Department of Surgery, Odense University Hospital, Odense, Denmark.
Institute of Clinical Research, University of Southern Denmark, Odense M, Denmark.
Int J Qual Stud Health Well-being. 2023 Dec;18(1):2170018. doi: 10.1080/17482631.2023.2170018.
The curative oesophageal cancer continuum-diagnosis, treatment and survivorship represents different phases with its own challenges for the involved parties. The process of treatment decisions and interactions between patients with oesophageal cancer (EC), relatives and health professionals is vital yet not well described. The purpose of the study was to explore patients' and relatives' experiences with the process of decision-making through the EC illness and treatment trajectory.
Longitudinal explorative design was employed based on ethnographic fieldwork in the form of participant observations inspired by the American anthropologist James Spradley.
Sixteen patients and 18 relatives were recruited for participant observations. In total, 184 hours of participant observations were conducted. The study showed that decision-making was filled with tension and edginess. Four themes were identified: 1) The encounter with the medical authority, 2) The need to see the big picture in the treatment trajectory, 3) A predetermined treatment decision, and 4) Meeting numerous different health professionals.
The EC trajectory and decision-making were filled with anxiety. Patients and relatives lacked an overview of the treatment pathway, leading to their role in decision-making often being governed by the medical authority. Timing information and continuity are vital factors in decision-making.
食管癌的治疗连续性——诊断、治疗和生存，代表了不同的阶段，每个阶段都有其自身的挑战。然而，治疗决策过程以及食管癌患者、亲属和卫生专业人员之间的相互作用尚未得到充分描述。本研究旨在通过食管癌疾病和治疗轨迹，探讨患者和亲属在决策过程中的体验。
采用纵向探索性设计，基于美国人类学家詹姆斯·斯普拉德雷（James Spradley）启发的参与观察进行人种学实地工作。
招募了 16 名患者和 18 名亲属进行参与观察。总共进行了 184 小时的参与观察。研究表明，决策过程充满了紧张和焦虑。确定了四个主题：1）与医疗权威的接触，2）治疗轨迹中需要看到全局，3）预先确定的治疗决策，4）与众多不同的卫生专业人员会面。
食管癌轨迹和决策过程充满了焦虑。患者和亲属缺乏对治疗途径的全面了解，导致他们在决策中的作用往往受到医疗权威的支配。时间信息和连续性是决策的重要因素。
