title: Initial counselling for cleft lip and palate: parents' evaluation, needs and expectations.
abstract: During the first counselling after the birth of a child with cleft lip and palate (CLP) information about the malformation should be delivered and a long-standing relationship between the cleft team and the affected family must be established. The present study was conducted to evaluate the parents' experiences, needs and expectations with this first consultation. A questionnaire was sent to 105 parents at the cleft clinic, which could be answered anonymously. It collected demographic data, data on the parents' pre-existing level of information and the parents' assessment of the counselling at the cleft centre. Seventy percent of the questionnaires were returned. In 16% the clefts were diagnosed prenatally, in 32% there were relatives with clefts. Seventy-one percent of the parents received detailed counselling, 89% of which occurred in the first week. The parents requested that information about surgery (80%), feeding the child (63%) and the aetiology of clefts (44%) should be given. The quality of the consultation was rated very good or good by 87% of families. This study confirms the importance of initial counselling for CLP. The exceptional psychological situation of the family has to be considered and a close collaboration between cleft centre and maternity hospitals is mandatory.
authors.affiliation: Clinic for Oral and Maxillofacial Surgery, Luzerner Kantonsspital, Lucerne, Switzerland. johannes.kuttenberger@ksl.ch <johannes.kuttenberger@ksl.ch>
authors.forename: J
authors.initials: J
authors.lastname: Kuttenberger
authors.forename: J N
authors.initials: JN
authors.lastname: Ohmer
authors.forename: E
authors.initials: E
authors.lastname: Polska
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D002971:Cleft Lip / Q000209:etiology / Q000235:genetics / Q000523:psychology*; D002972:Cleft Palate / Q000209:etiology / Q000235:genetics / Q000523:psychology*; D003258:Consumer Behavior; D054626:Consumer Health Information; D003376:Counseling; D005248:Feeding Methods; D006801:Humans; D007223:Infant; D007224:Infant Care; D020380:Needs Assessment; D019647:Oral Surgical Procedures; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team; D011296:Prenatal Diagnosis; D011368:Professional-Family Relations; D012017:Referral and Consultation; D012657:Self-Help Groups; D012944:Social Support; D011795:Surveys and Questionnaires; D055815:Young Adult