Briegel W, Hofmann C, Schwab K O
Department of Child and Adolescent Psychiatry and Psychotherapy, Leopoldina Hospital, Schweinfurt, Germany.
Genet Couns. 2007;18(3):267-75.
This study investigates behaviour problems of preschool children with Moebius sequence, and their primary caregivers' stress. To this end, parents of all preschool children with Moebius sequence known to the German Moebius foundation were anonymously asked to fill out questionnaires, e.g. the Child Behavior Checklist [CBCL] 1.5-5. The primary caregivers of 13/22 children (seven males, six females; mean age: 3;10 [2;1-5;11] years) sent back filled-out questionnaires. Two children were rated as clinical on the CBCL-1.5-5. Boys had significantly higher scores on the scales aggressive behavior and total problems than girls. Compared to the general population, but not to other parents of mentally and / or physically handicapped children, the primary caregivers experienced higher levels of stress. In conclusion, preschool children with Moebius sequence do not show essentially increased rates of clinical behaviour problems. Nevertheless, their primary caregivers experience increased stress and need early and adequate support.
本研究调查了患有默比厄斯序列的学龄前儿童的行为问题及其主要照料者的压力状况。为此，德国默比厄斯基金会所知的所有患有默比厄斯序列的学龄前儿童的家长被匿名要求填写问卷，例如儿童行为检查表（CBCL）1.5 - 5。22名儿童中有13名（7名男性，6名女性；平均年龄：3岁10个月[2岁1个月 - 5岁11个月]）的主要照料者寄回了填写好的问卷。在CBCL - 1.5 - 5上，有两名儿童被评定为临床问题。男孩在攻击性行为和总问题量表上的得分显著高于女孩。与一般人群相比，但与其他智力和/或身体残疾儿童的家长相比，主要照料者经历了更高水平的压力。总之，患有默比厄斯序列的学龄前儿童并未表现出临床行为问题发生率的显著增加。然而，他们的主要照料者经历了更大的压力，需要早期且充分的支持。
