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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

Feragen, Kristin, Billaud (författare)
Centre for Rare Disorders, Oslo University Hospital, Oslo, Norway
Rumsey, Nichola (författare)
Centre for Appearance Research, University of the West of England, Bristol, UK
Heliövaara, Arja (författare)
Department of Plastic Surgery, Cleft Palate and Craniofacial Centre, Helsinki University Central Hospital, Helsinki, Finland
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Boysen, Betty, Marie (författare)
Copenhagen Cleft Palate Centre, University Hospital of Copenhagen, Denmark
Johannessen, Emma Christine (författare)
Department of Speech and Language Disorders, Statped Sørøst, Oslo, Norway
Havstam, Christina (författare)
Division of Speech and Language Pathology, Sahlgrenska University Hospital, Gothenburg, Sweden
Marcusson, Agneta, 1956- (författare)
Linköpings universitet,Avdelningen för Kirurgi, Ortopedi och Onkologi,Medicinska fakulteten,Region Östergötland, Käkkliniken US
Nyberg, Jill (författare)
Karolinska Institutet,Division of Speech and Language Pathology, Stockholm Craniofacial Team, Karolinska University Hospital, Stockholm, Sweden
Pedersen, Nina-Helen (författare)
Department of Speech and Language Disorders, Statped Vest, Bergen, Norway
Bogh-Nielsen, Joan (författare)
Cleft Palate Centre, Aarhus, Denmark
Eyres, Philip (författare)
Dental School, University of Manchester, Manchester, UK
Bradbury, Eileen (författare)
Private Practice, Manchester, UK
Semb, Gunvor (författare)
Dental School, University of Manchester, Manchester, UK; Department of Plastic and Reconstructive Surgery, Oslo University Hospital Rikshospitalet, Oslo, Norway
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 (creator_code:org_t)
Taylor & Francis, 2017
2017
Engelska.
Ingår i: Journal of Plastic Surgery and Hand Surgery. - : Taylor & Francis. - 2000-656X .- 2000-6764. ; 51:1, s. 73-80
  • Tidskriftsartikel (refereegranskat)
Abstract Ämnesord
Stäng  
  • 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]

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Kirurgi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Surgery (hsv//eng)

Nyckelord

cleft
Parental adjustment
social reactions
social support
teasing

Publikations- och innehållstyp

ref (ämneskategori)
art (ämneskategori)

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