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绘制纤维肌痛症中忽视的社会组织情况:运用史密斯的《为人民的社会学》为以系统为重点的文献综述提供信息

Mapping the Social Organisation of Neglect in the Case of Fibromyalgia: Using Smith's Sociology for People to Inform a Systems-Focused Literature Review.

作者信息

Cupit Caroline, Finlay Teresa, Pope Catherine

机构信息

Nuffield Department of Primary Care Health Sciences, University of Oxford, Radcliffe Observatory Quarter, Oxford, UK.

出版信息

Sociol Health Illn. 2025 Feb;47(2):e70008. doi: 10.1111/1467-9566.70008.

DOI:10.1111/1467-9566.70008
PMID:39888645
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11784928/
Abstract

Fibromyalgia is a syndrome characterised by persistent unexplained pain and fatigue. People with fibromyalgia report receiving little support to manage symptoms, difficult interactions with healthcare practitioners and stigma associated with this contested condition. In this article, we employ Dorothy E Smith's Sociology for People to undertake a systems-focused literature review from the standpoint of people with fibromyalgia, moving beyond individual subjectivities to map how problems are socially organised. This is a novel application of a Sociology for People which, although previously used to structure research projects, has not previously been reported as a framework for literature review. Our findings highlight how, within a biomedically orientated healthcare system, practitioners' activities are organised to withdraw support from people with fibromyalgia and characterise problems as "psychological". Those looking to make service improvements for this patient group need to specifically challenge biomedical systems and ideology, in order to promote alternative models of care. We highlight a Sociology for People as a powerful lens for systems-focused literature review that links frontline experiences with dominant power relations, and provides an alternative to traditional qualitative evidence syntheses. Additionally, the theoretically-grounded and creative use of published literatures is an ethical approach adding value to extant research.

摘要

纤维肌痛是一种以持续不明原因疼痛和疲劳为特征的综合征。纤维肌痛患者表示,在症状管理方面几乎得不到支持,与医护人员的互动困难,且这种存在争议的病症还会带来污名。在本文中,我们运用多萝西·E·史密斯的《面向大众的社会学》,从纤维肌痛患者的角度进行以系统为重点的文献综述,超越个体主观性,以描绘问题是如何在社会层面上组织起来的。这是对《面向大众的社会学》的一种新颖应用,尽管此前它被用于构建研究项目,但此前尚未有将其作为文献综述框架的报道。我们的研究结果凸显了在以生物医学为导向的医疗体系中,医护人员的活动是如何组织起来,减少对纤维肌痛患者的支持,并将问题定性为“心理问题”的。那些希望为该患者群体改善服务的人需要特别挑战生物医学体系和意识形态,以推广替代护理模式。我们强调《面向大众的社会学》是进行以系统为重点的文献综述的有力视角,它将一线经验与主导权力关系联系起来,为传统的定性证据综合提供了替代方案。此外,对已发表文献进行基于理论且富有创造性的运用是一种符合伦理的方法,能为现有研究增添价值。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/e8b7/11784928/97c6e5575f48/SHIL-47-0-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/e8b7/11784928/97c6e5575f48/SHIL-47-0-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/e8b7/11784928/97c6e5575f48/SHIL-47-0-g001.jpg

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本文引用的文献

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Patient and primary care practitioners' perspectives on consultations for fibromyalgia: a qualitative evidence synthesis.患者和初级保健医生对纤维肌痛咨询的看法:定性证据综合分析。
Prim Health Care Res Dev. 2023 Sep 26;24:e58. doi: 10.1017/S1463423623000506.
2
Chronic Struggle: An Institutional Ethnography of Chronic Pain and Marginalization.《长期抗争:慢性疼痛与边缘化的制度民族志》
J Pain. 2023 Mar;24(3):437-448. doi: 10.1016/j.jpain.2022.10.004. Epub 2022 Oct 14.
3
"It's All in Your Head": A Meta-Synthesis of Qualitative Research About Disenfranchising Talk Experienced by Female Patients with Chronic Overlapping Pain Conditions.
“这都在你脑子里”:对女性慢性重叠性疼痛患者经历的被剥夺话语权的定性研究的元综合。
Health Commun. 2023 Oct;38(11):2501-2515. doi: 10.1080/10410236.2022.2081046. Epub 2022 Jun 12.
4
Public health in the making: Dietary innovators and their on-the-job sociology.正在形成中的公共卫生:饮食创新者及其工作社会学。
Soc Sci Med. 2022 Jul;305:115001. doi: 10.1016/j.socscimed.2022.115001. Epub 2022 May 5.
5
Helen Salisbury: Managing feelings of failure.海伦·索尔兹伯里:应对失败感。
BMJ. 2022 May 17;377:o1218. doi: 10.1136/bmj.o1218.
6
The Social Course of Fibromyalgia: Resisting Processes of Marginalisation.纤维肌痛的社会病程:抵抗边缘化过程。
Int J Environ Res Public Health. 2021 Dec 29;19(1):333. doi: 10.3390/ijerph19010333.
7
Questioning Biomedicine's Privileging of Disease and Measurability.质疑生物医学对疾病和可度量性的过分重视。
AMA J Ethics. 2021 Jul 1;23(7):E537-541. doi: 10.1001/amajethics.2021.537.
8
"No one wants to look after the fibro patient". Understanding models, and patient perspectives, of care for fibromyalgia: reviews of current evidence.“没有人愿意照顾纤维肌痛患者”。理解纤维肌痛照护的模式和患者观点:对现有证据的综述。
Pain. 2020 Aug;161(8):1716-1725. doi: 10.1097/j.pain.0000000000001870.
9
The heart sink doctor.令人沮丧的医生。 (不过原句表述不太准确规范,正常可能是 “The heart - sinking doctor” 之类更合适的表达 )
BMJ. 2019 Nov 26;367:l6660. doi: 10.1136/bmj.l6660.
10
Overruling uncertainty about preventative medications: the social organisation of healthcare professionals' knowledge and practices.推翻预防性药物使用的不确定性:医疗保健专业人员知识和实践的社会组织。
Sociol Health Illn. 2020 Aug;42 Suppl 1(Suppl 1):114-129. doi: 10.1111/1467-9566.12998. Epub 2019 Nov 21.