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原发性胆汁性胆管炎患者的症状感知与应对:在SOMA.LIV背景下的定性研究

[Symptom perception and coping in patients with primary biliary cholangitis: a qualitative study in the context of SOMA.LIV].

作者信息

Hasenbank Nele, Buck Laura, Maehder Kerstin, Hartl Johannes, Löwe Bernd, Schramm Christoph, Toussaint Anne

机构信息

Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Universitätsklinikum Hamburg-Eppendorf.

I. Medizinische Klinik, Universitätsklinikum Hamburg-Eppendorf.

出版信息

Psychother Psychosom Med Psychol. 2025 Jan;75(1):20-27. doi: 10.1055/a-2434-6837. Epub 2024 Oct 30.

Abstract

Patients with primary biliary cholangitis (PBC) suffer from a variety of physical complaints such as fatigue, itching or joint pain. Since little is known about the experience of symptoms and the corresponding coping strategies in this patient group, a qualitative study was conducted in which 15 patients with PBC were interviewed. The patients reported being burdened by numerous physical complaints, some of which require extensive coping and adaptation processes. By means of thematic analysis, two overarching themes could be generated from the data material: "Accepting limitations and shifting boundaries" describes the patients' challenge of redefining their own stress limits and adapting demands and expectations to their own capabilities. "Maintaining normality and reorienting" describes the tension between the desire to maintain normality and the challenge of integrating the symptoms as perceptible signs of their illness into their own self-image. The results illustrate the central role of physical symptoms in the everyday lives of many patients with PBC, the complexity of the experience of symptoms and the challenges of dealing with these symptoms. They also emphasize the supportive and mediating function of healthcare practitioners in individual symptom management.

摘要

原发性胆汁性胆管炎(PBC)患者会出现各种身体不适症状,如疲劳、瘙痒或关节疼痛。由于对该患者群体的症状体验及相应应对策略了解甚少,因此开展了一项定性研究,对15例PBC患者进行了访谈。患者报告称受到众多身体不适症状的困扰,其中一些症状需要广泛的应对和适应过程。通过主题分析,从数据材料中可以得出两个总体主题:“接受局限并调整界限”描述了患者重新定义自身压力极限以及使需求和期望适应自身能力的挑战。“维持正常状态并重新定位”描述了维持正常状态的愿望与将症状作为疾病的明显迹象融入自我形象的挑战之间的矛盾。研究结果表明身体症状在许多PBC患者日常生活中的核心作用、症状体验的复杂性以及应对这些症状的挑战。它们还强调了医护人员在个体症状管理中的支持和调解作用。

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