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多发性硬化症患者的疾病认知:一项初步的叙事医学研究。

Illness representation in patients with multiple sclerosis: A preliminary narrative medicine study.

作者信息

Paolucci T, Reho M, Ciacchella C, Veneziani G, Santoro I, Fiorentino G, Galli F, Lai C

机构信息

Department of Medical, Oral and Biotechnological Sciences (DSMOB), Physical Medicine and Rehabilitation, G. D'Annunzio University of Chieti-Pescara, Chieti, Italy.

Department of Dynamic, Clinical Psychology and Health Studies, Sapienza University of Rome, Rome, Italy.

出版信息

Mult Scler J Exp Transl Clin. 2024 Sep 24;10(3):20552173241271755. doi: 10.1177/20552173241271755. eCollection 2024 Jul-Sep.

Abstract

BACKGROUND

The development of personalized interventions aimed at coping with multiple sclerosis is enriched by the understanding of patients' representations of the illness.

OBJECTIVE

The aim of this study was to investigate the association between patients' illness representations versus contextual factors (i.e. presence/absence and type of caregiver, engagement, frequency and type of rehabilitation), fatigue, pain, and neurological impairment.

METHODS

Interviews of 28 patients were analysed through an automated text analysis procedure. After a systematic labelling procedure four illness representations were identified: .

RESULTS

Findings showed that the representation of the relational aspects of the illness was associated with the caregiver's presence, while the representation related to coping and growth tended to be associated with participation in rehabilitation programs. Moreover, the representation related to daily life was associated with lower levels of fatigue compared to the representation related to coping and growth, and with higher levels of neurological impairment compared to the representations related to coping and growth and the relational aspects of the illness.

CONCLUSION

Exploring illness representations is a key step that can help health professionals to get an integrated perspective that could be useful in designing and calibrating interventions according to specific patient needs.

摘要

背景

对患者疾病表征的理解丰富了旨在应对多发性硬化症的个性化干预措施的发展。

目的

本研究旨在调查患者的疾病表征与背景因素(即照顾者的存在与否及类型、参与度、康复的频率和类型)、疲劳、疼痛和神经功能障碍之间的关联。

方法

通过自动文本分析程序对28名患者的访谈进行分析。经过系统的标注程序,确定了四种疾病表征。

结果

研究结果表明,疾病关系方面的表征与照顾者的存在有关,而与应对和成长相关的表征往往与参与康复计划有关。此外,与应对和成长相关的表征相比,与日常生活相关的表征与较低的疲劳水平相关,与应对和成长以及疾病关系方面的表征相比,与较高的神经功能障碍水平相关。

结论

探索疾病表征是关键一步,有助于健康专业人员获得综合视角,这在根据患者具体需求设计和调整干预措施时可能有用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4464/11425788/5f5f180694f3/10.1177_20552173241271755-fig1.jpg

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