孤独症儿童家长社会支持需求与现状研究

Study on demands of social support and status of parents with autistic child

目的：调查儿童孤独症病残家庭的社会支持需求与状况,为解决孤独症儿童家庭面临的各种压力和困难提供科学依据。方法：自行设计问卷辅以社会支持量表,于2012年3月～2013年7月对孤独症儿童家长（孤独症组）和普通儿童家长（对照组）进行问卷调查。使用EpiData3.0和Excel进行数据录入和整理,采用SPSS 13.0进行统计分析。结果：孤独症组对社会支持的需求明显强于对照组（98.95%,78.04%,P〈0.01）。尽管孤独症组在孩子患病后得到过的社会支持明显高于对照组（79.11%,47.65%,P〈0.01）,但需求得不到满足的比例仍然高于对照组（26.55%,16.00%,P〈0.05）。孤独症组的客观支持得分（8.29,9.64,P〈0.01）、主观支持得分（18.57,22.47,P〈0.01）、总分（34.26,39.79,P〈0.01）均显著低于普通家庭组。孤独症组得到社会机构的支持显著高于普通家庭组（47.26%,3.60%,P〈0.01）,目前主要来自残联为主的政府部门,民营基金和机构也开始发挥作用。结论：孤独症儿童家长与普通儿童家长相比,承受更多的生活和心理压力,对社会支持的需求更加强烈。尽管已有相关部门和民间机构提供社会支持,仍不能满足需求。建议进一步完善社会支持系统,更好地发挥民间机构的作用,为孤独症儿童的康复和养育提供良好的社会支持。

Objective：To provide scientific evidence for solving all kinds of pressure and difficult of parents with autistic child by investigating demand of social support and status.Methods：Using self-designed questionnaire and Social Support Scale to investigate parents in two groups：parents with autistic child were in research group and parents with normal child were in control group.Data was inputted and collated using EpiData 3.0 and Excel,and statistical analysis was done using Spss 13.0 software.Results：Parents with autistic child need more demands of social support than that of parents with normal child（98.95%,78.04%,P〈0.01）.Although the parents in research group gained much more social support than that of control group（79.11%,47.65%,P〈0.01）,the proportion of unsatisfied demands in research group was still higher than that of control group（26.55%,16.00%,P〈0.05）.Objective support score,subjective support score and overall score of research group（8.29,18.57,34.26,） were all significantly lower than that of control group（9.64,22.47,39.79,P〈0.01）.While the rate of social support of the research group was significantly higher than that of control group（47.26%,3.60%,P〈0.01）.The social support was mainly provided by the CDPF（China Disabled Persons Federation） as well as some social funds and organizations.Conclusion：Compared to parents with normal child,parents with autistic child will suffer from higher life and mental pressure,so they needed more social support.The present support from government and social organizations is valid but inadequate.So it is necessary to improve the social support system for autistic children rehabilitation and being brought up.