【摘要】：目的:調(diào)查評估中國城市學齡前孤獨癥兒童家庭面臨的職業(yè)和經(jīng)濟負擔。方法:對235個孤獨癥兒童家庭和235個典型發(fā)育兒童家庭進行了調(diào)查。使用自制的調(diào)查問卷收集職業(yè)和經(jīng)濟負擔的相關(guān)資料。使用Zarit護理負擔量表(ZBI)調(diào)查了兒童的照顧負擔。結(jié)果:33%孤獨癥兒童的父母反映,兒童的照顧問題嚴重影響了他們的職業(yè);而對照組僅有6%的父母反映存在上述問題。孤獨癥組的職業(yè)受損風險至少為對照組的7倍(OR:7.791;95%CI:4.232-14.345)。孤獨癥組的年收入顯著低于對照組($81,000 VS$112,039,P0.001),年平均損失收入為$30,957元,使其更難位于高收入家庭的行列(OR:0.319;95%CI:0.220-0.462)。孤獨癥家庭用于兒童教育培訓的年平均費用顯著高于對照組($44,130 VS$15,193,P0.001)�？鄢逃嘤栙M用后,孤獨癥家庭的純收入僅為對照組的38%,組間差異具有顯著性(P0.001)。結(jié)論:孤獨癥會給學齡前兒童家庭帶來沉重的職業(yè)和經(jīng)濟負擔。有必要投入更多的社會和醫(yī)療資源以支持這些家庭。
[Abstract]:Objective: to investigate and evaluate the occupational and economic burden faced by families of preschool autistic children in urban China. Methods: 235 families of autistic children and 235 families of typical developmental children were investigated. A self-made questionnaire was used to collect relevant data on occupational and economic burden. The care burden of children was investigated by Zarit nursing burden scale (ZBI). Results: 33% of the parents of autistic children reported that the care problems of the children seriously affected their occupation, while only 6% of the parents in the control group reported the above problems. The risk of occupational damage in the autistic group was at least 7 times higher than that in the control group (OR:7.791;95%CI:4.232-14.345). The annual income of autistic group was significantly lower than that of control group ($81000 VS$112,039,P0.001), and the average annual loss of income was $30957 yuan, which made it more difficult to be located in the ranks of high-income families (OR:0.319;95%CI:0.220-0.462). The average annual cost of children's education and training in autistic families was significantly higher than that in the control group ($44130 VS$15,193,P0.001). After deducting the cost of education and training, the net income of autistic families was only 38% of that of the control group, and there was significant difference between the two groups (P0.001). Conclusion: autism can bring heavy occupational and economic burden to preschool children's families. It is necessary to invest more social and medical resources to support these families.
【作者單位】： 中國醫(yī)科大學附屬第一醫(yī)院血管外科;中國醫(yī)科大學附屬第一醫(yī)院精神科;
【分類號】：R749.94

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