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患者的疾病叙事——从健康到患有不可治愈的癌症:疾病轨迹中与医生的相遇。

Patients' illness narratives-From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory.

机构信息

Department of Postgraduate Studies, VID Specialized University, Bergen, Norway.

Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, Bergen, Norway.

出版信息

Cancer Rep (Hoboken). 2020 Apr;3(2):e1227. doi: 10.1002/cnr2.1227. Epub 2019 Nov 19.

Abstract

BACKGROUND

Narrative medicine emphasizes how stories can increase the understanding of patients' experiences and give important insights into how patients interpret and strive to make meaning in the situation they find themselves in.

AIM

The aim of this study was to gain insight into the illness narratives of cancer patients, from the day they suspected that something was wrong until living with incurable cancer.

METHODS AND RESULTS

Six men and seven women, aged 47 to 79 years, diagnosed with metastatic cancer and undergoing chemotherapy with life-prolonging intent in an oncology outpatient clinic, were asked to tell their illness stories as freely as possible, without guiding questions. Stories were tape recorded, transcribed, and analyzed by a thematic narrative analysis. Encounters with doctors through the disease trajectory were highlighted by all narrators. Several informants described poor communication and consequences in the form of "doctors delay" and substandard psychosocial care. Continuity in follow-up and the physician's ability or inability to break bad news and adapt information to the patient's wishes and preferences were particularly emphasized.

CONCLUSION

A key finding was the importance of the doctor's role throughout the whole trajectory. A good doctor-patient relationship was characterized by continuity of care in follow-up, and trust acquired over time, based on the physician's thorough medical knowledge combined with sensitive communication and empathy.

摘要

背景

叙事医学强调故事如何能增进对患者体验的理解,并深入了解患者如何在自身所处的情境中对病情进行解读并努力赋予其意义。

目的

本研究旨在深入了解癌症患者从怀疑患病到确诊癌症晚期并接受化疗的疾病叙述。

方法和结果

在肿瘤门诊接受化疗以延长生命的 6 名男性和 7 名女性癌症患者(年龄 47-79 岁),被要求尽可能自由地讲述自己的疾病故事,不设引导性问题。使用主题叙事分析对故事进行录音、转录和分析。所有讲述者都强调了疾病轨迹中与医生的接触。一些受访者描述了沟通不畅的情况,以及“医生延误”和心理社会关怀不足的后果。后续治疗的连续性以及医生能否及时传达坏消息并根据患者的意愿和偏好调整信息,尤其受到重视。

结论

一个重要的发现是医生在整个病程中的角色至关重要。良好的医患关系的特点是后续治疗的连续性,以及基于医生全面的医学知识和敏感的沟通与同理心而逐渐建立起来的信任。

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