What do parents of newborn babies with cleft lip and/or palate want to know? Does the leaflet from the Cleft lip and Palate unit at Red Cross Children’s Hospital fulfil these needs and what is its’ grading for ‘readability’?

Abstract

Objectives: This study was undertaken to ascertain information about parent’s preferences about the Red Cross Hospital’s (RXH) Cleft Lip and Palate Unit patient information leaflet (PIL), and to assess the readability of the English version of this PIL. Design: A descriptive study for the PIL combined with a questionnaire for parents of children born 5 months- 16 years previously. Subjects: Participants were 36 parents of cleft lip/palate (CLP) children who attended appointments at RXH. They had been given the PIL, telephoned two weeks later and asked 15 questions. Outcome measures: The reading statistics, design elements, grading and readability of the PIL were assessed. Parental experiences were recorded on the questionnaire. Results: The PIL is well designed and easy to read. Most parents were informed of their children’s clefts at birth by a physician, gynaecologist or nurse, but felt that the health professionals’ knowledge of CLP was lacking. Inadequate information about feeding was a common finding. Conclusions: The RXH PIL can be read and understood by the average 14- year old. There is parental dissatisfaction with many aspects of CLP care and the PIL is a useful too to improve parents’ understanding of this condition.