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

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.

• 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
• Contract Date: Feb 23, 2017