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  • Feragen, Kristin, BillaudCentre for Rare Disorders, Oslo University Hospital, Oslo, Norway (author)

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

  • Article/chapterEnglish2017

Publisher, publication year, extent ...

  • Taylor & Francis,2017
  • printrdacarrier

Numbers

  • LIBRIS-ID:oai:DiVA.org:liu-135501
  • https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-135501URI
  • https://doi.org/10.1080/2000656X.2016.1254643DOI
  • http://kipublications.ki.se/Default.aspx?queryparsed=id:135262473URI

Supplementary language notes

  • Language:English
  • Summary in:English

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  • Subject category:ref swepub-contenttype
  • Subject category:art swepub-publicationtype

Notes

  • Background and aim: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. Design: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. Conclusion: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. Trial registration:ISRCTN29932826. [ABSTRACT FROM AUTHOR]

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Added entries (persons, corporate bodies, meetings, titles ...)

  • Rumsey, NicholaCentre for Appearance Research, University of the West of England, Bristol, UK (author)
  • Heliövaara, ArjaDepartment of Plastic Surgery, Cleft Palate and Craniofacial Centre, Helsinki University Central Hospital, Helsinki, Finland (author)
  • Boysen, Betty, MarieCopenhagen Cleft Palate Centre, University Hospital of Copenhagen, Denmark (author)
  • Johannessen, Emma ChristineDepartment of Speech and Language Disorders, Statped Sørøst, Oslo, Norway (author)
  • Havstam, ChristinaDivision of Speech and Language Pathology, Sahlgrenska University Hospital, Gothenburg, Sweden (author)
  • Marcusson, Agneta,1956-Linköpings universitet,Avdelningen för Kirurgi, Ortopedi och Onkologi,Medicinska fakulteten,Region Östergötland, Käkkliniken US(Swepub:liu)agnma12 (author)
  • Nyberg, JillKarolinska Institutet,Division of Speech and Language Pathology, Stockholm Craniofacial Team, Karolinska University Hospital, Stockholm, Sweden (author)
  • Pedersen, Nina-HelenDepartment of Speech and Language Disorders, Statped Vest, Bergen, Norway (author)
  • Bogh-Nielsen, JoanCleft Palate Centre, Aarhus, Denmark (author)
  • Eyres, PhilipDental School, University of Manchester, Manchester, UK (author)
  • Bradbury, EileenPrivate Practice, Manchester, UK (author)
  • Semb, GunvorDental School, University of Manchester, Manchester, UK; Department of Plastic and Reconstructive Surgery, Oslo University Hospital Rikshospitalet, Oslo, Norway (author)
  • Centre for Rare Disorders, Oslo University Hospital, Oslo, NorwayCentre for Appearance Research, University of the West of England, Bristol, UK (creator_code:org_t)

Related titles

  • In:Journal of Plastic Surgery and Hand Surgery: Taylor & Francis51:1, s. 73-802000-656X2000-6764

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