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

OBJECTIVE

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.

DESIGN

This was a descriptive study assessing and comparing questionnaire responses of two independent groups.

PARTICIPANTS

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.

MAIN OUTCOME MEASURES

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.

RESULTS

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.

CONCLUSIONS

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.