Amaral Maíra Ferreira do, Drummond Adriana de França, Coster Wendy J, Mancini Marisa Cotta
Department of Occupational Therapy, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade Federal de Minas Gerais, Av. Antônio Carlos, 6627, Campus UFMG, Pampulha, Belo Horizonte, MG CEP 31270-010, Brazil.
Department of Occupational Therapy, College of Health and Rehabilitation Sciences: Sargent College, Boston University, 635 Commonwealth Avenue, Boston, MA 02215, USA.
Res Dev Disabil. 2014 Feb;35(2):414-22. doi: 10.1016/j.ridd.2013.11.021. Epub 2013 Dec 18.
This cross-sectional study compared patterns of household task participation (e.g., performance, assistance and independence) of youth with cerebral palsy (CP), Down syndrome (DS) and typical development (TD). Parents of 75 children and adolescents were interviewed to report on their youths' active engagement in daily self-care and family-care tasks, using the children helping out: responsibilities, expectations and supports (CHORES) questionnaire. Groups were equivalent in age (mean=9.3 years; SD=2.2 years), sex (male=39; female=36), respondent education, presence of maid, and number of siblings at home, but differed on child cognitive function and family socioeconomic status, with the DS and the CP groups scoring lower than the TD group but not different from each other. ANOVA revealed group differences on CHORES performance of self-care tasks (p=0.004), on total participation score (p=0.04) and on assistance scores (p<0.02). Post hoc comparisons showed that TD group scored higher than CP and DS groups on performance and assistance in self-care tasks and total assistance; TD and CP groups were similar on total performance and assistance in family-care tasks. The groups also differed on independence indices; the TD index was greater than the CP and DS, and the CP index was greater than the DS. Parents from the three groups did not differ on ratings of importance regarding their children's household participation (p=0.416). In spite of observed differences, children and adolescents with CP and DS are actively engaged in daily self-care and family-care tasks; their participation at home is not prevented by the presence of their disabilities.
这项横断面研究比较了患有脑瘫（CP）、唐氏综合征（DS）和发育正常（TD）的青少年在家庭任务参与模式（如执行、协助和独立性）方面的差异。研究人员对75名儿童和青少年的家长进行了访谈，使用“儿童帮忙：责任、期望和支持”（CHORES）问卷来报告他们孩子在日常自我护理和家庭护理任务中的积极参与情况。三组在年龄（平均=9.3岁；标准差=2.2岁）、性别（男性=39名；女性=36名）、受访者教育程度、是否有佣人以及家中兄弟姐妹数量方面相当，但在儿童认知功能和家庭社会经济地位上存在差异，DS组和CP组的得分低于TD组，但两组之间无差异。方差分析显示，三组在自我护理任务的CHORES执行情况（p=0.004）、总参与得分（p=0.04）和协助得分（p<0.02）上存在组间差异。事后比较表明，TD组在自我护理任务的执行和协助以及总协助方面得分高于CP组和DS组；TD组和CP组在家庭护理任务的总执行情况和协助方面相似。三组在独立性指标上也存在差异；TD组的指标大于CP组和DS组，CP组的指标大于DS组。三组家长对孩子参与家庭事务的重要性评分没有差异（p=0.416）。尽管存在观察到的差异，但患有CP和DS的儿童和青少年积极参与日常自我护理和家庭护理任务；他们的残疾并没有妨碍他们在家中的参与。
