Exploring the Needs of Young People Born With Cleft Lip and/or Palate Approaching End of Routine Care, in the UK.

IF 1.3 4区医学 Q2 Dentistry Cleft Palate-Craniofacial Journal Pub Date : 2025-01-17 DOI:10.1177/10556656241312494

Julie Davies, Elaine Davidson, Sam Harding, Yvonne Wren, Lucy Southby

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Abstract

Objective: The aim of this study was to understand the needs of young people, aged 16 to 20 years, born with cleft lip and/or palate (CL/P) approaching end of routine care, in the United Kingdom (UK).

Design: Nominal group technique was used during 2 online focus groups to identify priorities for cleft care at transition to adult care. Focus group discussions were recorded, transcribed, and analyzed using reflexive thematic analysis.

Participants: Ten young people born with CL/P, 8 aged 18 to 20 years and 2 aged 16 to 17 years were recruited via the UK-based cleft charity, the Cleft Lip and Palate Association (CLAPA).

Results: Three themes were identified from the analysis: Theme 1-Psychological well-being is not a constant. Theme 2-Asking and listening-the cleft clinic appointment. Theme 3-Approaching end of routine care and re-accessing cleft services.

Conclusions: Findings suggest that young people have ongoing needs in older adolescence. Psychological well-being, taking control of their own treatment and re-accessing the cleft team were highlighted as particular issues. Whilst further research with a larger and more representative sample is needed, these results support the need for continued access to and provision from the cleft team at this age.

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在英国，探索出生时唇腭裂和/或腭裂的年轻人的日常护理即将结束的需求。

目的：本研究的目的是了解英国（UK）年龄在16至20岁，出生时唇裂和/或腭裂（CL/P）接近常规护理结束的年轻人的需求。设计：在2个在线焦点小组中使用名义小组技术来确定过渡到成人护理的唇腭裂护理的优先事项。对焦点小组讨论进行记录、转录，并使用反身性主题分析进行分析。参与者：10名患有先天性唇腭裂的年轻人，8名年龄在18岁到20岁之间，2名年龄在16岁到17岁之间，他们是通过英国的唇腭裂慈善机构CLAPA招募的。结果：从分析中确定了三个主题：主题1-心理健康不是一个常数。主题2：询问与倾听——唇腭裂门诊预约。主题3：临近常规护理的结束和唇腭裂的重新获得服务。结论：研究结果表明，青少年在青春期有持续的需求。心理健康，控制自己的治疗和重新进入唇腭裂小组被强调为特别的问题。虽然需要更大、更有代表性的样本进行进一步的研究，但这些结果支持了在这个年龄段继续获得和提供裂隙团队的必要性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Cleft Palate-Craniofacial Journal DENTISTRY, ORAL SURGERY & MEDICINE-SURGERY

CiteScore

2.20

自引率

36.40%

发文量

审稿时长

4-8 weeks

期刊介绍： The Cleft Palate-Craniofacial Journal (CPCJ) is the premiere peer-reviewed, interdisciplinary, international journal dedicated to current research on etiology, prevention, diagnosis, and treatment in all areas pertaining to craniofacial anomalies. CPCJ reports on basic science and clinical research aimed at better elucidating the pathogenesis, pathology, and optimal methods of treatment of cleft and craniofacial anomalies. The journal strives to foster communication and cooperation among professionals from all specialties.