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Table in the corner: a qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care.
BMC Palliative Care ( IF 2.5 ) Pub Date : 2019-07-22 , DOI: 10.1186/s12904-019-0445-2
Louise Laursen 1 , Mai Nanna Schønau 2, 3 , Heidi Maria Bergenholtz 4 , Mette Siemsen 2 , Merete Christensen 2 , Malene Missel 2
Affiliation  

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.

中文翻译:

拐角处的桌子:对姑息治疗中食道癌患者的生活状况和日常生活观点的定性研究。

背景技术无法治愈的食道癌患者经常受到生存困扰和生活质量下降的影响。有关该患者群体生活状况的知识对于提供相关的姑息治疗和支持很重要。这项研究的目的是阐明无法治愈的食道癌如何破坏患者的生活,以及患者如何体验和适应这种疾病的生活。方法17例接受食道癌姑息治疗的患者在诊断后1-23个月接受了访谈。认识论的方法受到现象学和诠释学的启发,而数据收集,分析和解释的方法则是由Kvale和Brinkmann的启发而进行的,包括个体定性访谈和含义浓缩。结果该研究揭示了无法治愈的食道癌患者如何隐喻地经历经历,最终成为“角落里的桌子”。患者经历了尊严,身份和社区的丧失。该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,在这些小标题下进行了描述:“孤立感”;“处于僵尸般的状态”;“一次一天”;和“海上”。患者感到孤独,威胁着他们的生命和日常生活;由于疾病,焦虑,忧虑以及日常损失和挑战等抑制性症状,他们感到孤立无援。结论患者的生活被颠倒了,他们失去了健康,功能和熟悉的日常习惯。对于患者而言,突出的问题是孤独和缺乏连续性。就正常的日常生活,社交网络和卫生系统而言,患者感到被放逐到“角落里的桌子”上。这些患者特别需要医疗保健专业人员,他们致力于确定可以采取哪些措施来支持患者的日常生活,维护尊严并提供额外的姑息治疗。
更新日期:2019-07-22
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