Kvalitet života porodica sa detetom sa ometenošću

Abstract

U radu je analizirana savremena literatura koja se bavi proučavanjem kvaliteta života porodica sa detetom sa ometenošću. Osnovna istraživačka pitanja bila su: koji teorijski modeli porodičnog kvaliteta života su predstavljeni u literaturi, koji su ključni faktori i dominantni prediktori kvaliteta života porodica sa detetom sa ometenošću i koje su mogućnosti pospešivanja, odnosno poboljšanja kvaliteta života ovih porodica. Revijalnim pregledom dostupne literature i analizom rezultata prikazanih u izdvojenim studijama, sistematizovana su saznanja iz ove oblasti. Kao rezultat sveobuhvatne pretrage, prikazano je ukupno dvanaest istraživanja koja su objavljena u tekućoj i prethodnoj deceniji, a koja su svojim rezultatima pružala odgovore na postavljena istraživačka pitanja. Kao osnovni faktori kvaliteta života porodica sa detetom sa ometenošću izdvajaju se: stepen ometenosti deteta i intenzitet ispoljavanja problema u ponašanju, finansijsko stanje porodice, porodični odnosi, zdravstveno stanje svih članova, praktična pomoć od članova šire porodice i od prijatelja, zatim adekvatnost servisnih usluga i parterstvo sa porodicom. Kvalitet porodičnog života prevazilazi potrebe člana sa ometenošću, a sažima u sebi potrebe svih članova porodice, kao i jake strane funkcionisanja porodične zajednice, ali i zahteva partnerski odnos između porodice i stručnjaka u postavljanju prioriteta i ostvarivanju zajedničkih ciljeva. U odabiru i planiranju usluga usmerenih na porodicu neophodno je promovisati okruženje koje pruža podršku i poboljšava kvalitet života cele porodice.

In this paper, the contemporary literature focused on quality of life of families with a child with disability was analyzed. The main research questions were: what theoretical models of family quality of life are represented in the literature, which are the key factors and dominant predictors of quality of life of families with a child with disabilities and which possibilities for enhancing and improving of the quality of life of these families are presented. Systematization of the knowledge in this field was carried by the available literature review and the analysis of results presented in allocated studies. As a result of comprehensive search, a total of twelve studies published in the current and previous decade was presented. These studies provided answers to the research questions with their results. As the basic factors of quality of life of families with a child with disability were allocated: level of disability of child and intensity of behavioral problems manifestations, financial situation of the family, family relations, health status of all members, practical help from extended family members and friends, followed by the adequacy of services and their partnerships with family. The quality of family life exceeds the needs of a member with disabilities, and sums up the needs of all family members, as well as the strengths of the family functioning. In addition, family quality of life requires a partnership between families and professionals in setting of priorities and achieving their common goals. It is necessary to promote an environment that supports and enhances the quality of life of the whole family when selecting and planning familycentered professional support.