Loader S, Sutera C J, Walden M, Kozyra A, Rowley P T
Department of Medicine, University of Rochester School of Medicine, NY 14642.
Am J Hum Genet. 1991 Mar;48(3):447-51.
Learning during genetic counseling is often below expectations, especially in the context of genetic screening. In this report we describe learning as a result of genetic counseling of 298 pregnant women identified as hemoglobinopathy carriers, 234 with sickle cell trait and 64 with beta-thalassemia trait. Counseling was designed to provide the information needed in a simple, clear, and nondirective manner. A special videotape produced for this purpose provided dramatization and a role model illustrating an appropriate response. After viewing the videotape the counselee had an opportunity to question the counselor and to have any misconceptions corrected. Questionnaires revealed significantly increased knowledge as a result of counseling in each of the three hemoglobinopathy subject areas tested-namely, clinical manifestations, genetics, and prenatal diagnosis. Five factors correlated with higher knowledge scores after counseling-namely, a younger patient age, more years of education, knowledge of having trait before this identification, knowledge of the baby's father having trait before counseling, and having no prior children.
在遗传咨询过程中的学习效果往往低于预期,尤其是在遗传筛查的背景下。在本报告中,我们描述了对298名被鉴定为血红蛋白病携带者的孕妇进行遗传咨询后的学习情况,其中234人携带镰状细胞性状,64人携带β地中海贫血性状。咨询旨在以简单、清晰且非指导性的方式提供所需信息。为此制作的一盘特殊录像带进行了情景再现,并提供了一个展示恰当应对方式的榜样。观看录像带后,受咨询者有机会向咨询师提问并纠正任何误解。问卷调查显示,在测试的三个血红蛋白病主题领域(即临床表现、遗传学和产前诊断)中,咨询后知识水平均有显著提高。咨询后知识得分较高与五个因素相关,即患者年龄较小、受教育年限较长、在此次鉴定之前就知晓自己携带性状、在咨询之前知晓婴儿父亲携带性状以及此前没有孩子。