Since approximately 10 % of counselees coming to genetics clinics are concerned with Down syndrome, the development of short objective measures of knowledge of Down syndrome for evaluation could have widespread application. The purpose of this study was to design efficient, self‐administered questionnaires of simple vocabulary to measure knowledge and understanding of Down syndrome before and after genetic counseling. Twenty‐six previously piloted questions were administered to nurses, graduate students in Medical Genetics, special education teachers, and parents of children with Down syndrome (n = 126). A coefficient alpha of 0.842 indicated strong reliability. The content of the questionnaire was distributed into three categories: genetic knowledge, recurrence risk, and prenatal diagnosis. From the items (1) which had less than 85% correct responses, and (2) which fell into just one of the three categories, 12 questions were selected as a post‐test (coefficient alpha of 0.749). Eight additional questions were then extracted (coefficient alpha of 0.56) as a pretest. The pretest predicted 53.3 % of the variance of the post‐test. The use of these instruments before and after counseling can be an aid in evaluating counseling and in comparing various approaches for effectiveness.
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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