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减少多发性硬化症的耻辱感、增强心理健康和身份认同:当前实践与未来方向的叙述性综述

Reducing Stigma, Enhancing Psychological Well-Being and Identity in Multiple Sclerosis: A Narrative Review of Current Practices and Future Directions.

作者信息

Montesano Cristina, Liberali Giulia, Azzali Gianluca, Buzzachera Cosme, Angilletta Sonia, Alessandria Marco, Guidetti Laura, De Giorgio Andrea

机构信息

Department of Theoretical and Applied Sciences, eCampus University, 22060 Novedrate, Italy.

Department of Public Health, Experimental and Forensic Medicine, University of Pavia, 27100 Pavia, Italy.

出版信息

Healthcare (Basel). 2025 May 29;13(11):1291. doi: 10.3390/healthcare13111291.

Abstract

BACKGROUND

Stigma is a pervasive, though understudied, psychosocial factor affecting people with multiple sclerosis. This review synthesizes the literature on the impact of perceived, enacted, and internalized stigma on psychological health and illness identity in PwMS.

METHODS

A comprehensive narrative review approach was adopted, integrating findings from peer-reviewed quantitative and qualitative studies. Databases including PubMed, PsycINFO, and Scopus were searched using combinations of terms such as "multiple sclerosis", "stigma", "internalized stigma", "mental health", and "illness identity". Studies were included if they reported on stigma-related outcomes in PwMS, discussed psychological or identity variables, or examined interventions aimed at reducing stigma or enhancing adaptive identity. The analysis focused on thematic synthesis, identifying recurrent findings, mediating mechanisms, and clinical implications.

RESULTS

Stigma in MS is consistently linked to higher depression, anxiety, and lower quality of life. Internalized stigma disrupts illness identity, often fostering engulfment and rejection of the self. Psychological mediators-such as cognitive fusion, diminished self-compassion, and weakened sense of coherence-amplify these outcomes. Particularly vulnerable are individuals with progressive disease, severe disability, minority status, or limited social support. A recursive loop emerges: stigma triggers psychological distress, which increases stigma awareness and social withdrawal. In addition to traditional psychological interventions, several emerging approaches have shown promise in reducing internalized stigma and fostering adaptive identity integration.

CONCLUSIONS

Stigma is a central factor in emotional suffering and identity fragmentation in PwMS. Integrative, narrative-informed, and culturally sensitive interventions are essential to reduce stigma and foster resilience. Future research should prioritize longitudinal, mixed-method approaches to develop effective, scalable solutions.

摘要

背景

耻辱感是一种普遍存在但研究不足的社会心理因素,影响着多发性硬化症患者。本综述综合了关于感知到的、表现出的和内化的耻辱感对多发性硬化症患者心理健康和疾病认同影响的文献。

方法

采用全面的叙述性综述方法,整合同行评审的定量和定性研究结果。使用“多发性硬化症”、“耻辱感”、“内化耻辱感”、“心理健康”和“疾病认同”等术语组合在包括PubMed、PsycINFO和Scopus在内的数据库中进行检索。如果研究报告了多发性硬化症患者与耻辱感相关的结果、讨论了心理或认同变量,或研究了旨在减少耻辱感或增强适应性认同的干预措施,则纳入研究。分析重点是主题综合,确定反复出现的结果、中介机制和临床意义。

结果

多发性硬化症中的耻辱感一直与更高的抑郁、焦虑和更低的生活质量相关。内化耻辱感会破坏疾病认同,常常导致自我吞噬和自我排斥。认知融合、自我同情减少和连贯感减弱等心理中介因素会放大这些结果。患有进行性疾病、严重残疾、少数群体身份或社会支持有限的个体尤其脆弱。会出现一个递归循环:耻辱感引发心理困扰,这会增加耻辱感意识和社交退缩。除了传统的心理干预措施外, 几种新兴方法在减少内化耻辱感和促进适应性认同整合方面已显示出前景。

结论

耻辱感是多发性硬化症患者情感痛苦和身份认同破碎的核心因素。综合的、基于叙述的和具有文化敏感性的干预措施对于减少耻辱感和培养复原力至关重要。未来的研究应优先采用纵向、混合方法来开发有效、可扩展的解决方案。

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