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普拉德-威利综合征患者母亲的生活满意度

Life Satisfaction Among Mothers of Individuals with Prader-Willi Syndrome.

作者信息

Shivers Carolyn M, Leonczyk Caroline L, Dykens Elisabeth M

机构信息

Department of Human Development, Virginia Tech, 358 Wallace Hall, Blacksburg, VA, 24061, USA.

Vanderbilt Kennedy Center for Research on Human Development, Vanderbilt University, Nashville, TN, USA.

出版信息

J Autism Dev Disord. 2016 Jun;46(6):2126-2137. doi: 10.1007/s10803-016-2741-5.

Abstract

Mothers of individuals with Prader-Willi syndrome (PWS) often experience numerous stressors, even when compared to mothers of children with other intellectual and developmental disabilities. Despite this, these mothers show great variability in self-reported life satisfaction. Using data from a longitudinal study of individuals with PWS and their families, the present study analyzed factors related to maternal life satisfaction, both cross-sectionally and over time. Results show that both child factors (e.g., behavior problems, hyperphagia) and maternal factors (e.g., stress, coping style) were significantly related to maternal life satisfaction. However, none of the tested variables predicted change in life satisfaction over time. Research and practice implications are discussed.

摘要

普拉德-威利综合征(PWS)患者的母亲常常面临诸多压力源,即便与其他智力和发育障碍儿童的母亲相比也是如此。尽管如此,这些母亲在自我报告的生活满意度方面表现出很大差异。本研究利用对PWS患者及其家庭的纵向研究数据,从横断面和随时间变化两个角度分析了与母亲生活满意度相关的因素。结果表明,儿童因素(如行为问题、食欲亢进)和母亲因素(如压力、应对方式)均与母亲生活满意度显著相关。然而,所测试的变量均未预测出生活满意度随时间的变化。文中讨论了研究和实践意义。

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