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西班牙医疗保健专业人员对克罗恩病患者经历的看法。一项定性研究。

Healthcare professionals' views of the experiences of individuals living with Crohn's Disease in Spain. A qualitative study.

作者信息

García-Sanjuán Sofía, Lillo-Crespo Manuel, Richart-Martínez Miguel, Sanjuán-Quiles Ángela

机构信息

Nursing Department, Health Sciences Faculty, University of Alicante, San Vicente del Raspeig, Spain.

出版信息

PLoS One. 2018 Jan 23;13(1):e0190980. doi: 10.1371/journal.pone.0190980. eCollection 2018.

Abstract

Crohn's Disease (CD) in Spain lacks of a unified National Clinical Pathway and not even any early detection program and professional follow-up outpatient attention once it has been diagnosed. Little is known about the Spanish health professionals' views of the experiences of individuals living with Crohn's Disease nationwide and also about how the Spanish Health System faces this situation. A qualitative research method was conducted to explore this topic through in-depth interviews with eleven healthcare professionals, who represented different clinics treating people with CD from the province of Alicante (Spain). Three topics and seven sub-topics were derived from the analysis of the content emerging from the interviews. The three main topics were: the healthcare system as a hindrance for ongoing treatment of CD, the impact of the disease, support networks. The knowledge of CD gained by healthcare professionals, in the contexts studied here within, with regards to the psychosocial aspects and the experience of those living with the disease and their immediate circles, is poor, if not null on an academic level, becoming experiential on their incorporation into the professional field. Additionally, a priori, they lack the tools to address the doubts and concerns of patients from the moment of diagnosis through the ongoing care of the patient. Organizational hindrances, such as the lack of time and consensual guidelines for adequately monitoring CD patients in Alicante (Spain), further restrict the patient-professional relationship. Due to the consensus established by the National Agency regulating the contents of the Health Professions' Education and Training across the country, we are assuming that the phenomenon highlighted may be similar in other parts of Spain. Therefore, it can be said that healthcare professionals have a limited understanding of the impact of CD on the day-to-day life of those affected, not being considered a part of the CD patients' formal support network. Nonetheless, they are conscious of this limitation and advocate for multidisciplinary teams as the best means of attending to people living with CD. Our study outcomes may represent the first step onto identifying strategies and best practices for establishing an effective therapeutic relationship, as well as any hindering factors.

摘要

在西班牙,克罗恩病(CD)缺乏统一的国家临床路径,甚至没有任何早期检测项目,且在确诊后也没有专业的后续门诊护理。对于西班牙医疗专业人员对全国克罗恩病患者经历的看法,以及西班牙医疗系统如何应对这种情况,人们知之甚少。我们采用定性研究方法,通过对11名医疗专业人员进行深入访谈来探讨这一主题,这些人员代表了西班牙阿利坎特省不同治疗克罗恩病患者的诊所。通过对访谈中出现的内容进行分析,得出了三个主题和七个子主题。三个主要主题分别是:医疗系统对克罗恩病持续治疗的阻碍、疾病的影响、支持网络。在此研究背景下,医疗专业人员对克罗恩病在心理社会方面以及患者及其直系亲属患病经历的了解很差,在学术层面即便不是毫无了解,也非常有限,只有在融入专业领域后才成为经验性知识。此外,从一开始,他们就缺乏工具来解决患者从诊断到持续护理期间的疑问和担忧。组织方面的阻碍,比如在西班牙阿利坎特缺乏足够时间和共识性指南来充分监测克罗恩病患者,进一步限制了医患关系。由于国家机构对全国卫生专业教育和培训内容进行规范所达成的共识,我们假设所突出的现象在西班牙其他地区可能也类似。因此,可以说医疗专业人员对克罗恩病对患者日常生活的影响理解有限,没有被视为克罗恩病患者正式支持网络的一部分。尽管如此,他们意识到了这一局限性,并倡导多学科团队是照顾克罗恩病患者的最佳方式。我们的研究结果可能代表了确定建立有效治疗关系的策略和最佳实践以及任何阻碍因素的第一步。

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