title: A qualitative description of receiving a diagnosis of clefting in the prenatal or postnatal period.
abstract: This study investigated the experience of receiving a diagnosis of clefting in the prenatal or postnatal period. Open-ended interviews were conducted with 20 parents of children with cleft lip with or without cleft palate. Interviews were transcribed and analyzed using a qualitative descriptive approach with an emphasis on thematic analysis. Common themes emerged from participants' responses regarding the delivery of the diagnosis, preparation for the birth of their child, advantages and disadvantages of prenatal diagnosis, use of the Internet, views on abortion and genetic testing, among other issues. All participants in the prenatal group indicated they were satisfied they learned of the cleft before the birth of their child. Some participants in the postnatal group would rather have received the diagnosis prenatally, while others were content with learning of the diagnosis in the delivery room. Greater awareness of the parental experience of the timing of receiving a cleft diagnosis may assist health care professionals in providing care for these families.
authors.affiliation: Department of Human Genetics, University of Pittsburgh, Pittsburgh, PA 15219, USA.
authors.forename: Rachel
authors.initials: R
authors.lastname: Nusbaum
authors.forename: Robin E
authors.initials: RE
authors.lastname: Grubs
authors.forename: Joseph E
authors.initials: JE
authors.lastname: Losee
authors.forename: Carla
authors.initials: C
authors.lastname: Weidman
authors.forename: Matthew D
authors.initials: MD
authors.lastname: Ford
authors.forename: Mary L
authors.initials: ML
authors.lastname: Marazita
mesh_terms: D000223:Adaptation, Psychological; D002971:Cleft Lip / Q000175:diagnosis*; D002972:Cleft Palate / Q000175:diagnosis*; D019988:Children with Disabilities; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis; D036301:Qualitative Research; D012067:Religion; D012944:Social Support