Lenhard Wolfgang, Breitenbach Erwin, Ebert Harald, Schindelhauer-Deutscher H Joachim, Zang Klaus D, Henn Wolfram
Institute of Special Education, Wuerzburg University, Wuerzburg, Germany.
Intellect Dev Disabil. 2007 Apr;45(2):98-102. doi: 10.1352/1934-9556(2007)45[98:AOMTTC]2.0.CO;2.
In 1970, before the introduction of prenatal diagnosis of chromosome anomalies, an unpublished questionnaire study concerning the social and emotional situation of mothers of children with Down syndrome was conducted in southern Germany. To assess the psychosocial impact of the availability of prenatal diagnosis on parents of genetically handicapped children, we re-evaluated and repeated the 1970 study over 30 years later. Although mothers' feelings of guilt for having a child with disabilities remained on a low level, today's mothers have a stronger feeling of being involuntarily segregated in society. On the other hand, they more often experience support and respect from outside, particularly through self-support groups; moreover, tendencies of active withdrawal from social life have decreased.
1970年,在染色体异常的产前诊断方法引入之前,德国南部开展了一项关于唐氏综合征患儿母亲的社会和情感状况的未发表问卷调查研究。为了评估产前诊断的可获得性对患有基因缺陷儿童的父母的心理社会影响,30多年后,我们重新评估并重复了1970年的研究。虽然母亲们因生下残疾孩子而产生的内疚感仍处于较低水平,但如今的母亲们在社会中更强烈地感受到被不由自主地隔离。另一方面,她们更经常地从外界,特别是通过自助团体获得支持和尊重;此外,主动退出社会生活的倾向有所减少。