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n South African Journal of Child Health - What do parents of newborn babies with cleft lip and / or palate want to know?
Objectives. This study was undertaken to ascertain information about parents' attitudes to the Cleft Lip and Palate Parent Information Leaflet (PIL) used at Red Cross War Memorial Children's Hospital, Cape Town, 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 children with cleft lip and / or palate (CLP) who attended appointments at Red Cross Hospital. They had been given the PIL, and were telephoned 2 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 health professionals' knowledge of CLP was lacking. Inadequate information about feeding was common.
Conclusions. The Cleft Lip and Palate PIL can be read and understood by the average 14-year-old. There is parental dissatisfaction with aspects of CLP care, and the PIL is useful to improve parents' understanding of this condition.
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