Experiences of Parents Expecting a Child with a Cleft: A Qualitative Interview Study into Healthcare Provision and Parental Concerns

Abstract

Objective: Having a child with a cleft lip with or without palate (CL ± P) can greatly impact parents’ lives. Retrospective studies have shown that receiving a CL ± P diagnosis is an emotional event, requiring considerable adjustment. However, there has been limited prospective research on how parents experience pregnancy when faced with a prenatal diagnosis of CL ± P. This study aims to examine the experiences of parents during pregnancy, focusing on their concerns and perspectives regarding cleft care, pregnancy, childbirth, and upbringing.
Design: Participants were interviewed between 24 to 39 weeks of gestational age using semi-structured interviews. Data were analyzed using inductive reflexive thematic analysis.
Setting: Interviews took place through a videocall, a phone call or face-to-face, following participants’ preferences. Interviews lasted an average of 33 minutes.
Participants. Eleven expectant mothers and 8 expectant fathers were recruited from the cleft team at a university medical center.
Results: Four main themes were identified: “Suspected diagnosis: An emotional rollercoaster,” “After diagnosis: So much information and healthcare professionals,” “No carefree pregnancy,” and “What will the future bring?”. Receiving a prenatal CL ± P diagnosis was experienced as an emotional rollercoaster, accompanied by numerous uncertainties. Parents reported that the cleft care trajectory did not always optimally support them in emotionally processing the diagnosis.
Conclusions Results highlight a need for specialized cleft care tailored to parental needs and wishes. Specifically, empathetic reactions of healthcare providers are crucial, as well as an additional contact moment for parents before childbirth.