title: Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child.
abstract: OBJECTIVE
  Few studies have explored children's emotional and behavioural reactions to cleft surgery and treatment-related stress. The objective was to investigate parents' evaluations of appearance and treatment outcomes in their 5-year-old child with unilateral cleft lip and palate (UCLP), and their perceptions of how their child was coping with treatment, comparing this information with recorded postsurgical complications.
  
  
  METHODS
  Three parallel group randomised clinical trials were undertaken as an international multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK.
  
  
  METHODS
  Three different surgical procedures for primary palatal repair were tested against a common procedure in the total cohort of 448 children born with a non-syndromic UCLP. A total of 356 parents completed the Scandcleft Parent Questionnaire, and 346 parents completed the Cleft Evaluation Profile.
  
  
  RESULTS
  The results indicated that the majority of parents were satisfied with cleft-related features of their child's appearance. Further, most children coped well with treatment according to their parents. Nevertheless, 17.5% of the children showed minor or short-term reactions after treatment experiences, and 2% had major or lasting difficulties. There were no significant relationships between parent perceptions of treatment-related problems and the occurrence of post-surgical medical complications.
  
  
  CONCLUSIONS
  Most parents reported satisfaction with their child's appearance. However, treatment-related problems were described in some children, urging cleft centres to be aware of potential negative emotional and behavioural reactions to treatment in some young children, with a view to preventing the development of more severe treatment-related anxiety.
  
  
  BACKGROUND
  ISRCTN29932826.
authors.affiliation: a Centre for Rare Disorders , Oslo University Hospital , Oslo , Norway.|b Department of Speech and Language Disorders , Statped Sørøst , Oslo , Norway.
authors.forename: Kristin Billaud
authors.initials: KB
authors.lastname: Feragen
authors.affiliation: c Dental School , University of Manchester , Manchester , UK.|d Department of Plastic and Reconstructive Surgery , Oslo University Hospital Rikshospitalet , Oslo , Norway.
authors.forename: Gunvor
authors.initials: G
authors.lastname: Semb
authors.affiliation: e Cleft Palate and Craniofacial Centre , Helsinki University Central Hospital , Helsinki , Finland.
authors.forename: Arja
authors.initials: A
authors.lastname: Heliövaara
authors.affiliation: f Division of Speech and Language Pathology , Karolinska Institutet, Karolinska University Hospital , Sweden.
authors.forename: Anette
authors.initials: A
authors.lastname: Lohmander
authors.affiliation: b Department of Speech and Language Disorders , Statped Sørøst , Oslo , Norway.
authors.forename: Emma Christine
authors.initials: EC
authors.lastname: Johannessen
authors.affiliation: g Copenhagen Cleft Palate Centre , University Hospital of Copenhagen , Denmark.
authors.forename: Betty Marie
authors.initials: BM
authors.lastname: Boysen
authors.affiliation: h Division of Speech and Language Pathology , Sahlgrenska University Hospital , Gothenburg , Sweden.
authors.forename: Christina
authors.initials: C
authors.lastname: Havstam
authors.affiliation: i Division of Speech and Language Pathology , Linköping University , Linköping , Sweden.
authors.forename: Inger
authors.initials: I
authors.lastname: Lundeborg
authors.affiliation: j Stockholm Craniofacial Team , Karolinska University Hospital , Stockholm , Sweden.
authors.forename: Jill
authors.initials: J
authors.lastname: Nyberg
authors.affiliation: k Department of Speech and Language Disorders , Statped Vest , Bergen , Norway.
authors.forename: Nina-Helen
authors.initials: NH
authors.lastname: Pedersen
authors.affiliation: l Cleft Palate Centre , Aarhus , Denmark.
authors.forename: Joan
authors.initials: J
authors.lastname: Bogh-Nielsen
authors.affiliation: c Dental School , University of Manchester , Manchester , UK.
authors.forename: Philip
authors.initials: P
authors.lastname: Eyres
authors.affiliation: m Private Practice , Manchester , UK.
authors.forename: Eileen
authors.initials: E
authors.lastname: Bradbury
authors.affiliation: n Centre for Appearance Research , University of the West of England , Bristol , UK.
authors.forename: Nichola
authors.initials: N
authors.lastname: Rumsey
mesh_terms: D000223:Adaptation, Psychological; D000704:Analysis of Variance; D002675:Child, Preschool; D002971:Cleft Lip / Q000175:diagnosis / Q000601:surgery*; D002972:Cleft Palate / Q000175:diagnosis / Q000601:surgery*; D004954:Esthetics; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D038622:Internationality; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010465:Perception; D010549:Personal Satisfaction; D016032:Randomized Controlled Trials as Topic; D019651:Plastic Surgery Procedures / Q000009:adverse effects / Q000379:methods*; D016896:Treatment Outcome
keywords: Parent satisfaction; appearance; cleft; coping; treatment anxiety; treatment-related problems