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本文引用的文献

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Experiential avoidance and cognitive fusion mediate the relationship between body evaluation and unhelpful body image coping strategies in individuals with visible differences.体验回避和认知融合在有可见差异的个体中,中介了身体评价和无益的身体形象应对策略之间的关系。
Body Image. 2020 Mar;32:121-127. doi: 10.1016/j.bodyim.2019.12.002. Epub 2019 Dec 20.
2
International Consensus Recommendations on Microtia, Aural Atresia and Functional Ear Reconstruction.关于小耳畸形、外耳道闭锁及功能性耳再造的国际共识建议
J Int Adv Otol. 2019 Aug;15(2):204-208. doi: 10.5152/iao.2019.7383.
3
Breaking the News: Parents' Experiences of Receiving an Antenatal Diagnosis of Cleft Lip.告知坏消息:父母接受唇裂产前诊断的经历
Cleft Palate Craniofac J. 2019 Oct;56(9):1149-1156. doi: 10.1177/1055665619830884. Epub 2019 Apr 24.
4
Understandings and experiences of visible difference and romantic relationships: A qualitative exploration.可见差异和浪漫关系的理解和体验:定性探索。
Body Image. 2018 Dec;27:32-42. doi: 10.1016/j.bodyim.2018.08.002. Epub 2018 Aug 18.
5
Exploring the Medical and Psychosocial Concerns of Adolescents and Young Adults With Craniofacial Microsomia: A Qualitative Study.探索患有颅面短小畸形的青少年和青年的医学及心理社会问题:一项定性研究。
Cleft Palate Craniofac J. 2018 Nov;55(10):1430-1439. doi: 10.1177/1055665618768542. Epub 2018 Apr 10.
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Early Familial Experiences With Microtia: Psychosocial Implications for Pediatric Providers.早期小耳畸形的家族经历:对儿科医疗服务提供者的社会心理影响
Clin Pediatr (Phila). 2018 Jun;57(7):775-782. doi: 10.1177/0009922817734358. Epub 2017 Sep 29.
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Developing young person's Face IT: Online psychosocial support for adolescents struggling with conditions or injuries affecting their appearance.为青少年打造“直面现实”:为那些因身体状况或损伤而容貌受损的青少年提供在线心理社会支持。
Health Psychol Open. 2015 Dec 9;2(2):2055102915619092. doi: 10.1177/2055102915619092. eCollection 2015 Jul.
8
Microtia Reconstruction.小耳畸形重建
Facial Plast Surg Clin North Am. 2016 Nov;24(4):577-591. doi: 10.1016/j.fsc.2016.06.011.
9
Prevalence of Renal and Cervical Vertebral Anomalies in Patients With Isolated Microtia and/or Aural Atresia.孤立性小耳畸形和/或耳道闭锁患者的肾脏及颈椎异常患病率
Cleft Palate Craniofac J. 2017 Nov;54(6):664-667. doi: 10.1597/16-115. Epub 2016 Sep 15.
10
Shared Surgical Decision Making and Youth Resilience Correlates of Satisfaction With Clinical Outcomes.共同手术决策与青年恢复力对临床结果满意度的相关性。
J Craniofac Surg. 2015 Jul;26(5):1574-80. doi: 10.1097/SCS.0000000000001892.

探索小耳畸形成年人的体验:一项定性研究。

Exploring the Experiences of Adults With Microtia: A Qualitative Study.

机构信息

Centre for Appearance Research, University of the West of England, Bristol, United Kingdom.

出版信息

Cleft Palate Craniofac J. 2020 Oct;57(10):1230-1237. doi: 10.1177/1055665620931611. Epub 2020 Jul 9.

DOI:10.1177/1055665620931611
PMID:32643387
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7502977/
Abstract

OBJECTIVE

Microtia is a medically complex condition, with the option of surgery to address hearing and reconstruct the ear. The current study explored adults' experiences of microtia, with a particular focus on the psychosocial impact and experiences of ear reconstruction. The ultimate aim was to identify areas for support and future research that could improve patient care.

DESIGN

Fifteen adults (12 females) aged between 20 and 62 years took part in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis.

RESULTS

Three main themes were identified in the data: microtia as an invisible difference, surgery as a welcome opportunity, and living well with microtia. Participants had incorporated microtia into their self-concept and did not report a lasting negative impact on their lives. However, some psychosocial challenges were reported, including anxiety about showing their ears (even after reconstruction), disclosing their diagnosis to romantic partners, surgical decision-making, and feeling unsupported in the work environment.

CONCLUSION

Individuals with microtia may benefit from psychosocial interventions to increase confidence, access to support for treatment decision-making, and guidance around disclosing microtia to employers.

摘要

目的

小耳畸形是一种医学上复杂的病症,可以选择手术来解决听力问题并重建耳朵。本研究探讨了成年人对小耳畸形的体验,特别关注其对社交心理的影响和耳部重建的体验。最终目标是确定支持和未来研究的领域,以改善患者的护理。

设计

15 名年龄在 20 至 62 岁之间的成年人(12 名女性)参加了半结构式访谈。访谈进行了录音,并逐字转录,然后使用归纳主题分析进行分析。

结果

在数据中确定了三个主要主题:作为无形差异的小耳畸形、作为受欢迎机会的手术,以及小耳畸形的良好生活。参与者已将小耳畸形融入自我概念中,生活并未受到持久的负面影响。但是,也报告了一些社交心理方面的挑战,包括对露出耳朵的焦虑(即使在重建后)、向恋爱伴侣透露诊断、手术决策,以及在工作环境中感到缺乏支持。

结论

小耳畸形患者可能受益于社交心理干预,以提高自信心、获得治疗决策支持,并指导他们向雇主披露小耳畸形。