Seidenfeld M J, Braitman A, Antley R M
Am J Med Genet. 1980;6(1):9-23. doi: 10.1002/ajmg.1320060104.
Mothers coming for genetic counseling because they have an infant with the Down syndrome (DS) vary in their amount of knowledge about the cause, recurrence risk, and options for dealing with the recurrence risk. The purpose of this work has been to determine some predictors of the variability in mothers' knowledge of the DS before coming to genetic counseling. Data were collected before counseling through a detailed interview concerning mothers' knowledge of the DS, their demographic background, fertility plan, and attitude toward family planing. These data were "reduced" by multiple-regression analysis, to 7 variables used in a prediction equation for mothers' level of pre-knowledge attainment. These variables were then used to construct a model which was tested by path analysis. Results of analyses showed that about 2/3 of the variance in mothers' pre-knowledge of the DS could be accounted for by 5 independent variables: 1) time from diagnosis to counseling session, 2) date of counseling session, 3) nonreporting of emotional upset, 4) education-occupational status (EOS), and 5) utilization of birth control methods. These findings led to the conclusion that what occurs before counseling is of importance for the outcome of genetic counseling, as measured by the genetic information acquired by the counselees. Some precounseling precedures are suggested on how genetic counselors might be able to gain more control over the important factors that occur before actual counseling.
因婴儿患有唐氏综合征(DS)前来进行遗传咨询的母亲们,在对病因、复发风险以及应对复发风险的选择等方面的了解程度上存在差异。这项工作的目的是确定在前来进行遗传咨询之前,母亲们对唐氏综合征认知差异的一些预测因素。在咨询前通过详细访谈收集数据,内容涉及母亲们对唐氏综合征的了解、她们的人口统计学背景、生育计划以及对计划生育的态度。这些数据通过多元回归分析“简化”为7个变量,用于母亲们知识获取水平的预测方程。然后使用这些变量构建一个模型,并通过路径分析进行检验。分析结果表明,母亲们对唐氏综合征的预咨询知识中约2/3的变异可由5个独立变量解释:1)从诊断到咨询的时间,2)咨询日期,3)未报告情绪困扰,4)教育职业状况(EOS),5)节育方法的使用情况。这些发现得出结论,咨询前发生了什么对于遗传咨询的结果很重要,这一结果通过咨询对象获得的遗传信息来衡量。针对遗传咨询师如何能够更好地控制实际咨询前出现的重要因素,提出了一些咨询前的程序建议。