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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

Heli�vaara, Arja; Johannessen, Emma Christine; Boysen, Betty Marie; Pedersen, Nina Helen; Heliovaara, Arja; Feragen, Kristin Billaud; Semb, Gunvor; Lohmander, Anette; Havstam, Christina; Lundeborg, Inger; Nyberg, Jill; Bradbury, Eileen; Bogh-Nielsen, Joan; Eyres, Philip; Rumsey, Nichola

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 Thumbnail


Authors

Arja Heli�vaara

Emma Christine Johannessen

Betty Marie Boysen

Nina Helen Pedersen

Arja Heliovaara

Kristin Billaud Feragen

Gunvor Semb

Anette Lohmander

Christina Havstam

Inger Lundeborg

Jill Nyberg

Eileen Bradbury

Joan Bogh-Nielsen

Philip Eyres



Abstract

© 2017 Acta Chirurgica Scandinavica Society. Background and aim: 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. Design: 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. Trial registration: ISRCTN29932826.

Citation

Pedersen, N. H., Boysen, B. M., Johannessen, E. C., Heliövaara, A., Feragen, K. B., Semb, G., …Rumsey, N. (2017). 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. Journal of Plastic Surgery and Hand Surgery, 51(1), 81-87. https://doi.org/10.1080/2000656X.2016.1254642

Journal Article Type Article
Acceptance Date Oct 26, 2016
Online Publication Date Feb 20, 2017
Publication Date Feb 20, 2017
Deposit Date Feb 21, 2017
Publicly Available Date Feb 20, 2018
Journal Journal of Plastic Surgery and Hand Surgery
Print ISSN 2000-656X
Publisher Taylor & Francis
Peer Reviewed Peer Reviewed
Volume 51
Issue 1
Pages 81-87
DOI https://doi.org/10.1080/2000656X.2016.1254642
Keywords parent satisfaction, cleft, appearance, treatment anxiety, visible difference
Public URL https://uwe-repository.worktribe.com/output/899130
Publisher URL http://dx.doi.org/10.1080/2000656X.2016.1254642
Additional Information Additional Information : This is an Accepted Manuscript of an article published by Taylor & Francis in Journal of Plastic Surgery and Hand Surgery on 20th February 2017, available online: http://dx.doi.org/10.1080/2000656X.2016.1254642http://www.tandfonline.com/10.1080/2000656X.2016.1254642.