Kvalitet života braće i sestara uporodicama sa decom sa teškoćama u razvoju

Abstract

Promenom sa medicinskog na socijalni model poimanja invaliditeta, menja se gledište i shvatanje invalidteta i teškoća jer se invaliditet više ne posmatra kao problem sam po sebi, već se razmatra kako se društvo i okolina mogu menjati da bi pojedinac mogao optimalno da funkcioniše. Stoga se više ne posmatra samo teškoća deteta, već je u fokusu celokupno funkcionisanje deteta i kvalitet života porodice. Kako bi kvalitet života porodice bio zadovoljavajući, važno je da se unapređuje kvalitet života svih njenih članova. S tim u vezi, u ovom radu će se razmatrati kvalitet života braće i sestara dece sa teškoćama u razvoju. Istraživanja upućuju na to da odnos braće i sestara tipičnog razvoja sa braćom i sestrama sa teškoćama u razvoju može imati niz povoljnih i nepovoljnih karakteristika. Kako bi se smanjile nepovoljne karakteristike takvog odnosa i unapredio kvalitet života braće i sestara dece sa teškoćama u razvoju, kao i da bi im se pružila podrška, u Udruženju za ranu intervenciju Varaždinske županije, organizovane su radionice za braću i sestre. Tokom radionica se kroz vođene aktivnosti razvijala pozitivna slika o sebi, podsticalo se prihvatanje različitosti, kao i deljenje iskustva. U radu radionica učestvovalo je sedmoro korisnika, a nakon šestomesečnog rada sprovedeno je istraživanje. Cilj istraživanja bio je da se dobije uvid u promišljanja roditelja dece sa teškoćama u razvoju o tome da li pohađanje radionica za braću i sestre (dece bez teškoća) utiče na kvalitet života braće i sestara dece sa teškoćama. U istraživanju je učestvovalo sedam majki čija su deca polaznici Udruženja. Istraživanje se sprovedeno putem intervjua. Intervju je sniman audio-zapisom i kasnije su napravljeni transkripti. Korišćen je polustrukturirani intervju. Rezultati ispitivanja ukazuju na to da braća i sestre dece sa teškoćama u razvoju imaju niži kvalitet življenja nego njihovi vršnjaci tipičnog razvoja. Takođe, kod njih se često javljaju negativna osećanja poput manje vrednosti, krivice, ljubomore i srama jer je izražen nedostatak psihosocijalne podrške celoj porodici. Pored toga, u istraživanju je potvrđen pozitivan uticaj organizovanih radionica na braću i sestre dece sa teškoćama u razvoju i to najviše na razvoj samopouzdanja, veštine komunikacije i pozitivne slike o sebi, ali i na razumevanje i prihvatanje teškoća brata ili sestre.

Switching from medical to social model in understanding disability altered the standpoint and perception of disability and difficulties. The disability is no longer observed as a problem per se: it is now being considered how society and environment can change for an individual to function optimally. Therefore, the focus is not only on the child’s difficulties but on the overall functioning of the child and the quality of life of a family. For a satisfying quality of life of a family, it is important to improve the quality of life of all its members. In this regard, this paper deliberates the quality of life of the siblings of children with developmental difficulties. According to the available researches, the relationship between typical siblings with a sibling with developmental difficulties has both positive and adverse traits. In order to reduce the adverse qualities of such a relationship and improve the quality of life of siblings of children with developmental difficulties, as well as to offer the support, the workshops for siblings have been organized in the Early Intervention Association of Varaždin County. During the workshops, the guided activities helped in developing a positive self-image and encouraged accepting diversity and sharing experiences. There were seven users involved in the workshops, and after a six-month period the research was conducted. The aim of the research was to gain an insight into the parents’ view whether the typical siblings’ participation in the workshops affected the quality of life of siblings with disabilities. The research included 7 mothers whose children participated in the Association. The research was conducted through interviews which were audio recorded and afterwards transcribed. A semi-structured interview was used as a framework analysis method. The research results suggested that siblings of the children with developing disabilities had a lower quality of life than their typical peers. They also often had heavy emotions such as inferiority, guilt, jealousy and shame because there was a lack of psychosocial support for the entire family. The study also confirmed the positive effect of the organized workshops on the siblings of children with disabilities, primarily in developing self-confidence, communication skills and positive self-image, but also in understanding and accepting the difficulties of a sibling.