The Family Quality of Life for Families of Children with Intellectual and Developmental Disabilities

Magistrska naloga obravnava kvaliteto življenja družin, ki imajo otroke z motnjami v duševnem razvoju v Sloveniji. Zajema 44 družin iz slovenskih pokrajin Koroška, Štajerska in Pomurje. Pojem družina, njene značilnosti in njen položaj v družbi se skozi čas spreminjajo. V teoretičnem delu magistrske naloge je zato najprej zajeta opredelitev družine in njene značilnosti v sodobnem času. Rojstvo otroka z motnjami v duševnem razvoju močno vpliva na člane ožje in širše družine in lahko vpliva na vse vidike družinskega funkcioniranja. V nalogi so prav zaradi tega natančneje opredeljene in klasificirane motnje v duševnem razvoju in vzroki za nastanek le-teh, ter tudi druge oziroma spremljevalne motnje, ki se izražajo na različnih področjih življenja: odnosi v družini z otrokom z motnjo v duševnem razvoju, partnerstvo staršev, vloge in položaj posameznih družinskih članov itd. Osrednji poudarek magistrske naloge je na kvaliteti življenja družin, ki imajo otroke z motnjami v duševnem razvoju. Pojem kvalitete življenja se ukvarja z dobrobitnostjo in z zadovoljstvom v življenju in ker si ljudje ta pojem zelo različno razlagamo, je v nalogi opredeljen sam pojem kvalitete življenja ter koncept kvalitete življenja. Ker je kvaliteta življenja družin dokaj novo področje raziskovanja in ker naj bi odražala dojemanje kvalitete življenja, tako njenih posameznih članov kakor družine kot celote, je za strokovnjake še zmeraj izziv, kako zajeti vse različne vidike življenja. Velik del teoretičnega dela magistrske naloge je tako namenjen različnim področjem življenja, ki naj bi pomembno vplivala na dojemanje kvalitete življenja, tako posameznika kakor cele družine. Ta področja so zajeta tudi v anketnem vprašalniku, ki smo ga uporabili v empiričnem delu in katerega avtorji so Ivan Brown, Roy I. Brown, Nehama T. Baum idr., v slovenščino pa ga je prevedla dr. Majda Schmidt. Z njim smo zbrali tako kvalitativne kot kvantitativne podatke, ki jih je bilo mogoče pridobiti le v sodelovanju z družinami, ki imajo otroke z motnjami v duševnem razvoju in prišli do nekaterih zelo zanimivih ugotovitev.This master\u27s thesis studies the quality of life in families of children with intellectual disabilities in Slovenia, with the sample of 44 families from three Slovenian regions, namely Koroška, Štajerska, and Pomurje. The concept of family, its characteristics and its position in society have changed over time and for that reason the definition of the family and its characteristics in modern times is dealt with in the theoretical part of the thesis. When a child with intellectual disabilities is born, this has a strong impact on the members of the immediate and extended family, and it can also affect all aspects of the family functioning. For this reason intellectual disabilities and their causes are defined and classified in the thesis, together with other accompanying disorders that appear in other different areas of life, namely in relationships within the family of a child with an intellectual disability, in the partnership of her parents, in the role and position of individual family members, etc. The main focus of this thesis is the quality of life of families of children with intellectual disabilities. The concept of quality of life implies well-being and satisfaction in life, and since this term has different interpretations, this paper defines the notion of the quality of life as it is, and the concept of quality of life. As the quality of family life is a relatively new field of research, and since it reflects the quality of life as perceived by both its individual members and the family as a whole, it is still a challenge for the experts in their attempts to cover all the different aspects of family life. A great part of the theoretical thesis is therefore dedicated to exploring different areas of life, which are supposed to have a significant impact on the perceived quality of life of the individual and of the family as a whole. These areas are also covered by the survey questionnaire, which was used in the empirical part, and whose authors are John Brown, Roy I. Brown, T. Quit Baum et al. It was translated to Slovene by dr. Majda Schmidt. Both the qualitative and quantitative data that was possible to be obtained only from the families who have children with intellectual disabilities was gathered, and has led to some very interesting findings