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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

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

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 Thumbnail


Authors

Arja Heli�vaara

Betty Marie Boysen

Emma Christine Johannessen

Nina Helen Pedersen

Arja Heliovaara

Kristin Billaud Feragen

Christina Havstam

Agneta Marcusson

Jill Nyberg

Eileen Bradbury

Joan Bogh-Nielsen

Philip Eyres

Gunvor Semb



Abstract

© 2017 Acta Chirurgica Scandinavica Society. 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.

Citation

Pedersen, N. H., Johannessen, E. C., Boysen, B. M., Heliövaara, A., Feragen, K. B., Rumsey, N., …Semb, G. (2017). 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. Journal of Plastic Surgery and Hand Surgery, 51(1), 73-80. https://doi.org/10.1080/2000656X.2016.1254643

Journal Article Type Article
Acceptance Date Sep 5, 2016
Online Publication Date Feb 20, 2017
Publication Date Feb 20, 2017
Deposit Date Feb 23, 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 73-80
DOI https://doi.org/10.1080/2000656X.2016.1254643
Keywords parental adjustment, cleft, social reactions, social support, teasing, visible difference
Public URL https://uwe-repository.worktribe.com/output/899099
Publisher URL http://dx.doi.org/10.1080/2000656X.2016.1254643
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.2016.1254643