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血友病医疗保健专业人员:HERO倡议国际定性研究的见解

Health care professionals dealing with hemophilia: insights from the international qualitative study of the HERO initiative.

作者信息

Potì Silvia, Palareti Laura, Cassis Frederica Rmy, Brondi Sonia

机构信息

Department of Education Studies "Giovanni Maria Bertin", University of Bologna, 40126 Bologna, Italy.

Faculty of Medicine Clinics Hospital, University of São Paulo, São Paulo, SP, 05403-000, Brazil.

出版信息

J Multidiscip Healthc. 2019 May 9;12:361-375. doi: 10.2147/JMDH.S201759. eCollection 2019.

DOI:10.2147/JMDH.S201759
PMID:31190855
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6513176/
Abstract

Assessing the viewpoints of health care professionals concerning their work with chronic patients is a relatively new research topic, widely overlooked in the literature. However, understanding their subjective work experience is highly relevant for identifying problems and perceived resources, enhancing health service organisation, improving relationships or communication with patients, and maintaining well-being. Qualitative data from the "Haemophilia Experience, Results and Opportunities" Initiative - a research program aimed at investigating the psychosocial aspects of hemophilia - were used to evaluate the experiences of 62 professionals from seven countries around the world. Semi-structured interviews were submitted to thematic analysis of elementary contexts with the aid of T-Lab software. Five dominant themes emerged, identifying the main challenges that professionals have to deal with in their everyday work practice: caring for impaired adult patients; handling policies and stakeholders; providing counselling on diagnosis and reproductive choices; considering the role of family dynamics; coping with adolescent patients. The outcomes of the study provide an opportunity to develop the area of the non-technical skills in the core curriculum of those who work with chronic illnesses by focusing on cross-professional competences and by improving a comprehensive care model for hemophilia patients.

摘要

评估医疗保健专业人员对其与慢性病患者工作的看法是一个相对较新的研究课题,在文献中广泛被忽视。然而,了解他们的主观工作体验对于识别问题和感知到的资源、加强卫生服务组织、改善与患者的关系或沟通以及维持幸福感高度相关。来自“血友病经历、结果与机会”倡议(一项旨在调查血友病心理社会方面的研究项目)的定性数据被用于评估来自世界七个国家的62名专业人员的经历。借助T-Lab软件,对半结构化访谈进行了基本情境的主题分析。出现了五个主要主题,确定了专业人员在日常工作实践中必须应对的主要挑战:照顾成年残疾患者;处理政策和利益相关者;就诊断和生殖选择提供咨询;考虑家庭动态的作用;应对青少年患者。该研究结果提供了一个机会,通过关注跨专业能力并改进血友病患者的综合护理模式,来发展从事慢性病工作的人员核心课程中的非技术技能领域。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b092/6513176/691349ae3a4d/JMDH-12-361-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b092/6513176/691349ae3a4d/JMDH-12-361-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b092/6513176/691349ae3a4d/JMDH-12-361-g0001.jpg

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本文引用的文献

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J Patient Exp. 2018 Jun;5(2):140-146. doi: 10.1177/2374373517738234. Epub 2017 Nov 6.
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Int J Qual Stud Health Well-being. 2015 Nov 16;10:28915. doi: 10.3402/qhw.v10.28915. eCollection 2015.
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成人乙型血友病患者及儿童乙型血友病患者照料者的患者报告结局与自我报告特征之间的相关性:B-HERO-S研究分析
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社会工作者对男性血友病管理及社区支持利用情况的认知与观察
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Haemophilia Experiences, Results and Opportunities (HERO) study: treatment-related characteristics of the population.血友病经历、结果与机会(HERO)研究:该人群与治疗相关的特征
Haemophilia. 2015 Jan;21(1):e26-38. doi: 10.1111/hae.12545. Epub 2014 Nov 7.
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Abstracts of the WFH 2014 World Congress, May 11-15, 2014, Melbourne, Australia.2014年世界血友病大会摘要,2014年5月11日至15日,澳大利亚墨尔本。
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