Medical genetics on the cleft palate-craniofacial team: Understanding parental preference

Objective: This study examined health care professionals' perceptions of pa rental preferences and preferences of parents of affected children (cleft l ip, cleft palate, both, or other craniofacial anomaly) for prenatal testing with respect to oral-facial clefts and craniofacial anomalies. Design: This was a descriptive study assessing and comparing questionnaire responses of two independent groups. Participants: Healthcare professional participants comprised 570 U.S. membe rs of the American Cleft Palate-Craniofacial Association. Parent participan ts comprised 97 parents of children seen at the University of Pittsburgh Cl eft Palate-Craniofacial Center. Main Outcome Measures: A practitioner survey was developed to examine pract itioner 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. Results: Health professionals' perceptions of parental preferences often pa ralleled parental preference data. However, parental responses were found t o be significantly different from practitioner perception of parental prefe rences on one question reflecting desire for involvement (chi(2) = 33.35, d f = 1, p = .001) and on one question reflecting desire for knowledge (chi(2 ) = 4.82, df = 1, p = .03). For both questions, higher percentages of paren ts responded that they would want this involvement or information. Conclusions: Findings are consistent with those reported in other studies o f prenatal testing preferences and susceptibility. Results suggest that par ents of affected children have a strong desire for information and involvem ent in prenatal testing and counseling decisions. Parents appear to value p reparation in spite of acknowledging anxiety associated with prenatal infor mation.