导致土耳其自闭症谱系障碍患儿母亲照料负担加重的因素。
Factors contributing to higher caregiving burden in Turkish mothers of children with autism spectrum disorders.
作者信息
Cetinbakis G, Bastug G, Ozel-Kizil E T
机构信息
Psychology Department, Near East University, Nicosia, Turkish Republic of Northern Cyprus.
Vocational School of Health, Ankara University, Ankara, Turkey.
出版信息
Int J Dev Disabil. 2018 Jun 5;66(1):46-53. doi: 10.1080/20473869.2018.1478630.
OBJECTIVES
The aim of this study was to explore the caregiver burden and related factors such as expressed emotion (EE), social support, life satisfaction, dyadic adjustment, post-traumatic growth, and socio-demographic characteristics of mothers with autism spectrum disorder (ASD) children.
METHODS
Sixty-two mothers of children with autism spectrum disorder and 60 mothers of typically developing children completed the Zarit Burden Scale, the Multidimensional Scale of Perceived Social Support, the Satisfaction with Life Scale, the Dyadic Adjustment Scale, the Expressed Emotion Scale, and the Post-Traumatic Growth Inventory. The Autism Behavior Checklist was used to examine the severity of autistic behaviors. A socio-demographic data form was applied to the subjects. Participants were recruited in Autistic Children Education Center, homes, and workplaces. Correlation analysis, independent-samples -tests, Mann-Whitney and SEM tests were conducted for statistical analyses.
RESULTS
Higher maternal caregiving burden was associated with lower life satisfaction and higher level of disability in Turkish children with ASD. Also, higher life satisfaction of mothers with ASD children was related to higher social support and dyadic adjustment, and lower EE. According to the SEM analysis, disability percentages, autism-related behaviors in children, and poor dyadic adjustment were significant predictors of caregiving burden in these mothers which in turn resulted with higher EE and poor life satisfaction.
CONCLUSIONS
There are several studies that have investigated the distress in parents of children with developmental disabilities in general, but caregiving burden in ASD was not evaluated elsewhere in detail. These mothers need professional guidance and psychosocial support during the parenting process. Further studies that aim to investigate the whole family, including the father and the siblings, are also necessary.
目的
本研究旨在探讨患有自闭症谱系障碍（ASD）儿童的母亲的照顾负担以及相关因素，如情感表达（EE）、社会支持、生活满意度、二元调整、创伤后成长和社会人口学特征。
方法
62名患有自闭症谱系障碍儿童的母亲和60名发育正常儿童的母亲完成了 Zarit 负担量表、多维感知社会支持量表、生活满意度量表、二元调整量表、情感表达量表和创伤后成长量表。使用自闭症行为检查表来检查自闭症行为的严重程度。向受试者发放了一份社会人口学数据表。参与者是在自闭症儿童教育中心、家庭和工作场所招募的。进行了相关分析、独立样本t检验、曼-惠特尼U检验和结构方程模型（SEM）检验以进行统计分析。
结果
在土耳其，患有ASD的儿童中，母亲较高的照顾负担与较低的生活满意度和较高的残疾水平相关。此外，患有ASD儿童的母亲较高的生活满意度与较高的社会支持和二元调整以及较低的情感表达有关。根据结构方程模型分析，残疾百分比、儿童自闭症相关行为以及不良的二元调整是这些母亲照顾负担的重要预测因素，进而导致较高的情感表达和较差的生活满意度。
结论
有几项研究总体上调查了发育障碍儿童父母的痛苦，但在其他地方没有详细评估ASD中的照顾负担。这些母亲在育儿过程中需要专业指导和心理社会支持。旨在调查整个家庭，包括父亲和兄弟姐妹的进一步研究也是必要的。
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