Conference paper
PERCEPTIONS ON SUPPORT, CHALLENGES AND NEEDS AMONG PARENTS OF CHILDREN WITH AUTISM: THE SERBIAN EXPERIENCE
Milica Pejovic-Milovancevic
; Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Institute of Mental Health, Belgrade, Serbia
Miodrag Stankovic
; Faculty of Medicine, University of Nis, Nis, Serbia; Clinic of Mental Health Protection, Clinical Centre Nis, Nis, Serbia
Marija Mitkovic-Voncina
; Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Institute of Mental Health, Belgrade, Serbia
Nenad Rudic
; Institute of Mental Health, Belgrade, Serbia
Roberto Grujicic
; Institute of Mental Health, Belgrade, Serbia
Alexia S. Herrera
; Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Aleksandra Stojanovic
; Faculty of Medicine, University of Nis, Nis, Serbia
Bojan Nedovic
; Faculty of Medicine, University of Nis, Nis, Serbia
Andy Shih
; Autism Speaks, USA
Vanja Mandic-Maravic
; Institute of Mental Health, Belgrade, Serbia
Amy Daniels
; Autism Speaks, USA
Abstract
Background: Autism spectrum disorders (ASD) significantly impact lives of affected individuals and their families. They confront
daunting challenges and multiple demands in their daily life, when compared to parents of children with other disabilities or parents of typically developing children.
Subjects and methods: Participants completed The Caregiver Needs Survey, the survey intended for parents or primary caregivers of children with a diagnosis of ASD. During the study, 231 parents were interviewed; 167 mothers and 64 fathers. Parents were recruited from the patient database comprised of families from the two largest cities in Serbia. All of them were contacted before the study, either via phone or at the child’s regular check-in visit.
Results: Over 90 percent of the parents reported that additional support at schools, home, and improved relationships with
service providers are necessary and important. The most important challenges related to care were child’s communication
difficulties, social interaction difficulties, and problems with daily living skills. The significant predictors of lower overall
satisfaction were parent’s higher education, having a first concern related to problems of the child’s interaction with others or
playing alone, and parent frustration with accessing services in the past 12 months. Greater overall satisfaction, on the other hand, was related to having an in-school tutor training or assistance in managing child’s needs or implementing treatments, and having primary care doctor or pediatrician as a source of information on autism.
Conclusions: Future efforts to develop ASD-related policies and services should also take the following into consideration: the
low level of awareness among caregivers and health care providers about the early signs of autism; disparities in access to services; educational problems and significant levels of dissatisfaction with the overall care and stigma.
Keywords
autism spectrum disorders; parenting; challenges; support; quality of life
Hrčak ID:
262938
URI
Publication date:
21.9.2018.
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