Intersectoral care for children with autism spectrum disorder in Kazakhstan: Parents perspective

Abstract

Abstract Background The prevalence of autism spectrum disorder (ASD) is steadily increasing worldwide, including in Kazakhstan. Recognizing the significance of early detection and providing intersectoral assistance encompassing social, medical, and educational support, it is essential for promoting children's socialization in their daily lives. The purpose was to analyze the provision of comprehensive assistance to parents of ASD children. We conducted a descriptive qualitative study that involved semi-structured face-to-face interviews with parents of ASD children. 60 respondents (51,7% under 34 years old, 45,0% - 35-44 years and 3,3% up to 45 years) participated in our study. Framework Analysis used to interpret results. Results The average age of ASD children was 6.3. 26.0% of families were single-parent households, 30.0% residents in rural areas, 66.6% had one working parent, and 58.3% had obtained higher education. 52 parents note partial support from the government, mainly the expenses of parents are associated with the purchase of books, receiving other supporting services as sports activities. Due to long waiting list from the government parents noted the other services related to out-of-pocket payments as ABA therapy, a visit to a neurologist, correctional trainings. All parents noted that they want to receive information through organizing seminars, including psychological support. Conclusions Intersectoral collaboration plays a crucial role in facilitating comprehensive assistance for ASD children and meeting their needs through government support. Improving access to transportation, resource books, organizing seminars, and implementing programs to reduce waiting lists for medical and pedagogical specialists are necessary steps. Funding The Ministry of Science and Higher education of Kazakhstan (BR18574199 «Integrating children with autism spectrum disorder into the social and educational environment based on comprehensive support: challenges and benefits). Key messages • To achieve the SDG the decision makers of all three sectors in Kazakhstan need to improve care program for ASD children. • It is necessary to expand and revise the provision of services to ensure access to educational, medical services.