全喉切除术后的社会存在感与关系支持协商：一项质性研究

文献信息

中文摘要

背景： 全喉切除术是一种相对罕见的手术，但它显著影响个体的整体健康。对该手术的认知仍然较低，对这些个体的支持也有限，这塑造了个体在日常社会互动中如何看待自己的可见性和支持。本研究旨在探讨全喉切除术后的个体如何在社会互动中感知自己的可见性，以及他们从家庭和更广泛社区获得的支持。方法：这项叙事探究研究通过访谈和书面故事从六名参与者中收集数据。然后通过叙事主题分析对数据进行分析，恢复每个叙事，并使用Braun和Clarke（2019）的反身主题分析识别主题。结果：从数据中发展出两个主题：“可见但不可见”和“谁真正关心？”主题“可见但不可见”强调这些个体感到被忽视、被标签化和被污名化，生活在尴尬中，并遭遇公众对全喉切除术的不熟悉。主题“谁真正关心？”强调了围绕家庭的挑战以及全喉切除术同伴支持方面的差距。结论：全喉切除术仍然是一种罕见且不熟悉的手术，个体在术后继续面临挑战。喉切除术后经历的重大社会和心理影响表明，需要提高对这一边缘化群体的认识和支持。

英文摘要

Total laryngectomy is a relatively uncommon procedure, yet it significantly affects individuals' overall well-being. Awareness of the procedure remains low, and support for these individuals is limited, shaping how individuals perceive their visibility and support in everyday social interactions. This study aimed to explore how individuals with a total laryngectomy perceive their visibility in social interactions, and the support they receive from family and the wider community. This narrative inquiry study collected data from six participants through interviews and written stories. The data was then analysed through narrative thematic analysis, restoring each narrative and identifying themes using Braun and Clarke (2019) reflexive thematic analysis. Two themes were developed from the data; 'Visible but invisible' and 'Who really cares?' The theme 'Visible but invisible' highlighted that these individuals feel ignored, labelled and stigmatised, live with embarrassment and encounter public unfamiliarity of total laryngectomy. The theme 'Who really cares?' highlighted challenges surrounding family and gaps in total laryngectomy peer support. Total laryngectomy remains a rare and unfamiliar procedure, and individuals continue to face challenges following the procedure. The significant social and psychological impact of post-laryngectomy experiences suggests a need for increased awareness and support for this marginalised population.