Imamatdinova Aziza, Samambayeva Aizhan, Akhtaeva Nazgul, Kozhageldiyeva Laura, Sabyrdilda Zhanara, Kapanova Gulnara, Kosherbayeva Lyazzat
Asfendiyarov Kazakh National Medical University, Almaty, Kazakhstan.
SDU University, Almaty oblast, Kazakhstan.
BMC Public Health. 2025 Aug 6;25(1):2676. doi: 10.1186/s12889-025-23764-3.
Autism spectrum disorders (ASD) is a neurodevelopmental disorder manifested by a violation of the lack or deficiency of communication, socialization and repetitive behavior. The prevalence of ASD is rising globally. Early identification of children and comprehensive assistance are critical to reduce the burden. The purpose of our work is to study the current practice and experience of parents of children with ASD in obtaining care for their children and identify future directions for improving systemic care in Kazakhstan.
The multidisciplinary team of specialists, including parents of children with ASD were involved in developing the questionnaire that aimed to identify the gaps in complex care for children with ASD. A cross-sectional study was conducted for 390 parents of children with ASD from all regions, including urban and rural areas of Kazakhstan. Statistical analysis was performed using the chi-square test.
Parents of children with ASD living in cities have higher income and education level compared to those living in rural areas. About 16.3% of the participants belonged to single-parent families, and a third of the families did not own their home. In most cases, only one parent (63.3%) was employed. Additionally, 25.4% of parents, especially mothers, had to quit their jobs, while 18.8% opted to change employment areas or shifts. Insufficient state financial support was reported by 73.3% of respondents, particularly with regard to the costs of education in correctional centers and child treatment, which were statistically significant. Respondents also highlighted the needs for legal advice.
This study offers valuable insights into the current state of care and support for children with ASD in Kazakhstan. The findings emphasize the challenges faced by families in securing appropriate care for their children, particularly in relation to financial burden, limited access to specialists, and the need for comprehensive support systems.
自闭症谱系障碍（ASD）是一种神经发育障碍，表现为沟通、社交能力缺乏或受损以及重复行为。全球范围内，ASD的患病率正在上升。早期识别儿童并提供全面援助对于减轻负担至关重要。我们这项工作的目的是研究哈萨克斯坦自闭症谱系障碍患儿家长在为孩子获取护理方面的当前做法和经验，并确定改善系统性护理的未来方向。
多学科专家团队，包括自闭症谱系障碍患儿的家长，参与了问卷的制定，该问卷旨在找出自闭症谱系障碍患儿综合护理方面的差距。对来自哈萨克斯坦所有地区（包括城市和农村）的390名自闭症谱系障碍患儿家长进行了横断面研究。使用卡方检验进行统计分析。
与农村地区的家长相比，居住在城市的自闭症谱系障碍患儿家长收入和教育水平更高。约16.3%的参与者属于单亲家庭，三分之一的家庭没有自己的住房。在大多数情况下，只有一位家长（63.3%）有工作。此外，25.4%的家长，尤其是母亲，不得不辞职，而18.8%的家长选择更换工作领域或班次。73.3%的受访者表示国家财政支持不足，特别是在教养中心的教育费用和儿童治疗费用方面，这在统计学上具有显著意义。受访者还强调了对法律咨询的需求。
本研究为哈萨克斯坦自闭症谱系障碍患儿护理和支持的现状提供了有价值的见解。研究结果强调了家庭在为孩子获得适当护理方面面临的挑战，特别是在经济负担、获得专科医生服务机会有限以及需要全面支持系统方面。
