Luijkx J, van der Putten A A J, Vlaskamp C
Department of Special Needs Education and Youth Care, University of Groningen, Groningen, The Netherlands.
Child Care Health Dev. 2017 Jul;43(4):518-526. doi: 10.1111/cch.12446. Epub 2017 Feb 3.
Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children.
Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use.
There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children.
This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision.
抚养患有严重或极重度智力和多重残疾(PIMD)的儿童预计会给父母的时间使用模式带来极大压力。本研究的目的是调查抚养患有PIMD儿童的父母的总时间使用情况,并将其与抚养发育正常儿童的父母的时间使用情况进行比较。
27名抚养患有PIMD儿童的父亲和30名母亲通过手机或平板电脑应用程序完成了一份时间使用日记,抚养发育正常儿童的66名父亲和109名母亲也完成了该日记。进行独立t检验和曼-惠特尼检验以比较平均时间使用情况。
与抚养发育正常儿童的父母相比,抚养患有PIMD儿童的父母在约定时间(有偿工作和教育活动)和必要时间(个人护理、饮食和睡眠)的时间使用上没有差异。抚养患有PIMD儿童的父母与抚养发育正常儿童的父母在投入时间(家务劳动以及对孩子的照顾和监督时间)和自由时间方面存在显著差异。患有PIMD儿童的母亲花在家务上的时间明显少于发育正常儿童的母亲,而花在照顾和监督上的时间更多。
本研究表明,患有PIMD儿童的父母必须在护理任务上花费大量时间,并且平均每天的自由时间比抚养发育正常儿童的父母少1.5小时。这是一个显著的差异,因为休闲时间对幸福感有很大贡献。因此,不仅要考虑患有PIMD儿童的支持需求,还要确定父母在继续照顾和监督孩子日常起居方面需要什么,这很重要。