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归属感的障碍:严重哮喘患者的关联性需求。

Barriers to belonging: the need for relatedness amongst people living with severe asthma.

机构信息

School of Pharmacy, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.

Woolcock Institute of Medical Research, University of Sydney, Sydney, NSW, Australia.

出版信息

J Asthma. 2021 Jan;58(1):1-9. doi: 10.1080/02770903.2019.1656230. Epub 2019 Aug 26.

Abstract

BACKGROUND

Severe asthma, that is, asthma that is relatively refractory to conventional therapy, affects 3-10% of the asthma population. It is associated with a significant burden affecting social and working life. Supporting the need for relatedness facilitates health behavior change and improves overall well-being. However, this has not been closely examined from the patients' perspective. This study examines relatedness in patients' narratives about their experiences of living with and managing severe asthma.

METHODS

Rigorous and systematic qualitative research methods were used to conduct in-depth semi-structured interviews. Participants were included if they were ≥18 years old and diagnosed with severe asthma. Interviews were video and/or audio recorded, transcribed, and analyzed inductively and deductively informed by the self-determination theory construct of relatedness. Thirty-eight face-to-face interviews, lasting 1.5 - 4 hours, were conducted around Australia.

RESULTS

Our findings show that living with a debilitating and unpredictable illness challenged participants' sense of relatedness. Two themes emerged: 1) and 2) . For people living with severe asthma, feeling cared for, understood, connected to others and having a sense of belonging was valued. Their overall psychological well-being was dependent upon their sense of connection to others.

CONCLUSION

Future research should consider our findings of the challenges faced to preserve their sense of relatedness, when developing and implementing patient-driven self-management interventions for those living with severe asthma.

摘要

背景

重度哮喘,即对常规治疗相对难治的哮喘,影响了 3-10%的哮喘患者。它与显著的负担相关,影响社会和工作生活。支持相关性有助于促进健康行为的改变,并提高整体幸福感。然而,这一点尚未从患者的角度进行密切检查。本研究从患者对其重度哮喘管理和生活经历的叙述中考察相关性。

方法

采用严格和系统的定性研究方法进行深入的半结构式访谈。如果参与者年龄≥18 岁且被诊断为重度哮喘,则纳入研究。访谈采用视频和/或音频记录,转录,并根据自我决定理论的相关性结构进行归纳和演绎分析。在澳大利亚各地进行了 38 次面对面访谈,持续 1.5-4 小时。

结果

我们的研究结果表明,患有衰弱和不可预测的疾病挑战了参与者的相关性感知。出现了两个主题:1)和 2)。对于患有重度哮喘的人来说,被关心、被理解、与他人建立联系和归属感是很重要的。他们的整体心理健康取决于他们与他人的联系感。

结论

未来的研究应该考虑到我们发现的在保护他们的相关性感知方面所面临的挑战,当为那些患有重度哮喘的患者开发和实施以患者为驱动的自我管理干预措施时。

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