Objective: This study was conducted to record subjective information concerning parental experiences and preferences with regard to informing interviews for cleft lip and/or palate. The analysis of these data was intended to help informants improve the way in which such conversations are conducted.
Methods: The study used a self-administered questionnaire. Study participants were the biological parents of children who had cleft lip and/or palate and were seen in the University of Pittsburgh Cleft Palate-Craniofacial Center.
Results: Results revealed that parents wanted informing health professionals to be in greater control of the informing conversation, to show more caring and confidence, to show more of their own feelings, to give parents more of an opportunity to talk and show feelings, to make a greater effort to comfort parents, to provide more information, to initiate more of a discussion about the association between clefts and mental retardation/learning disabilities, and to provide more referrals to other parents during the informing interview. A positive association between the degree to which parents reported knowing the health professionals and reported satisfaction was identified for 10 dimensions of health professional behavior.
Conclusions: Parents are dissatisfied with several aspects of informing interviews for cleft lip and/or palate. The results of this study suggest ways to improve informing interviews for oral-facial clefts and other congenital anomalies.