Berk N W, Marazita M L, Cooper M E
Cleft Palate-Craniofacial Center, University of Pittsburgh School of Dental Medicine, Pennsylvania 15261, USA.
Cleft Palate Craniofac J. 1999 Jan;36(1):30-5. doi: 10.1597/1545-1569_1999_036_0030_mgotcp_2.3.co_2.
This study examined health care professionals' perceptions of parental preferences and preferences of parents of affected children (cleft lip, cleft palate, both, or other craniofacial anomaly) for prenatal testing with respect to oral-facial clefts and craniofacial anomalies.
This was a descriptive study assessing and comparing questionnaire responses of two independent groups.
Healthcare professional participants comprised 570 U.S. members of the American Cleft Palate-Craniofacial Association. Parent participants comprised 97 parents of children seen at the University of Pittsburgh Cleft Palate-Craniofacial Center.
A practitioner survey was developed to examine practitioner perception of parental desire for involvement, desire for knowledge, and reaction to learning of a birth defect. A parent survey was developed to correspond with the practitioner survey.
Health professionals' perceptions of parental preferences often paralleled parental preference data. However, parental responses were found to be significantly different from practitioner perception of parental preferences on one question reflecting desire for involvement (chi2 = 33.35, df=1, p = .001) and on one question reflecting desire for knowledge (chi2 = 4.82, df = 1, p = .03). For both questions, higher percentages of parents responded that they would want this involvement or information.
Findings are consistent with those reported in other studies of prenatal testing preferences and susceptibility. Results suggest that parents of affected children have a strong desire for information and involvement in prenatal testing and counseling decisions. Parents appear to value preparation in spite of acknowledging anxiety associated with prenatal information.
本研究调查了医疗保健专业人员对受影响儿童（唇裂、腭裂、两者皆有或其他颅面畸形）的父母在产前检测方面对于口腔面部裂隙和颅面畸形的偏好以及父母自身的偏好。
这是一项描述性研究，评估和比较两个独立组的问卷回复。
医疗保健专业人员参与者包括570名美国腭裂-颅面协会成员。父母参与者包括97名在匹兹堡大学腭裂-颅面中心就诊儿童的父母。
制定了一份从业者调查问卷，以检查从业者对父母参与意愿、求知欲以及得知出生缺陷后的反应的看法。同时制定了一份与从业者调查问卷相对应的父母调查问卷。
医疗保健专业人员对父母偏好的看法通常与父母偏好数据相符。然而，在反映参与意愿的一个问题（卡方 = 33.35，自由度 = 1，p = .001）和反映求知欲的一个问题（卡方 = 4.82，自由度 = 1，p = .03）上，发现父母的回答与从业者对父母偏好的看法存在显著差异。对于这两个问题，更高比例的父母表示他们希望参与或获取这些信息。
研究结果与其他关于产前检测偏好和易感性的研究报告一致。结果表明，受影响儿童的父母强烈希望获取信息并参与产前检测和咨询决策。尽管承认与产前信息相关的焦虑，但父母似乎重视准备工作。
