Parental experiences of cleft lip and palate services

Abstract In 1995 a cleft liaison service was developed in a health and social care trust which comprises primary and secondary care. The service team includes hospital and community midwives, health visitors and a consultant orthodontist who had a particular interest, and experience in the care of children born with a cleft and often this work was in addition to their existing roles. Anecdotal evidence indicated that the service was of great help to parents but it had never been formally evaluated. Therefore this evaluation was designed to explore the needs and views of parents who had a baby or child with a cleft of the lip and or palate, using a qualitative, cross sectional approach. Following 20 parents interviews responses were recorded, transcribed and a content analysis completed. Three main themes emerged relating to the parents’ emotional experiences, their need for information and their experience of caring for a child with a cleft. This study has provided insight into the service delivered by the team and reiterates the need for retaining, maintaining and expanding this specialist service to other localities. Updating midwifery and health visiting staff in terms of knowledge and expertise was implicit to provide a responsive service to meet the needs of the child and family.