Forty-seven mothers of children with Down syndrome were evaluated on their knowledge of genetic facts pertaining to Down syndrome. We found that more knowledge of this disorder was acquired by counselees before counseling than from counseling. The data show that counseling is most effective in enhancing counselees' knowledge of general genetics, ie, the origin of the extra chromosome in a child with Down syndrome. In contrast, counselees had the most difficulty in learning the recurrence risks for others, including the risks for relatives, siblings, and the population in general. A finding of practical importance is that formal education is inversely related to the amount of information counselees learned from counseling. Mothers with less than a high school education acquired most of their genetic knowledge from counseling, while those with more than a high school education acquired most of this information before counseling.
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.
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