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癌症护理的逻辑负担:一项定性研究。

Logistic burdens of cancer care: A qualitative study.

机构信息

School of Medicine, University of Minnesota, Minneapolis, Minnesota, United States of America.

Division of Epidemiology and Community Health, University of Minnesota, Minneapolis, Minnesota, United States of America.

出版信息

PLoS One. 2024 Apr 4;19(4):e0300852. doi: 10.1371/journal.pone.0300852. eCollection 2024.

Abstract

Cancer treatment often creates logistic conflicts with everyday life priorities; however, these challenges and how they are subjectively experienced have been largely unaddressed in cancer care. Our goal was to describe time and logistic requirements of cancer care and whether and how they interfered with daily life and well-being. We conducted interviews with 20 adults receiving cancer-directed treatment at a single academic cancer center. We focused on participants' perception of the time, effort, and energy-intensiveness of cancer care activities, organization of care requirements, and preferences in how to manage the logistic burdens of their cancer care. Participant interview transcripts were analyzed using an inductive thematic analysis approach. Burdens related to travel, appointment schedules, healthcare system navigation, and consequences for relationships had roots both at the system-level (e.g. labs that were chronically delayed, protocol-centered rather than patient-centered bureaucratic requirements) and in individual circumstances (e.g. greater stressors among those working and/or have young children versus those who are retired) that determined subjective burdensomeness, which was highest among patients who experienced multiple sources of burdens simultaneously. Our study illustrates how objective burdens of cancer care translate into subjective burden depending on patient circumstances, emphasizing that to study burdens of care, an exclusive focus on objective measures does not capture the complexity of these issues. The complex interplay between healthcare system factors and individual circumstances points to clinical opportunities, for example helping patients to find ways to meet work and childcare requirements while receiving care.

摘要

癌症治疗常常与日常生活的优先事项产生冲突;然而,在癌症护理中,这些挑战以及患者如何主观地体验这些挑战,在很大程度上仍未得到解决。我们的目标是描述癌症治疗的时间和后勤需求,以及这些需求是否以及如何干扰日常生活和幸福感。我们对在一家学术癌症中心接受癌症定向治疗的 20 名成年人进行了访谈。我们重点关注参与者对癌症护理活动的时间、精力和能量密集程度的感知、护理需求的组织以及管理癌症护理后勤负担的偏好。使用归纳主题分析方法对参与者访谈记录进行了分析。与旅行、预约安排、医疗保健系统导航以及对人际关系的影响相关的负担既有系统层面的根源(例如实验室经常延迟、以方案为中心而不是以患者为中心的官僚要求),也有个人情况的根源(例如,工作和/或有年幼子女的患者比退休患者的压力更大),这些因素决定了主观负担的程度,同时面临多种负担源的患者的主观负担程度最高。我们的研究说明了癌症护理的客观负担如何根据患者的情况转化为主观负担,强调为了研究护理负担,仅关注客观措施并不能捕捉到这些问题的复杂性。医疗保健系统因素和个人情况之间的复杂相互作用为临床提供了机会,例如帮助患者在接受治疗的同时找到满足工作和育儿要求的方法。

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