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女性全喉切除术后的生活体验:一项定性研究。

Women's perspective on life after total laryngectomy: a qualitative study.

机构信息

Department of Head and Neck Oncology and Surgery, Netherlands Cancer Institute-Antoni van Leeuwenhoek, Amsterdam, the Netherlands.

Amsterdam Center for Language and Communication, University of Amsterdam, Amsterdam, the Netherlands.

出版信息

Int J Lang Commun Disord. 2020 Mar;55(2):188-199. doi: 10.1111/1460-6984.12511. Epub 2019 Nov 1.

Abstract

BACKGROUND

Physical and psychosocial challenges are common after total laryngectomy. The surgery leads to lifelong changes in communication, airway, swallowing and appearance. As we move towards health models driven by patient-centred care, understanding the differential impacts of surgical procedures on subgroups of patients can help improve our care models, patient education and support systems. This paper discusses the experiences of women following total laryngectomy.

AIMS

To gain an insight into the impact of total laryngectomy on women's daily life while identifying their specific rehabilitation needs.

METHODS & PROCEDURES: This paper is based on in-depth, semi-structured interviews with eight women who had undergone total laryngectomy. These interviews were conducted with women at least 1 year after they had undergone total laryngectomy, and the participants did not have recurrent disease. Using an interview guide, participants were encouraged to discuss their everyday experiences, while also focusing on issues typical to women. The transcribed interview data were analysed by thematic analysis, taking interpretative phenomenological analysis as a lead.

OUTCOMES & RESULTS: The interviews revealed three main themes: disease and treatment as a turning point, re-establishing meaningful everyday activities, and persistent vulnerability. Participants reported experiencing challenges in their rehabilitation process due to physical disabilities, dependency on others and experienced stigma. Women-specific challenges arose in dealing with the altered appearance and voice, performing care activities, and the spousal relationship (including intimacy).

CONCLUSIONS & IMPLICATIONS: Women who undergo total laryngectomy are likely to experience issues in returning to work, the performance of informal care-work, the spousal relationship, intimacy and social interaction due to stigmatization. Medical pretreatment counselling and multidisciplinary rehabilitation programmes should help patients form realistic expectations and prepare them for the changes they will face. A gender- and age-matched laryngectomized patient visitor can contribute to this process. Rehabilitation programmes should incorporate the partner and offer psychosocial support for women following total laryngectomy to return to their former roles in family life, social life and work-related activities.

摘要

背景

全喉切除术后会带来身体和心理社会方面的挑战。手术会导致患者在沟通、气道、吞咽和外貌方面发生终身改变。随着我们朝着以患者为中心的护理模式发展,了解手术程序对患者亚组的不同影响,可以帮助我们改进护理模式、患者教育和支持系统。本文讨论了全喉切除术后女性的经历。

目的

深入了解全喉切除对女性日常生活的影响,同时确定她们的具体康复需求。

方法与程序

本文基于对 8 名全喉切除术后女性的深入半结构化访谈。这些访谈是在全喉切除术后至少 1 年对女性进行的,且参与者没有复发性疾病。使用访谈指南,鼓励参与者讨论她们的日常经历,同时关注女性特有的问题。转录的访谈数据通过主题分析进行分析,以解释现象学分析为先导。

结果

访谈揭示了三个主要主题:疾病和治疗作为转折点、重新建立有意义的日常活动、以及持续的脆弱性。参与者报告在康复过程中由于身体残疾、依赖他人和经历污名化而面临挑战。在处理改变的外貌和声音、进行护理活动以及夫妻关系(包括亲密关系)方面,出现了女性特有的挑战。

结论与意义

全喉切除术后的女性可能会因污名化而在重返工作岗位、进行非正式护理工作、夫妻关系、亲密关系和社会交往方面遇到问题。医疗预处理咨询和多学科康复计划应帮助患者形成现实的期望,并为他们将面临的变化做好准备。性别和年龄匹配的喉切除患者探访者可以为这一过程做出贡献。康复计划应包括伴侣,并为全喉切除术后的女性提供心理社会支持,帮助她们恢复在家庭生活、社会生活和工作相关活动中的原有角色。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fea5/7079180/28c2adaf2e59/JLCD-55-188-g001.jpg

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