Byiers Breanne J, Tervo Raymond C, Feyma Timothy J, Symons Frank J
1Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA.
J Child Neurol. 2014 Apr;29(4):526-9. doi: 10.1177/0883073812470736. Epub 2013 Jan 9.
Data were collected parenting stress, adaptive behavior, pain, and health issues from the caregivers of 35 girls and women with Rett syndrome (mean age = 20.3). A majority (60%) of parents reported stress in the clinical range on at least 1 subscale of the Parenting Stress Index-Short Form. Seizures and uncertainty about their daughter's gastrointestinal pain experience were significantly associated with higher levels of parenting stress. No other child factors (adaptive behavior, age, residential status) were significantly related to parenting stress. Factors related to chronic health concerns (seizures, ambiguous pain presentation) may be important when considering family stress issues in relation to general outcomes for girls with Rett syndrome and related developmental disorders.
收集了35名患有雷特综合征的女孩和女性照顾者的育儿压力、适应性行为、疼痛及健康问题的数据（平均年龄 = 20.3岁）。大多数（60%）家长报告称，在《育儿压力指数简表》的至少一个分量表上，压力处于临床范围内。癫痫发作以及女儿胃肠道疼痛体验的不确定性与更高水平的育儿压力显著相关。没有其他儿童因素（适应性行为、年龄、居住状况）与育儿压力显著相关。在考虑与雷特综合征及相关发育障碍女孩的总体结局相关的家庭压力问题时，与慢性健康问题相关的因素（癫痫发作、疼痛表现不明确）可能很重要。
