Pomoč potrebujejo na različnih področjih, pogosto pa si sami ne morejo ali ne znajo pomagati. Physical disability brings unexpected worries and problems into the family. Life suddenly changes and takes on a new meaning. Parents want a quality, independent, and healthy life for all of their children and somehow they know how to make that possible. However, when it comes to ensuring that same quality of life for a physically handicapped child, the situation is quite different. It is often the case that parents do not know what prognosis the child actually has. Parents and other family members are often alone in their attempt to deal with the diseases and problems. They try to accept the situation as best as possible and solve problems as they arise or attempt to cover them up. In many cases, they have no direct influence on problem solving or the opportunity to express their own opinion. Even small changes, adjustments, and additional options could provide progress which would lead to a better quality of life for the children, their parents, and finally, for the whole family. The first part of the master's thesis is based on theory. We presented the classification and different forms of physical disabilities that are known in children and young adults. Next, we described the different areas of need that physically handicapped children have along with their parents toward a better quality of life. In part two, with the help of parents, we presented areas of need that children have for providing a better quality of life. The survey was conducted by anonymous questionnaires, which were distributed to members of societies and parents of children in schools that educate the physically handicapped. The survey was conducted using paper and electronic modes resulting in a better, easier, and more comprehensive response from the parents. The survey demonstrated, according to the parents, that physically disabled children need more customization and support for a better quality of life than we expected. They need help in various areas, knowing they cannot help themselves and often do not know how to help.