Quality of Life: Research Experiences of Parents of Children with Disabilities

Kvalitetu života moguće je definirati kao nesrazmjer između ostvarenih i neostvarenih čovjekovih potreba. Specifična svakom pojedincu, ali i kulturi i vrijednostima kojima taj pojedinac pripada, postaje važnom pri samom definiranju identiteta. Poseban utjecaj ima na život osoba s invaliditetom i njihove obitelji, koji se još uvijek nalaze između dva različita pristupa: biomedicinskog, koji nastoji ukloniti invaliditet, te socijalnog, koji nastoji naučiti društvo da osobe s invaliditetom prigrli na jednak način kao i sve ostale članove. Istraživanje je provedeno 2017./2018. godine na širem splitskom području, a uzorak se odnosio na roditelje djece s teškoćama u razvoju. Cilj našeg istraživanja bio je dati uvid u kvalitetu života roditelja kroz niz objektivnih i subjektivnih dimenzija, te socijalne podrške, koju smo primjetili kao važnu. Sukladno ciljevima istraživanje je pokazalo kako su naši sudionici u nepovoljnom položaju kada je riječ o povezanosti između njihovih materijalnih prihoda i pokrivanja troškova za iste. Također je moguće utvrditi njihovo nezadovoljstvo vlastitim zdravstvenim stanjem (bilo fizičkim, bilo psihičkim). Generalno je moguće tvrditi kako su roditelji povezani s članovima uže obitelji i šire obitelji (iako u nešto manjoj mjeri), te kako uglavnom nisu bili izloženi različitim stupnjevima stigmatizacije. Generalno nisu bili ni zadovoljni, a ni nezadovoljni pravima koje ostvaruju kao roditelji djece s teškoćama u razvoju, a što se tiče podrške, moguće je konstatirati: obitelj je za roditelje najveći izvor socijalne podrškeQuality of life can be defined as the disparity between realized and unmanaged human needs. Specifically to each individual, but also to the culture and values to which that individual belongs, becomes important when defining identity. There is a particular impact on the lives of people with disabilities and their families, who are still between two different approaches: biomedical, seeking to eliminate disability, and social, trying to teach society to embrace persons with disabilities in the same way as all other members. The research was carried out 2017./2018. year in the wider Split area, and the sample referred to parents of children with developing disabilities. The aim of our research was to give insight into the quality of life of parents through a series of objective and subjective dimensions, as well as social support, which we found to be important. According to our goals, our research has 73 shown that our participants are in a disadvantage when it comes to linking their material revenues and covering their costs. It is also possible to determine their dissatisfaction with their own health condition (either physical, or psychological). It is generally possible to claim that parents are related to close family members and wider families (albeit to a lesser extent) and have not been exposed to different degrees of stigmatization. In general, they were neither satisfied nor dissatisfied with the rights they have as parents of children with developmental difficulties, as far as support is concerned, it is possible to state that: the family is the largest source of social support for parents