Department of Plastic Surgery, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Department of Reconstructive Plastic Surgery, Region Västra Götaland, Sahlgrenska University Hospital, Gothenburg, Sweden.
Cleft Palate Craniofac J. 2024 Jan;61(1):52-60. doi: 10.1177/10556656221121037. Epub 2022 Aug 17.
The aim of the present study was to describe the experiences of young adults living with cleft lip and palate (CLP) and to explore potential gender differences. A descriptive qualitative study was designed involving semi-structured interviews. The interviews were analyzed using qualitative content analysis, as described by Graneheim and Lundman. A total of 9 women and 8 men, aged 22 to 26 years with UCLP. The main theme identified was: the duality of living with a cleft-being normal yet different, and 2 subcategories: "My cleft and me" and "My cleft and the World." The participants described themselves as normal yet different, both in relation to themselves and in relation to others. They also stated that gender norms regarding appearance affected their lives and how they saw the cleft. This study adds to the growing body of qualitative research on CLP. It highlights the dualistic experiences of feeling normal and different at the same time. The interviews indicated that this dualism was based on context and gender, showing the psychological complexity of an individual. The clinical implications of this study emphasizes the need of a person-centered care approach in the cleft care setting where the clinicians are aware of the potential dualistic experience that also may differ over time that individuals with cleft can experience. This can also help clinicians better understand and help patients reduce distress and strengthen positive coping mechanisms.
本研究旨在描述唇腭裂（CLP）年轻患者的生活体验，并探讨潜在的性别差异。设计了一项描述性定性研究，包括半结构化访谈。采用 Graneheim 和 Lundman 描述的定性内容分析法对访谈进行分析。共有 9 名女性和 8 名男性，年龄在 22 至 26 岁，患有单侧唇裂腭裂。确定的主要主题是：带着唇腭裂生活的双重性——正常但又与众不同，有 2 个子类别：“我的唇腭裂和我”和“我的唇腭裂和世界”。参与者形容自己正常但又与众不同，既与自己有关，也与他人有关。他们还表示，关于外表的性别规范影响了他们的生活以及他们对唇腭裂的看法。本研究是对 CLP 不断增长的定性研究的补充。它强调了同时感到正常和不同的双重体验。访谈表明，这种双重性基于背景和性别，显示了个体心理的复杂性。本研究的临床意义强调了在唇腭裂护理环境中需要采用以患者为中心的护理方法，临床医生应该意识到患者可能会经历潜在的双重体验，而且这种体验可能会随时间而变化。这也可以帮助临床医生更好地理解和帮助患者减轻痛苦，增强积极的应对机制。
