First symptoms and support / aid to families children with disoerders of Autism spectrum

Abstract

Podizanje deteta sa poremećajem iz spektra autizma (PSA) predstavlja izazov koji zahteva značajnu uključenost svih članova porodice, informisanost porodice o karakteristikama poremećaja kao i o dostupnim vidovima zdravstvene zaštite i podrške roditeljima i deci. Cilj: Utvrđivanje koji su prvi simptomi, uzrast deteta kada je postavljena dijagnoza, utrvrđivanje dostupnosti dodatne pomoći iz domena obrazovanja i socijalne zaštite, kao i dodatne pomoći za roditelje dece sa PSA. Materijal i metode: Korišćen je metod prikupljanja kvantitativnih podataka u vidu ankete, a ispitanici su iz registra pacijenata s dijagnozom poremećaja iz spektra autizma. Uzorak se sastojao od 223 dece muškog pola i 58 ženskog pola (ukupo 281). U istraživanju smo koristili upitnik koji je razvijen od strane Ejmi Deniels (Amy Daniels) i nacionalnih koordinatora Mreže jugoistočne Evrope za autizam (Southeast European Autism Network-SEAN). Rezultati: Ukupno je intervjuisan 281 roditelj. Prosečni uzrast kada je postavljena dijagnoza PSA bio je 45.8 meseci (SD 22.4). Najčešći prvi simptomi kod dece bili su: 1) problem uspostavljanja kontakta očima tokom razgovora ili igre; 2) dete nije razumelo šta mu roditelji ili drugi odrasli govore; 3) teškoće u socijalnim interakcijama; i 4) neuobičajeni pokreti (hodanje na prstima, lepršanje rukama, okretanje oko sebe). Tri najčešća vida terapije koji su korišćeni bili su: tretman govora ili jezika 150 ispitanika (53,3%), farmakoterapijа 83 ispitanika (29.5%) i senzorna integrativna terapija 80 ispitanika (28,5 %). Zaključak: Život dece u poremaćajima iz spektra autizma ne bi trebalo da predstavlja problem samo pojedinca i njegove porodice, već i celog društva. Podrška pоdrazumeva razvoj svih službi koje imaju mogućnost da olakšaju život deci i njihovim roditeljima.

Formal and informal support for Croatian and Serbian people with disabilities and their families: A scoping review

“…The majority of the studies did not report specific types of disabilities, or their sample consisted of people with multiple disabilities or caregivers of individuals with multiple disabilities. Three studies focused on intellectual disabilities (Buljevac & Leutar, 2017;McConkey et al, 2013;Petrović et al, 2016), one included mothers of children with Prader-Willi syndrome (PWS) (Čagalj et al, 2018), one mothers of children with Williams syndrome (Milić Babić et al, 2017), three focused on autism spectrum disorder (ASD) (Daniels et al, 2017;Krsmanović et al, 2017;Pejovic Milovancevic et al, 2018), one included persons with visual impairments (Stanimirović et al, 2012), and two studies focused on physical disabilities (Karačić, 2012;Levačić & Leutar, 2011).…”

“…Our review showed that Croatian and Serbian caregivers of PWD received informational, emotional, practical, and financial support at different degrees. Informational support was depicted through information about rights, characteristics of disability, children's health needs, and available formal support (Čagalj et al, 2018;Daniels et al, 2017;Golubović et al, 2015;Krsmanović et al, 2017;Milić Babić et al, 2017;Stanimirović et al, 2012). The main sources of information were other caregivers of PWD, internet, and NGOs, followed by psychologists and teachers, while primary care physicians and social workers were mentioned less (Čagalj et al, 2018;Daniels et al, 2017;Golubović et al, 2015;Krsmanović et al, 2017;Lisak et al, 2017;Milić Babić et al, 2017;Pejovic Milovancevic et al, 2018).…”

“…They did not obtain services for their child because services were not available in their area, they were on a waiting list, or costs were high (Daniels et al, 2017;Pejovic Milovancevic et al, 2018). Obtaining a diagnosis was a common challenge for families as there were not enough qualified physicians in their hometowns, so they had to travel to larger cities or even abroad (Čagalj et al, 2018;Daniels et al, 2017;Krsmanović et al, 2017;Lisak et al, 2017;Pejovic Milovancevic et al, 2018). The majority of the families reported various challenges with the school system as well (Čagalj et al, 2018;Daniels et al, 2017;Lisak et al, 2017;Pejovic Milovancevic et al, 2018).…”

“…Service providers provided practical support during therapies (Daniels et al, 2017;Krsmanović et al, 2017;Pejovic Milovancevic et al, 2018), education (Lisak et al, 2017;Pejovic Milovancevic et al, 2018;Stančić et al, 2015), and different social services (Avramović & Žegarac, 2016;Jelić & Mihajlović-Babić, 2018;Karačić, 2012;Leutar & Marković, 2011;Milic Babic & Dowling, 2015;Žganec et al, 2012). The most common therapies provided to children with ASD were standard developmental non-pharmacological treatments (Daniels et al, 2017;Krsmanović et al, 2017;Pejovic Milovancevic et al, 2018). Children with DD attended special schools most frequently, followed by inclusive classrooms and special classrooms in mainstream schools (Krsmanović et al, 2017;Pejovic Milovancevic et al, 2018).…”

Untitled

“…and this is a support measure that is applicable in the Republic of Serbia since 2012(Damjanović & ĐorĎić, 2014). Even though every child with diagnosis qualifies for shadow teachers services, according to Social services law of Republic of Serbia (2011), a previous research conducted in this country shows that only 12% of children with special educational needs have this type of service(Krsmanović et al, 2017), which is unfortunately not enough and there should be more services and organizations that can allow the children and their families to obtain the support they need (Vlaović-Vasiljević et al, 2016).…”