Sagi M, Shiloh S, Cohen T
Department of Human Genetics, Hadassah Medical Center, Ein-Kerem, Jerusalem, Israel.
Am J Med Genet. 1992 Oct 1;44(3):326-33. doi: 10.1002/ajmg.1320440312.
Parents of children with cleft lip and/or palate (42 women and 35 men) participated in a study on intentions to use prenatal diagnosis of cleft by ultrasound in subsequent pregnancies. Based on the Health Belief Model (HBM) [Rosenstock, 1974], parents' cognitions on 4 factors were measured by questionnaires: "susceptibility" and "severity perceptions," "benefits" and "barriers" evaluations. Most parents perceived the defect as severe. Over-estimation of recurrence risks was predominant even among parents who had received genetic counseling. Results showed that most parents intend to utilize prenatal diagnosis but do not intend to abort an affected fetus. Subjects' reported reasons represented 3 thematic categories: cognitive (the need to know), emotional, and behavioral. Parents' intentions to diagnose and to terminate were related to the factors predicted by the HBM model. Regression analyses indicated that 38% of the variance in intentions to diagnose and 56% of the variance in intentions to terminate could be explained by the studied variables. The best predictor of both intentions was the perceived benefits of the diagnosis. Implications of these findings for genetic counseling are discussed.
唇腭裂患儿的父母(42名女性和35名男性)参与了一项关于在后续妊娠中使用超声产前诊断唇腭裂意愿的研究。基于健康信念模型(HBM)[罗森斯托克,1974],通过问卷调查测量父母对四个因素的认知:“易感性”和“严重性认知”、“益处”和“障碍”评估。大多数父母认为该缺陷严重。即使在接受过遗传咨询的父母中,对复发风险的高估也很普遍。结果显示,大多数父母打算进行产前诊断,但不打算终止受影响胎儿的妊娠。受试者报告的理由分为三个主题类别:认知(需要了解)、情感和行为。父母的诊断和终止意愿与HBM模型预测的因素相关。回归分析表明,研究变量可以解释38%的诊断意愿差异和56%的终止意愿差异。这两种意愿的最佳预测因素是对诊断益处的认知。讨论了这些发现对遗传咨询的意义。