培智学生家长对脆性X综合征知信行调查  

Analysis on knowledge,attitude,behavior about fragile X syndrome among parents with mentally retarded students

作　　者：孙军玲[1] 季成叶[1] 熊妮娜[1] 张悦[1] 王嘉[1] 

机构地区：[1]北京大学儿童青少年卫生研究所,北京100083

出　　处：《中国公共卫生》2007年第2期140-141,共2页Chinese Journal of Public Health

基　　金：973国家科技部重点攻关课题(2001CB510310);2003年教育部博士点基金课题资助(20030001043)

摘　　要：目的了解培智学校学生家长对脆性X综合征的认知状况,为进一步对此病的高危筛查提供基础信息。方法对北京、天津市区各6所培智学校的822名学生家长进行问卷调查,内容包括对脆性X综合征的认识、态度和将采取的行动等。结果95%以上家长未听说过脆性X综合征,对此病的表现、危害等了解很少。88.2%家长愿意学习脆性X综合征的有关知识,如病因、治疗等。85%左右的家长愿意带孩子做相关的诊断和遗传咨询。结论培智学校学生家长对脆性X综合征的了解很少,但对此病的高危筛查接受性高。Objective To understand the knowledge, attitude and behavior about fragile X syndrome among the parents of mentally retarded students, so as to provide basic data for further screening population at high risk. Methods 822 parents with children from special education schools in Beijing and Tianjin were investigated through questionnaire survey. Results More than 95 % parents didn＇t heard of fragile X syndrome, with little knowledge about the cause and clinical feature. 88.2 % parents were willing to learn the related information, such as its cause, treatment/rehabilitative methods. And about 85 % parents would like to take their children to examine the disease and follow a genetic consultation. Conclusion The parents with mentally retarded students knew little about the fragile X syndrome, but whose acceptability of screening was high.

关 键 词：脆性X综合征 高危人群 筛查接受性 

分 类 号：R179[医药卫生—妇幼卫生保健]