A QUALITATIVE DESCRIPTION OF RECEVING A DIAGNOSIS OF CLEFTING IN THE PRENATAL OR POSTNATAL PERIOD

Background: Advances in ultrasound technology have revolutionized obstetrical care and have resulted in a greater number of cases of cleft lip with or without cleft palate diagnosed prenatally by ultrasound. This study investigated the experience of receiving a diagnosis of clefting in the prenatal or postnatal period. Methods: Open-ended interviews were conducted with 20 parents of children with cleft lip with or without cleft palate. Of these parents, 12 experienced a prenatal diagnosis of their child's cleft, while eight received the diagnosis at birth. Interviews were transcribed and analyzed using a qualitative description approach with an emphasis on thematic analysis. Common themes emerged from participant's responses to questions 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, interaction with other parents, among other issues. Findings: Preliminary findings were synthesized into themes that included "shared parental experiences," "coping," "preparation," "disadvantages," and "alternative perspectives." These overarching themes were divided into subthemes. Advantages cited for prenatal diagnosis included having the time to psychologically adjust to the diagnosis, to become informed, to educate other children, to opt for additional testing, and to plan for the baby's needs. Some participants felt a drawback of prenatal diagnosis was an emotional disruption of the pregnancy, while other participants found no disadvantages. All participants in the prenatal group indicated they were glad they learned of the cleft before the birth of their child. Some participants in the postnatal group would have rather received the diagnosis prenatally, while others were satisfied learning of the diagnosis in the delivery room.Interpretation: There seemed to be greater similarities than differences between the two groups of participants. Parents seemed to be affected more by how the diagnosis was delivered than the timing of the diagnosis. A prenatal diagnosis of a cleft may have a negative impact on the pregnancy, nonetheless parents seemed to want this information. High-resolution ultrasound has become standard of care for many pregnant women. Understanding the consequences of prenatal diagnosis is an important contribution to the field of public health