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

• Published in: Journal of plastic surgery and hand surgery Vol. 51; no. 1; pp. 73 - 80
• Main Authors: Feragen, Kristin Billaud, Rumsey, Nichola, Heliövaara, Arja, Boysen, Betty Marie, Johannessen, Emma Christine, Havstam, Christina, Marcusson, Agneta, Nyberg, Jill, Pedersen, Nina-Helen, Bogh-Nielsen, Joan, Eyres, Philip, Bradbury, Eileen, Semb, Gunvor
• Format: Journal Article
• Language: English
• Published: Sweden Taylor & Francis 02.01.2017
• Subjects: Adaptation, Psychological; Child; Child, Preschool; cleft; Cleft Lip - diagnosis; Cleft Lip - psychology; Cleft Lip - surgery; Cleft Palate - diagnosis; Cleft Palate - psychology; Cleft Palate - surgery; Emotions; Female; Follow-Up Studies; Humans; Infant; Internationality; Interpersonal Relations; Male; Medicin och hälsovetenskap; Parent-Child Relations; Parental adjustment; Parents - psychology; Quality of Life; Randomized Controlled Trials as Topic; Reconstructive Surgical Procedures - methods; social reactions; social support; teasing; Time Factors; Treatment Outcome; social support; social reactions; Parental adjustment; teasing; cleft
• ISSN: 2000-656X; 2000-6764; 2000-6764
• DOI: 10.1080/2000656X.2016.1254643

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.