Concerns of Parents of Children with Cleft Lip/Palate

For the purpose of obtaining guidance of appropriate advice for parents of children with a cleft lip and/or palate, we conducted a questionnaire survey on cleft-related concerns using a procedure similar to the 1993 report by Miura, et al. Two hundred parents participated in the survey whose children were under the care of Showa University Cleft Palate Team. The children were aged between 0 and 12 years. Thirty seven children had a cleft lip (and alveolus), one hundred and twenty a cleft lip and palate, and forty three isolated cleft palate.<br>The parents were asked to select three items of most concern from thirty cleft-related items listed in the questionnaire and then were asked to ranking those selections from 1 to 3. In order to analyze the collected data, the 30 items were divided into the following 15 groups; sucking/feeding, development, surgery, speech, ear-nose disorders, malocclusion, appearance, social adaptation/personality, academic advancement/employment, marriage/birth, heredity, notification, X-ray studies, medical costs, and others. The results were as follows;<br>1. Among 15 groups, malocclusion was selected as the primary concern by 21% of the 200 parents, surgery by 18%, speech by 17%, and notification by 11.5%.<br>2. The parents showed a tendency to select those items related to care which is necessary for their own children now or in the future and their selections exhibited a strong association to the children's age and the type of cleft.<br>3. The concerns of the parents were the same when compared with the survey in 1993 which ranked the concerns from first to seventh. However a reduced tendency was evident in relation to heredity and an increased tendency in speech and notification.<br>4. Parents of children with cleft lip and/or palate are always considered to need advice not only about the treatment of each specialty from a professional in a cleft palate team but also about the overall treatment plan for their children. It is obvious that they require further improvement of cleft care as well as support from a psychosocial point of view.