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匈牙利自闭症患者父母的生活质量。

Quality of Life in Hungarian Parents of Autistic Individuals.

作者信息

Volgyesi-Molnar Marta, Gyori Miklos, Eapen Valsamma, Borsos Zsofia, Havasi Agnes, Jakab Zoltan, Janoch Laszlone, Nemeth Vivien, Oszi Tamasne, Szekeres Agota, Stefanik Krisztina

机构信息

Hungarian Academy of Sciences - ELTE University 'Autism in Education' Research Group, Budapest, Hungary.

Faculty of Special Education, Institute of Special Needs Education for People with Atypical Behaviour and Cognition, ELTE University, Budapest, Hungary.

出版信息

J Autism Dev Disord. 2025 Mar;55(3):1122-1137. doi: 10.1007/s10803-024-06243-3. Epub 2024 Jan 27.

Abstract

PURPOSE

Parents of autistic individuals have been known to have a lower overall quality of life (QQL) than those of typically developing children. We present the first Hungarian large-sample study whose objective was to explore the differences in QOL between parents of autistic individuals (AS) and those of neurotypical (NT) persons.

METHODS

Based on the ABCX model we developed a questionnaire comprising standardized scales to characterize the life of parents involved. Our data came from parents of 842 individuals (ASD = 521, NT = 321) between 0 and 49 years. Battery deployed standardized instruments to examine quality of life (WHO-QQL BREF and Quality of Life in Autism questionnaire, QOLA). We assessed the families' socio-economic/demographic characteristics, parents' psychological well-being, the autistic/neurotypical individuals' characteristics, and the interventions.

RESULTS

Our data showed significantly lower QOL in parents of autistic individuals in all domains of questionnaires. We analyzed 20 relevant factors to uncover the predictors of parental QOL. We confirmed the existence of most but not all predictors present in earlier literature and identified intervention-related predictors.

CONCLUSION

Our study confirms the importance of supporting parents in their role, and of providing health and social supports that focus on quality of life, in addition to child care.

摘要

目的

众所周知,自闭症患者的父母总体生活质量(QQL)低于正常发育儿童的父母。我们开展了匈牙利首个大样本研究,旨在探讨自闭症患者(AS)父母与神经典型(NT)者父母在生活质量上的差异。

方法

基于ABCX模型,我们编制了一份包含标准化量表的问卷,以描述相关父母的生活状况。我们的数据来自842名0至49岁个体的父母(自闭症谱系障碍[ASD]=521名,神经典型[NT]=321名)。测评组使用标准化工具来考察生活质量(世界卫生组织生活质量简表[WHO-QQL BREF]和自闭症生活质量问卷[QOLA])。我们评估了家庭的社会经济/人口统计学特征、父母的心理健康状况、自闭症/神经典型个体的特征以及干预措施。

结果

我们的数据显示,自闭症患者父母在问卷所有领域的生活质量均显著较低。我们分析了20个相关因素,以找出父母生活质量的预测因素。我们证实了早期文献中存在的大多数但并非所有预测因素,并确定了与干预相关的预测因素。

结论

我们的研究证实了支持父母发挥其作用以及除儿童照料外提供注重生活质量的健康和社会支持的重要性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/aa87/11828818/11ab09e0b289/10803_2024_6243_Fig1_HTML.jpg

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