title: Parental evaluation of informing interviews for cleft lip and/or palate.
abstract: 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.
authors.affiliation: Department of Genetics, Magee-Womens Hospital, Pittsburgh, Pennsylvania, USA.
authors.forename: Abigail L
authors.initials: AL
authors.lastname: Byrnes
authors.forename: Nancy W
authors.initials: NW
authors.lastname: Berk
authors.forename: Margaret E
authors.initials: ME
authors.lastname: Cooper
authors.forename: Mary L
authors.initials: ML
authors.lastname: Marazita
mesh_terms: D002971:Cleft Lip; D002972:Cleft Palate; D030881:Disclosure; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009774:Obstetrics; D010290:Parents; D010372:Pediatrics; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires