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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.
J Plast Surg Hand Surg. 2017 Feb; 51(1):73-80.JP

Abstract

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.

Authors+Show Affiliations

a Centre for Rare Disorders , Oslo University Hospital , Oslo , Norway.b Centre for Appearance Research , University of the West of England , Bristol , UK.c Department of Plastic Surgery, Cleft Palate and Craniofacial Centre , Helsinki University Central Hospital , Helsinki , Finland.d Copenhagen Cleft Palate Centre , University Hospital of Copenhagen , Denmark.e Department of Speech and Language Disorders , Statped Sørøst , Oslo , Norway.f Division of Speech and Language Pathology , Sahlgrenska University Hospital , Gothenburg , Sweden.g Department of Dentofacial Orthopedics, Maxillofacial Unit , University Hospital Linköping , Linkjöping , Sweden.h Division of Speech and Language Pathology, Stockholm Craniofacial Team , Karolinska University Hospital , Stockholm , Sweden.i Department of Speech and Language Disorders , Statped Vest , Bergen , Norway.j Cleft Palate Centre , Aarhus , Denmark.k Dental School , University of Manchester , Manchester , UK.l Private Practice , Manchester , UK.k Dental School , University of Manchester , Manchester , UK. m Department of Plastic and Reconstructive Surgery , Oslo University Hospital Rikshospitalet , Oslo , Norway.

Pub Type(s)

Journal Article
Multicenter Study
Review

Language

eng

PubMed ID

28218553

Citation

Feragen, Kristin Billaud, et al. "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, vol. 51, no. 1, 2017, pp. 73-80.
Feragen KB, Rumsey N, Heliövaara A, et al. 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. J Plast Surg Hand Surg. 2017;51(1):73-80.
Feragen, K. B., Rumsey, N., Heliövaara, A., Boysen, B. M., Johannessen, E. C., Havstam, C., Marcusson, A., Nyberg, J., Pedersen, N. H., Bogh-Nielsen, J., Eyres, P., Bradbury, E., & 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
Feragen KB, et al. 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. J Plast Surg Hand Surg. 2017;51(1):73-80. PubMed PMID: 28218553.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - 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. AU - Feragen,Kristin Billaud, AU - Rumsey,Nichola, AU - Heliövaara,Arja, AU - Boysen,Betty Marie, AU - Johannessen,Emma Christine, AU - Havstam,Christina, AU - Marcusson,Agneta, AU - Nyberg,Jill, AU - Pedersen,Nina-Helen, AU - Bogh-Nielsen,Joan, AU - Eyres,Philip, AU - Bradbury,Eileen, AU - Semb,Gunvor, PY - 2017/2/21/entrez PY - 2017/2/22/pubmed PY - 2017/12/16/medline KW - Parental adjustment KW - cleft KW - social reactions KW - social support KW - teasing SP - 73 EP - 80 JF - Journal of plastic surgery and hand surgery JO - J Plast Surg Hand Surg VL - 51 IS - 1 N2 - 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. SN - 2000-6764 UR - https://www.unboundmedicine.com/medline/citation/28218553/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_ L2 - http://www.tandfonline.com/doi/full/10.1080/2000656X.2016.1254643 DB - PRIME DP - Unbound Medicine ER -