Initial counselling for cleft lip and palate: parents' evaluation, needs and expectations

Int J Oral Maxillofac Surg. 2010 Mar;39(3):214-20. doi: 10.1016/j.ijom.2009.12.013. Epub 2010 Jan 15.


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.

MeSH terms

  • Adolescent
  • Attitude to Health*
  • Child
  • Child, Preschool
  • Cleft Lip / etiology
  • Cleft Lip / genetics
  • Cleft Lip / psychology*
  • Cleft Palate / etiology
  • Cleft Palate / genetics
  • Cleft Palate / psychology*
  • Consumer Behavior*
  • Consumer Health Information
  • Counseling*
  • Feeding Methods
  • Humans
  • Infant
  • Infant Care
  • Needs Assessment*
  • Oral Surgical Procedures
  • Parents / psychology*
  • Patient Care Team
  • Prenatal Diagnosis
  • Professional-Family Relations
  • Referral and Consultation
  • Self-Help Groups
  • Social Support
  • Surveys and Questionnaires
  • Young Adult