依靠自己的指南针应对死胡同:纤维肌痛背景下疾病和治疗模式的定性研究

IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE
Maité Van Alboom, Fleur Baert, Sónia F Bernardes, Piet Bracke, Liesbet Goubert
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引用次数: 0

摘要

纤维肌痛缺乏一个连贯的疾病和治疗模式,其中包括一套概念性的想法,形成个人对疼痛的感知和理解,其原因和维持因素,以及管理策略。开发个性化的疾病模型,可以指导治疗计划,减轻不确定感,这一点至关重要。本研究调查了纤维肌痛患者如何在当前医疗保健系统中发展个人疾病和治疗模式,并探讨了他们在这一过程中的经历。对15名患有纤维肌痛的顺性女性进行半结构化访谈,采用自反性主题分析。分析产生了两个主题,每个主题包括两个副主题。第一个主题包括由于医疗保健系统的生物医学角度而难以建立全面的疾病模型;第二个主题描述了通过构建自己的疾病和治疗模式,参与者(重新)获得对疼痛管理的所有权和代理权的重要性。在这项研究中,大多数女性被困在生物医学保健网络中,没有提供明确的疾病和治疗模式。因此,大多数妇女通过发展自己的疾病和治疗模式(自我赋权)获得了这一进程的所有权。相反,少数女性感到无能为力和瘫痪。这项研究强调了在慢性疼痛管理中促进患者赋权的重要性。在纤维肌痛的治疗中,机构被低估了,需要更彻底的检查。增加对代理的认识可以提高治疗效果。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Coping With a Dead End by Relying on Your Own Compass: A Qualitative Study on Illness and Treatment Models in the Context of Fibromyalgia.

Fibromyalgia lacks a coherent illness and treatment model, which includes a set of conceptual ideas shaping individuals' perceptions and understandings of pain, its causing and maintaining factors, and management strategies. Developing personalized illness models that can guide treatment plans and alleviate feelings of uncertainty is of crucial importance. This study investigates how individuals with fibromyalgia develop a personal illness and treatment model while navigating the current healthcare system and explore their experiences during this process. Semi-structured interviews were conducted with 15 cis women with fibromyalgia, which were analyzed using reflexive thematic analysis. The analysis produced two themes, each including two subthemes. The first theme encompassed the difficulty of developing a comprehensive illness model due to the biomedical perspective of the healthcare system; the second theme described the importance of participants (re)gaining ownership and agency over their pain management, by constructing their own illness and treatment model. Most women in this study got stuck in the biomedical healthcare web not being provided with a clear illness and treatment model. Consequently, most women gained ownership of this process by developing their personal illness and treatment model (self-empowerment). Conversely, a few women felt powerless and paralyzed. This study underscores the importance of promoting patient empowerment in chronic pain management. Agency is undervalued in the treatment of fibromyalgia and warrants more thorough examination. Increasing knowledge about agency could enhance treatment effectiveness.

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来源期刊
CiteScore
6.80
自引率
6.20%
发文量
109
期刊介绍: QUALITATIVE HEALTH RESEARCH is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.
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