title: Scandcleft randomised trials of primary surgery for unilateral cleft lip and Palate: 9. Parental report of social and emotional experiences related to their 5-year-old child's cleft diagnosis.
abstract: OBJECTIVE
  Parents of children with a cleft lip and palate may be emotionally affected by the child's diagnosis. Their experiences and perceptions are important when evaluating the complexity of satisfactory treatment outcomes. The objective was to examine parents' social and emotional experiences related to their child's cleft diagnosis, and their perceptions of the child's adjustment to living with a visible difference.
  
  
  METHODS
  International multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK.
  
  
  METHODS
  A cohort of 448 children born with a non-syndromic UCLP were included. A total of 356 parents completed the Scandcleft Parent Questionnaire.
  
  
  RESULTS
  The majority of parents experienced practical and emotional support from family, friends, and health professionals. Nevertheless, parents had to cope with other people's reactions to the cleft, experiences that were described as ranging from hurtful to neutral and/or positive. According to parents, 39% of the children had experienced cleft-related comments and/or teasing. More than half of the parents reported specific worries related to their child's future.
  
  
  CONCLUSIONS
  While the majority of the parents experienced positive support and coped well with the child's diagnosis, some parents were at risk for psychological and emotional challenges that should be identified by the cleft team. To optimise outcomes and the child's adjustment, these parents should be offered psychological support when necessary.
  
  
  BACKGROUND
  ISRCTN29932826.
authors.affiliation: a Centre for Rare Disorders , Oslo University Hospital , Oslo , Norway.
authors.forename: Kristin Billaud
authors.initials: KB
authors.lastname: Feragen
authors.affiliation: b Centre for Appearance Research , University of the West of England , Bristol , UK.
authors.forename: Nichola
authors.initials: N
authors.lastname: Rumsey
authors.affiliation: c Department of Plastic Surgery, Cleft Palate and Craniofacial Centre , Helsinki University Central Hospital , Helsinki , Finland.
authors.forename: Arja
authors.initials: A
authors.lastname: Heliövaara
authors.affiliation: d Copenhagen Cleft Palate Centre , University Hospital of Copenhagen , Denmark.
authors.forename: Betty Marie
authors.initials: BM
authors.lastname: Boysen
authors.affiliation: e Department of Speech and Language Disorders , Statped Sørøst , Oslo , Norway.
authors.forename: Emma Christine
authors.initials: EC
authors.lastname: Johannessen
authors.affiliation: f Division of Speech and Language Pathology , Sahlgrenska University Hospital , Gothenburg , Sweden.
authors.forename: Christina
authors.initials: C
authors.lastname: Havstam
authors.affiliation: g Department of Dentofacial Orthopedics, Maxillofacial Unit , University Hospital Linköping , Linkjöping , Sweden.
authors.forename: Agneta
authors.initials: A
authors.lastname: Marcusson
authors.affiliation: h Division of Speech and Language Pathology, Stockholm Craniofacial Team , Karolinska University Hospital , Stockholm , Sweden.
authors.forename: Jill
authors.initials: J
authors.lastname: Nyberg
authors.affiliation: i Department of Speech and Language Disorders , Statped Vest , Bergen , Norway.
authors.forename: Nina-Helen
authors.initials: NH
authors.lastname: Pedersen
authors.affiliation: j Cleft Palate Centre , Aarhus , Denmark.
authors.forename: Joan
authors.initials: J
authors.lastname: Bogh-Nielsen
authors.affiliation: k Dental School , University of Manchester , Manchester , UK.
authors.forename: Philip
authors.initials: P
authors.lastname: Eyres
authors.affiliation: l Private Practice , Manchester , UK.
authors.forename: Eileen
authors.initials: E
authors.lastname: Bradbury
authors.affiliation: k Dental School , University of Manchester , Manchester , UK.|m Department of Plastic and Reconstructive Surgery , Oslo University Hospital Rikshospitalet , Oslo , Norway.
authors.forename: Gunvor
authors.initials: G
authors.lastname: Semb
mesh_terms: D000223:Adaptation, Psychological; D002648:Child; D002675:Child, Preschool; D002971:Cleft Lip / Q000175:diagnosis / Q000523:psychology* / Q000601:surgery*; D002972:Cleft Palate / Q000175:diagnosis / Q000523:psychology* / Q000601:surgery*; D004644:Emotions; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D038622:Internationality; D007398:Interpersonal Relations; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D011788:Quality of Life; D016032:Randomized Controlled Trials as Topic; D019651:Plastic Surgery Procedures / Q000379:methods*; D013997:Time Factors; D016896:Treatment Outcome
keywords: Parental adjustment; cleft; social reactions; social support; teasing