Понимание стигматизации при множественном склерозе: дискриминация на рабочем месте, социальные проблемы и психологические последствия.
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Bülbül Nazlı Gamze, Tunç Abdulkadir, Bünül Sena Destan, Demir Serkan, Seferoğlu Meral, Sıvacı Ali Özhan, Aksoy Selma, Doğan İpek Güngör, Tekan Ülgen Yalaz, Arslanoğlu Nefise Eda, Öncel Samet, Toğrol Rıfat Erdem, Efendi Hüsnü
Аннотация
Оригинал публикации
Understanding stigma in multiple sclerosis: workplace discrimination, social challenges and psychological impacts.
BACKGROUND: Stigmatization in MS patients is an important problem that affects social interaction, work life and daily life. In this study, we investigated the prevalence, severity and especially the effects of stigmatization on work life in MS patients.
METHODS: A cross-sectional study of 420 people living with MS (PwMS) assessed stigma using the NeuroQoL Stigma Short Form and a direct stigma survey. Demographic, clinical, workplace, and social data were collected through an online survey. Statistical analyses were performed.
RESULTS: Stigma was prevalent, with 77% reporting stigma in direct surveys and 67.6% scoring > 8 on the NeuroQoL Stigma Short Form. Stigma was more severe in patients with progressive MS and higher EDSS scores. The most disturbing symptoms were fatigue (73.3%), imbalance (46.7%) and attention deficit 50.5%). The most prominent complaint affecting work life was fatigue (41.2%). Only 7.3% of the patients had sought psychological support for this issue. 57.4% of patients had disclosed their illness to their employer and 68.1% to their coworkers.
CONCLUSIONS: Stigma in MS is pervasive, linked to clinical severity, workplace challenges, and social withdrawal. Interventions targeting stigma's psychological and social dimensions, along with workplace education and support are essential.