Experiences of parents expecting a child with a cleft: a qualitative interview study into healthcare provision and parental concerns

Abstract

Background and aims: Cleft Lip and/or Palate (CL±P) is a congenital condition that greatly impacts children’s and parents’ lives and requires long-term multidisciplinary care of a specialised cleft team. Little is known on how parents perceive receiving the prenatal diagnosis and the accompanied cleft care during pregnancy. To date, most studies have used a retrospective design and focussed mainly on mothers. The aim of the study is to examine the experiences of parents of children with a prenatal CL±P diagnosis with regards to cleft care and concerns on the pregnancy, childbirth and upbringing.
Methods: Semi-structured interviews were conducted with expecting mothers (n=11) and fathers (n=8). Results were analysed using inductive reflexive thematic analysis at a semantic level.
Findings: Four main themes were identified, namely: “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.
Discussion: Receiving a prenatal diagnosis of CL±P is a highly emotional event. Results highlight the need for specialised cleft care tailored to parental needs and wishes. Specifically, empathetic reactions of healthcare providers are crucial, and we recommend an extra moment of contact at six weeks before childbirth. The cleft care pathway should be optimised to better psychologically support parents.

Date
Oct 9, 2025
Location
Spain
Malaga
Marije van Dalen
Marije van Dalen
Postdoctoral Researcher

My research interests include the mental health and well-being of adolescents with a chronic illness.

Related