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“这种病让我变得虚弱。它的所作所为就像盗窃一样”:一项关于哮喘患者生活体验的定性元综合研究。

"This illness diminishes me. What it does is like theft": A qualitative meta-synthesis of people's experiences of living with asthma.

机构信息

Centre for Values, Ethics & the Law in Medicine, University of Sydney, Sydney, NSW, Australia.

Faculty of Pharmacy, University of Sydney, Sydney, NSW, Australia.

出版信息

Health Expect. 2018 Feb;21(1):23-40. doi: 10.1111/hex.12605. Epub 2017 Aug 2.

Abstract

BACKGROUND

What matters to people in their everyday experiences of living with asthma is influenced by a diverse range of personal, social, medical and environmental factors. Previous reviews of the asthma literature have largely focused on medical aspects of asthma or specific population groups with particular needs.

OBJECTIVE

To identify, describe and synthesize from the available qualitative literature the views and experiences of adults living with asthma.

METHOD

We systematically searched for qualitative studies reporting on the personal experience of living with asthma. A meta-synthesis approach was used to analyse and interpret the data. Key themes relating to personal perspectives on asthma were identified and grouped into overarching concepts.

RESULTS

We identified 26 studies. There was a paucity of literature on the physical burden of asthma symptoms and the role of social support. Our synthesis generated a central concept of the "work" associated with living with asthma: work was of a personal nature, and at times an intensely emotional experience. Individuals tailored their behaviour in response to demands of the physical and social environment, including interactions with health-care professionals.

CONCLUSION

This is the first systematic review of the qualitative literature reporting on people's own perspectives of living with asthma. Our findings draw attention to the nuances and sensitivities surrounding patient experiences of self-management. Medical care is a central plank of managing chronic conditions, but our health-care systems are now expected to deliver patient-centred care. Considering the broader aspects of asthma management, beyond that of symptoms and treatment, will help to facilitate comprehensive care.

摘要

背景

人们在日常生活中患哮喘的经历受到个人、社会、医疗和环境等多种因素的影响。之前对哮喘文献的综述主要集中在哮喘的医学方面或具有特殊需求的特定人群。

目的

从现有的定性文献中确定、描述和综合成年人患哮喘的观点和体验。

方法

我们系统地搜索了报告个人哮喘体验的定性研究。采用元综合方法分析和解释数据。确定与个人对哮喘看法相关的主要主题,并将其分组为总体概念。

结果

我们确定了 26 项研究。关于哮喘症状的身体负担和社会支持作用的文献很少。我们的综合分析产生了一个与哮喘相关的核心概念:“工作”:工作具有个人性质,有时是一种强烈的情感体验。个人根据身体和社会环境的要求调整自己的行为,包括与医疗保健专业人员的互动。

结论

这是对报告人们自身哮喘生活观点的定性文献的首次系统综述。我们的研究结果提请注意围绕患者自我管理体验的细微差别和敏感性。医疗保健是管理慢性病的核心内容,但我们的医疗保健系统现在期望提供以患者为中心的护理。考虑到哮喘管理的更广泛方面,不仅仅是症状和治疗,将有助于促进全面护理。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/de44/5750696/83d7a9d25826/HEX-21-23-g001.jpg

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