黑龙江省孤独症谱系障碍儿童就诊康复及养护现状
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摘要
目的了解黑龙江省孤独症谱系障碍(autism spectrum disorder,ASD)儿童就诊、康复和养护现状,为完善ASD康复教育体系及政策的制定提供科学依据。方法分层整群抽取黑龙江省8所孤独症康复教育机构,采用自拟的"ASD儿童康复教育现状及需求调查表"对357名ASD儿童主要照顾者进行现况调查。结果 ASD儿童发现行为异常的平均年龄为(31.08±12.96)月,首次就诊的平均年龄为(35.88±13.20)月,确诊为ASD的平均年龄为(38.64±13.20)月,开始康复的平均年龄为(43.56±16.08)月。3岁前被确诊以及3岁前到康复机构接受训练的儿童分别占39.0%和32.0%。非户口所在地(异地)康复儿童比例为47.3%,每周康复时间20 h及以上的ASD儿童占73.4%。因儿童的康复问题,父、母工作受影响的比例分别为34.5%,67.8%,差异有统计学意义(χ~2=226.32,P<0.01)。调查对象享受政府惠民项目资金支持的ASD家庭占41.2%。结论黑龙江省ASD儿童确诊时间有延迟,早期康复的患者占比较低,孤独症儿童康复教育资源分布存在明显的地区差异,政府惠民救助项目支持的覆盖率还有待提高。
Objective To understand the status of doctor visit, rehabilitation and foster care of children with autism spectrum disorders in Heilongjiang Province, and to provide a scientific reference for improving ASD rehabitation education system and making the related policies. Methods Eight autism rehabilitation institutions were selected in Heilongjiang Province by stratified cluster sampling, 357 primary caregivers of ASD children participated in the survey by using the questionnaire "ASD Children's Rehabilitation Education Status and Needs". Results The average age of abnormal behavior found of ASD children was(31.08±12.96)months, and the average age of first doctor visit was(35.88±13.20) months, the average age of diagnose was(38.64±13.20) months, and initial rehabilitation was(43.56±16.08)months. The proportion of children who had been diagnosed and have trained in the rehabilitation institutions before the age of 3 years was only 39.0% and 32.0%, respectively. The proportion of rehabilitation out of home town was 47.3%, and rehabilitation >20 hours per week was 73.4%. The proportion of fathers' and mothers' work lives affected was 34.5% and 67.8%, respectively, the differences were of statistical signficance(χ~2=226.32, P<0.01). About 41.2% of ASD families received government financial support. Conclusion The average age of diagnose is late prolonged, and the proportion of children diagnosed and training before the age of 3 years was relatively low. There were obvious regional differences of rehabilitation education resources distributions of ASD in Heilongjiang Province. The results also demonstrate the need to sustain and enhance the coverage rate of the government financial support.
Objective To understand the status of doctor visit, rehabilitation and foster care of children with autism spectrum disorders in Heilongjiang Province, and to provide a scientific reference for improving ASD rehabitation education system and making the related policies. Methods Eight autism rehabilitation institutions were selected in Heilongjiang Province by stratified cluster sampling, 357 primary caregivers of ASD children participated in the survey by using the questionnaire "ASD Children's Rehabilitation Education Status and Needs". Results The average age of abnormal behavior found of ASD children was(31.08±12.96)months, and the average age of first doctor visit was(35.88±13.20) months, the average age of diagnose was(38.64±13.20) months, and initial rehabilitation was(43.56±16.08)months. The proportion of children who had been diagnosed and have trained in the rehabilitation institutions before the age of 3 years was only 39.0% and 32.0%, respectively. The proportion of rehabilitation out of home town was 47.3%, and rehabilitation >20 hours per week was 73.4%. The proportion of fathers' and mothers' work lives affected was 34.5% and 67.8%, respectively, the differences were of statistical signficance(χ~2=226.32, P<0.01). About 41.2% of ASD families received government financial support. Conclusion The average age of diagnose is late prolonged, and the proportion of children diagnosed and training before the age of 3 years was relatively low. There were obvious regional differences of rehabilitation education resources distributions of ASD in Heilongjiang Province. The results also demonstrate the need to sustain and enhance the coverage rate of the government financial support.
引文
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[2] BAIO J,WIGGINS L,CHRISTENSEN D L,et al.Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network,11 Sites,United States,2014[J].MMWR Surveill Summ,2018,67(6):1-23.
[3] Development Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators.Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network,11 sites,United States,2010[J].MMWR Surveill Summ,2014,63(2):1-21.
[4] SUN X,ALLISON C,WEI L,et al.Autism prevalence in China is comparable to Western prevalence[J].Mol Autism,2019,10(7).DOI:10.1186/s13229-018-0246-0.
[5] WANG L Y,ZHANG Y M,REN F H,et al.Investigation of autism rehabilitation service institutions in China[J].Chin J Rehabil Theory Pract,2013,19(11):1099-1100.
[6] CHUNG CY,LIU W Y,CHANG C J,et al.The relationship between parental concerns and final diagnosis in children with developmental delay[J].J Child Neurol,2011,26(4):413-419.
[7] 王建敏,李侠,农铮,等.监护人重视的首个儿童孤独症异常特征及与就诊时间关系的分析[J].中华流行病学杂志,2015,36(10):1077-1080.
[8] 蒙晓梅,江蕙芸,班彩霞.孤独症儿童的就诊情况及其家庭环境影响因素[J].广西医学,2018,40(6):629-632.
[9] BICKEL J,BRIDGEMOHAN C,SIDERIDIS G,et al.Child and family characteristics associated with age of diagnosis of an autism spectrum disorder in a tertiary care setting[J].J Dev Behav Pediatr,2015,36(1):1-7.
[10] 王佳,曹孟儒,周雪,等.孤独症患儿就诊及家庭养护现状调查[J].中国儿童保健杂志,2010,18(10):757-760.
[11] 王丽英,张艳梅,任福会,等.国内孤独症康复服务机构现状调查[J].中国康复理论与实践,2013,19(11):1099-1100.
[12] 中国残疾人联合会.政府购买残疾人服务技术标准与规范(试行)第一册:残疾儿童康复服务[M].北京:华夏出版社,2017:116.
[13] ZWAIGENBAUM L,BAUMAN M L,CHOUEIRI R,et al.Early intervention for children with autism spectrum disorder under 3 years of age:recommendations for practice and research[J].Pediatrics,2015,136(Suppl 1):S60-S81.
[14] 熊超,蒋秋静,李丹,等.儿童孤独症发现与诊疗时间分析[J].中国妇幼保健,2011,26(30):4688-4690.
[15] RIVARD,MéLINA,TERROUX,et al.Effectiveness of early behavioral intervention in public and mainstream settings:the case of preschool-age children with autism spectrum disorders[J].Res Autism Spectrum Dis,2014,8(9):1031-1043.
[16] CRIDLAND E K,JONES S C,MAGEE C A,et al.Family-focused autism spectrum disorder research:a review of the utility of family systems approaches[J].Autism,2014,18(3):213-222.
[17] 杨昱,王曼.学龄前孤独症儿童家庭的职业和经济负担调查[J].中国临床心理学杂志,2014,22(2):295-297.
[18] GNANASEKARAN S,CHOUEIRI R,NEUMEYER A,et al.Impact of employee benefits on families with children with autism spectrum disorders[J].Autism,2016,20(5):616-622.
[19] 胡晓毅,郑群山,徐胜.我国孤独症儿童家庭教育的困境与对策[J].现代特殊教育,2015(22):18-24.
[20] MALJAARS J,BOONEN H,LAMBRECHTS G,et al.Maternal parenting behavior and child behavior problems in families of children and adolescents with autism spectrum disorder[J].J Autism Dev Disord,2014,44(3):501-512.
[21] KIM I,EKAS N V,HOCK R,et al.Associations between child behavior problems,family management,and depressive symptoms for mothers of children with autism spectrum disorder[J].Res Autism Spectrum Dis,2016,26:80-90.
[22] 中华人民共和国中央人民政府.中国残联实施残疾儿童救助项目“七彩梦行动计划”[EB/OL].[2012-03-29].http://www.gov.cnjrzg/2012-03/29/content_2102613.htm.
[23] 中华人民共和国中央人民政府.国务院关于建立残疾儿童康复救助制度的意见[EB/OL].[2012-07-10].http://www.gov.cn/zhengce/content/2018-07/10/content_5305296.htm.