Related Experiment Videos
Medical genetics on the cleft palate-craniofacial team: understanding parental preference
N W Berk1, M L Marazita, M E Cooper
1Cleft Palate-Craniofacial Center, University of Pittsburgh School of Dental Medicine, Pennsylvania 15261, USA. nwb@cpc.pitt.edu
Summary
Parents of children with oral-facial clefts desire more involvement and information in prenatal testing than healthcare professionals perceive. This highlights a need for better communication regarding prenatal diagnosis and counseling for craniofacial anomalies.
Area of Science:
- Medical Genetics
- Pediatric Dentistry
- Obstetrics
Background:
- Prenatal testing for craniofacial anomalies like cleft lip and palate is common.
- Understanding parental preferences and healthcare provider perceptions is crucial for effective counseling.
- Discrepancies in perceived versus actual preferences can impact patient care.
Purpose of the Study:
- To compare healthcare professionals' perceptions of parental preferences with actual parental preferences for prenatal testing.
- To investigate desires for involvement and information among parents of children with craniofacial anomalies.
- To assess healthcare providers' understanding of parental reactions to prenatal diagnosis.
Main Methods:
- A descriptive study comparing questionnaire responses from two independent groups: healthcare professionals and parents of affected children.
- Surveys were developed to assess perceptions of parental desire for involvement, knowledge, and reaction to birth defect diagnosis.
- Participants included 570 U.S. members of the American Cleft Palate-Craniofacial Association and 97 parents from a specialized cleft center.
Main Results:
- Healthcare professionals' perceptions generally aligned with parental preferences.
- Significant differences emerged regarding parental desire for involvement (p = .001) and desire for knowledge (p = .03).
- Parents reported a higher desire for involvement and information than perceived by healthcare providers.
Conclusions:
- Parents of children with clefts and craniofacial anomalies exhibit a strong desire for information and active participation in prenatal testing decisions.
- Parents value preparation for diagnosis, even acknowledging associated anxiety.
- Findings underscore the importance of aligning healthcare provider perceptions with parental preferences in prenatal counseling.