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从非正式照护者角度看获得正规癌症护理的障碍:一项定性研究

Barriers to accessing formal cancer care from the perspective of informal caregivers: a qualitative study.

作者信息

Campaña Carla, Cabieses Báltica, Obach Alexandra, Vezzani Francisca, Estay Angela, Carrillo Diego

机构信息

Center of Global Intercultural Health (CeSGI), Facultad de Medicina Clínica Alemana Universidad del Desarrollo, Facultad de Psicología Universidad del Desarrollo, Santiago, Chile.

Centre for Cancer Prevention and Control (CECAN), FONDAP 152220002 ANID, Santiago, Chile.

出版信息

Support Care Cancer. 2025 Apr 21;33(5):400. doi: 10.1007/s00520-025-09426-5.

Abstract

BACKGROUND

Cancer is a significant public health concern in Chile, with breast and lung cancers being among the most common and deadly types. Informal caregivers provide essential healthcare procedures and physical, emotional, and financial support to cancer patients, taking on significant responsibilities they must balance with their lives. Many of these responsibilities are directly related to healthcare and patient care processes, so the healthcare system is critical to the caregiver's experience. This study aims to identify health system barriers in the healthcare of lung and breast cancer patients through the voice of informal caregivers in Chile.

METHODS

An exploratory qualitative case study design was used, following the COREQ criteria. Twenty informal caregivers of adult breast and lung cancer patients were recruited from different regions of Chile through snowball sampling and online outreach. Semi-structured interviews were conducted between March and June 2023. Data were analyzed using deductive thematic analysis guided by Tanahashi's effective coverage framework, which focuses on four dimensions of healthcare access: availability, accessibility, acceptability, and contact. Atlas.ti software was used for coding and thematic organization.

RESULTS

Caregivers reported significant barriers across the four dimensions: (i) availability, lack of medical equipment and home care resources, especially in public hospitals; (ii) accessibility, long wait times, fragmented care across institutions, and high out-of-pocket costs, particularly for those outside the public health insurance (FONASA) coverage; (iii) acceptability, inadequate communication from healthcare providers, with limited information on diagnosis and prognosis; (iv) contact, poor continuity of care, with a lack of coordination between healthcare providers, leading to feelings of isolation and frustration among caregivers.

CONCLUSIONS

The study reveals critical gaps in Chile's healthcare system. Caregivers play an essential role in patient care but receive insufficient support from the healthcare system. Addressing the identified barriers, including improving communication, coordination, and support for caregivers, is crucial for achieving better healthcare outcomes and reducing disparities in cancer care. These findings have significant implications for policymakers, highlighting the need for reforms to support caregivers and enhance the cancer care continuum in Chile.

摘要

背景

癌症是智利一个重大的公共卫生问题,乳腺癌和肺癌是最常见且致命的癌症类型。非正式护理人员为癌症患者提供基本的医疗程序以及身体、情感和经济支持,承担着重大责任,且必须在生活中平衡这些责任。其中许多责任与医疗保健和患者护理过程直接相关,因此医疗保健系统对护理人员的体验至关重要。本研究旨在通过智利非正式护理人员的声音,识别肺癌和乳腺癌患者医疗保健中的卫生系统障碍。

方法

采用探索性定性案例研究设计,遵循COREQ标准。通过滚雪球抽样和在线宣传,从智利不同地区招募了20名成年乳腺癌和肺癌患者的非正式护理人员。2023年3月至6月进行了半结构化访谈。数据采用由田中有效覆盖框架指导的演绎主题分析进行分析,该框架侧重于医疗保健可及性的四个维度:可获得性、可及性、可接受性和接触。使用Atlas.ti软件进行编码和主题组织。

结果

护理人员报告了四个维度上的重大障碍:(i)可获得性,缺乏医疗设备和家庭护理资源,尤其是在公立医院;(ii)可及性,等待时间长、各机构护理碎片化以及自付费用高,特别是对于那些不在公共医疗保险(FONASA)覆盖范围内的人;(iii)可接受性,医疗服务提供者沟通不足,关于诊断和预后的信息有限;(iv)接触,护理连续性差,医疗服务提供者之间缺乏协调,导致护理人员感到孤立和沮丧。

结论

该研究揭示了智利医疗保健系统中的关键差距。护理人员在患者护理中发挥着重要作用,但从医疗保健系统获得的支持不足。解决已识别的障碍,包括改善沟通、协调以及对护理人员的支持,对于实现更好的医疗保健结果和减少癌症护理差距至关重要。这些发现对政策制定者具有重大意义,凸显了在智利进行改革以支持护理人员并加强癌症护理连续性的必要性。

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