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目的研究孤独症谱系障碍(ASD)儿童家长压力及相关影响因素,为缓解育儿压力及提升干预疗效提供依据。方法选取复旦大学附属儿科医院儿保科首次诊断为ASD患儿家长为研究对象,并将同期诊断的精神发育迟缓/言语障碍和正常儿童家长作为对照组,分析不同组家长育儿压力的差异。采用家长育儿压力简表(PSI-SF)对家长压力值进行评定,一般育儿信息问卷调查相关育儿压力因素,0~6岁发育筛查测试(DST)评估ASD儿童发育商。结果多数入组的ASD儿童伴随发育迟缓,存在智力及社会适应发育落后的几率高于运动发育。ASD组儿童家长在压力总分、亲子互动失调及困难儿童分量表得分显著高于精神发育迟缓/言语障碍儿童组家长及正常儿童家长(总分:100.67±15.08vs 93.19±13.85vs 82.61±17.68,F=43.85,P<0.05)。孤独症家长在育儿愁苦分量表压力值高于正常儿童家长(33.34±7.07vs 29.77±7.47,P<0.05),与精神发育迟缓/言语障碍儿童组家长的差异不显著。增加父亲带养时间以及家庭经济收入,父母拥有更高的文化程度能帮助缓解家长育儿压力。结论 1)多数ASD儿童伴随发育迟缓,其家长承受着更高的育儿压力。2)增加父亲带养时间、引导父亲更多参与家庭干预,政府、社会对ASD儿童及家长投入更多的资金与教育支持,将对缓解患儿家长育儿压力以及提升干预疗效具有重要的作用。
Objective To study the parental stress and related factors in children with autism spectrum disorder (ASD), and to provide basis for alleviating the pressure on child-raising and improving the therapeutic effect. Methods The parents of children with ASD were selected as the study objects for the first time by the Pediatrics Department of Pediatric Hospital Affiliated to Fudan University. The difference of parental pressure among different groups of parents was analyzed using the parents of parents with mental retardation / speech impairment and normal children diagnosed at the same period as the control group. PSI-SF was used to assess the value of parental stress, the factors related to parental stress in general parental information questionnaire, and the developmental screening test (DST) of 0-6 years old to evaluate ASD child development. Results Most of the children with ASD were accompanied by stunting. There was a higher risk of mental retardation and social adaptation than that of exercise development. Children in ASD group had significantly higher score on scores of stress, parent-child interaction disorder and children with disabilities than parents of parents of mental retardation / speech impairment group and parents of normal children (Total score: 100.67 ± 15.08 vs 93.19 ± 13.85 vs 82.61 ± 17.68, F = 43.85, P <0.05). Parents of autistic children had higher stress scores in their child-care-depressive children scale than those of normal children (33.34 ± 7.07 vs 29.77 ± 7.47, P <0.05), but not significantly different from those of parents of mental retardation / speech impairment children. Increasing the father’s parenting time and the family’s financial income, parents have a higher education level can help alleviate the parental pressure on parenting. Conclusions 1) Most ASD children are accompanied by stunting, and their parents are under higher parental stress. 2) Increasing the father’s time of bringing support and guiding his father to participate more in family intervention. The government and society invest more funds and education support for ASD children and parents, which will play an important role in alleviating the parental pressure and improving the intervention efficacy.