多发性硬化症患者的疾病表征:叙事医学初步研究

IF 2.5 Q2 CLINICAL NEUROLOGY Multiple Sclerosis Journal - Experimental, Translational and Clinical Pub Date : 2024-09-24 eCollection Date: 2024-07-01 DOI:10.1177/20552173241271755
T Paolucci, M Reho, C Ciacchella, G Veneziani, I Santoro, G Fiorentino, F Galli, C Lai
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引用次数: 0

摘要

背景:通过了解患者对疾病的表述,可以丰富旨在应对多发性硬化症的个性化干预措施的开发:本研究旨在调查患者的疾病表征与环境因素(即护理者的存在/不存在及类型、参与情况、康复频率及类型)、疲劳、疼痛和神经功能损伤之间的关联:通过自动文本分析程序对 28 名患者的访谈进行分析。经过系统标签程序,确定了四种疾病表征:日常生活、寻找疾病的意义、与人和诊断的关系、应对和身体成长:研究结果表明,疾病关系方面的表征与照顾者的存在有关,而与应对和成长有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程度的疲劳相关,与应对和成长相关的表征以及与疾病关系相关的表征相比,与较高程度的神经损伤相关:探索疾病表征是一个关键步骤,可以帮助医疗专业人员获得综合视角,有助于根据患者的具体需求设计和调整干预措施。
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Illness representation in patients with multiple sclerosis: A preliminary narrative medicine study.

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: daily life, search for meaning of the disease, relationship to people and the diagnosis, coping and physical growth.

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.

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来源期刊
CiteScore
4.70
自引率
0.00%
发文量
54
审稿时长
15 weeks
期刊最新文献
Cannabinoids for spasticity in patients with multiple sclerosis: A systematic review and meta-analysis. Treatment effect modifiers of immunotherapies for relapsing-remitting multiple sclerosis-A systematic review and meta-analysis. Cesarian sections in women with multiple sclerosis: A Canadian prospective pregnancy study. Exploring the relationship between neurologists and older persons with multiple sclerosis through the lens of social support theory. Illness representation in patients with multiple sclerosis: A preliminary narrative medicine study.
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