{"title":"匈牙利自闭症患者父母的生活质量。","authors":"Marta Volgyesi-Molnar, Miklos Gyori, Valsamma Eapen, Zsofia Borsos, Agnes Havasi, Zoltan Jakab, Laszlone Janoch, Vivien Nemeth, Tamasne Oszi, Agota Szekeres, Krisztina Stefanik","doi":"10.1007/s10803-024-06243-3","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":"1122-1137"},"PeriodicalIF":3.2000,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11828818/pdf/","citationCount":"0","resultStr":"{\"title\":\"Quality of Life in Hungarian Parents of Autistic Individuals.\",\"authors\":\"Marta Volgyesi-Molnar, Miklos Gyori, Valsamma Eapen, Zsofia Borsos, Agnes Havasi, Zoltan Jakab, Laszlone Janoch, Vivien Nemeth, Tamasne Oszi, Agota Szekeres, Krisztina Stefanik\",\"doi\":\"10.1007/s10803-024-06243-3\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":15148,\"journal\":{\"name\":\"Journal of Autism and Developmental Disorders\",\"volume\":\" \",\"pages\":\"1122-1137\"},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2025-03-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11828818/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Autism and Developmental Disorders\",\"FirstCategoryId\":\"102\",\"ListUrlMain\":\"https://doi.org/10.1007/s10803-024-06243-3\",\"RegionNum\":2,\"RegionCategory\":\"心理学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/27 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"PSYCHOLOGY, DEVELOPMENTAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Autism and Developmental Disorders","FirstCategoryId":"102","ListUrlMain":"https://doi.org/10.1007/s10803-024-06243-3","RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/27 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"PSYCHOLOGY, DEVELOPMENTAL","Score":null,"Total":0}
引用次数: 0
摘要
目的：众所周知，自闭症患者父母的整体生活质量（QQL）低于发育正常儿童的父母。我们在匈牙利进行了首次大样本研究，旨在探讨自闭症患者（AS）的父母与神经畸形患者（NT）的父母在 QOL 方面的差异：根据 ABCX 模型，我们编制了一份由标准化量表组成的调查问卷，以描述相关父母的生活特征。我们的数据来自 842 名 0 至 49 岁儿童的父母（ASD = 521 人，NT = 321 人）。电池采用标准化工具（WHO-QQL BREF 和自闭症生活质量问卷 QOLA）来检测生活质量。我们评估了家庭的社会经济/人口特征、父母的心理健康状况、自闭症/神经症患者的特征以及干预措施：结果：我们的数据显示，自闭症患者父母在所有问卷领域的 QOL 都明显较低。我们对 20 个相关因素进行了分析，以找出影响父母 QOL 的预测因素。我们证实了早期文献中存在的大多数预测因素，但并非所有预测因素，并确定了与干预相关的预测因素：我们的研究证实了支持父母扮演好他们的角色的重要性，以及在儿童护理之外提供注重生活质量的健康和社会支持的重要性。
Quality of Life in Hungarian Parents of Autistic Individuals.
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.
期刊介绍：
The Journal of Autism and Developmental Disorders seeks to advance theoretical and applied research as well as examine and evaluate clinical diagnoses and treatments for autism and related disabilities. JADD encourages research submissions on the causes of ASDs and related disorders, including genetic, immunological, and environmental factors; diagnosis and assessment tools (e.g., for early detection as well as behavioral and communications characteristics); and prevention and treatment options. Sample topics include: Social responsiveness in young children with autism Advances in diagnosing and reporting autism Omega-3 fatty acids to treat autism symptoms Parental and child adherence to behavioral and medical treatments for autism Increasing independent task completion by students with autism spectrum disorder Does laughter differ in children with autism? Predicting ASD diagnosis and social impairment in younger siblings of children with autism The effects of psychotropic and nonpsychotropic medication with adolescents and adults with ASD Increasing independence for individuals with ASDs Group interventions to promote social skills in school-aged children with ASDs Standard diagnostic measures for ASDs Substance abuse in adults with autism Differentiating between ADHD and autism symptoms Social competence and social skills training and interventions for children with ASDs Therapeutic horseback riding and social functioning in children with autism Authors and readers of the Journal of Autism and Developmental Disorders include sch olars, researchers, professionals, policy makers, and graduate students from a broad range of cross-disciplines, including developmental, clinical child, and school psychology; pediatrics; psychiatry; education; social work and counseling; speech, communication, and physical therapy; medicine and neuroscience; and public health.
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