角落的桌子：一项关于姑息治疗中食管癌患者生活状况和日常生活观点的定性研究。
Table in the corner: a qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care.
机构信息
Department of Palliative Care, Copenhagen University Hospital, Copenhagen, Denmark.
Department of Cardiothoracic Surgery, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, 2100, Copenhagen, Denmark.
出版信息
BMC Palliat Care. 2019 Jul 22;18(1):60. doi: 10.1186/s12904-019-0445-2.
BACKGROUND
Incurable oesophageal cancer patients are often affected by existential distress and deterioration of quality of life. Knowledge about the life situation of this patient group is important to provide relevant palliative care and support. The purpose of this study is to illuminate the ways in which incurable oesophageal cancer disrupts the patients' lives and how the patients experience and adapt to life with the disease.
METHODS
Seventeen patients receiving palliative care for oesophageal cancer were interviewed 1-23 months after diagnosis. The epistemological approach was inspired by phenomenology and hermeneutics, and the method of data collection, analysis and interpretation consisted of individual qualitative interviews and meaning condensation, inspired by Kvale and Brinkmann.
RESULTS
The study reveals how patients with incurable oesophageal cancer experience metaphorically to end up at a "table in the corner". The patients experience loss of dignity, identity and community. The study illuminated how illness and symptoms impact and control daily life and social relations, described under these subheadings: "sense of isolation"; "being in a zombie-like state"; "one day at a time"; and "at sea". Patients feel alone with the threat to their lives and everyday existence; they feel isolated due to the inhibiting symptoms of their illness, anxiety, worry and daily losses and challenges.
CONCLUSIONS
The patients' lives are turned upside down, and they experience loss of health, function and familiar, daily habits. The prominent issues for the patients are loneliness and lack of continuity. As far as their normal everyday lives, social networks and the health system are concerned, patients feel they have been banished to a "table in the corner". These patients have a particular need for healthcare professionals who are dedicated to identifying what can be done to support the patients in their everyday lives, preserve dignity and provide additional palliative care.
背景
无法治愈的食道癌患者常常受到存在困扰和生活质量下降的影响。了解这群患者的生活状况对于提供相关的姑息治疗和支持至关重要。本研究的目的是阐明食道癌如何扰乱患者的生活，以及患者如何体验和适应患病生活。
方法
对 17 名接受食道癌姑息治疗的患者进行了访谈，这些患者在诊断后 1-23 个月接受了访谈。认识论方法受现象学和解释学的启发，数据收集、分析和解释的方法由个人定性访谈和意义凝结组成，灵感来自 Kvale 和 Brinkmann。
结果
本研究揭示了无法治愈的食道癌患者如何体验到最终“坐在角落里的桌子旁”。患者经历尊严、身份和社区的丧失。研究阐明了疾病和症状如何影响和控制日常生活和社会关系，这些内容下分为以下小标题：“孤立感”；“处于僵尸状态”；“一天一天”；“茫然不知所措”。患者感到自己独自面对生命和日常生活的威胁；他们感到孤立，因为他们的疾病抑制症状、焦虑、担忧以及日常的损失和挑战。
结论
患者的生活被颠覆，他们经历健康、功能和熟悉的日常习惯的丧失。患者最突出的问题是孤独和缺乏连续性。就他们的日常生活、社交网络和卫生系统而言，患者感到自己被放逐到“角落里的桌子”。这些患者特别需要致力于确定如何在日常生活中为患者提供支持、维护尊严和提供额外姑息治疗的医疗保健专业人员。
Zotero 插件