Soilemezi Dia, Siquier Antonia, Andrés Pilar
Department of Psychology, University of Porstmouth, Porstmouth, UK.
Department of Psychology and Research Institute of Health Sciences (IUNICS), University of the Balearic Islands, Palma, Spain.
J Parkinsons Dis. 2025 May;15(3):480-494. doi: 10.1177/1877718X251330995. Epub 2025 Apr 13.
Stigma deeply affects individuals living with Parkinson's disease (PD), increasing the challenges of this frequent progressive neurodegenerative disorder. This systematic review synthesized qualitative studies to explore how stigma is experienced by people living with PD and their caregivers. A systematic search from four databases identified international qualitative literature on different dimensions and impact of stigma in PD. Following abstracts and full papers screening, 22 studies published between 2004 and 2024 were included. Using thematic synthesis approach, the review revealed three primary themes: (1) living with self-stigma, characterized by feelings of vulnerability, shame and efforts to conceal symptoms, (2) living with public stigma, marked by societal exclusion, misconceptions, and stereotyping, particularly regarding visible symptoms and age, and (3) living with structural stigma, involving discrimination in workplaces and inadequate institutional support. These findings provide a comprehensive understanding of stigma's multifaceted impact, offering insights to design effective strategies that foster awareness, challenge misconceptions, and create a more supportive and inclusive environments for individuals living with PD.
耻辱感对帕金森病(PD)患者产生了深刻影响,加剧了这种常见的进行性神经退行性疾病所带来的挑战。本系统综述综合了定性研究,以探讨PD患者及其护理人员对耻辱感的体验。通过对四个数据库进行系统检索,确定了关于PD耻辱感不同维度及影响的国际定性文献。在筛选摘要和全文后,纳入了2004年至2024年间发表的22项研究。采用主题综合法,该综述揭示了三个主要主题:(1)自我耻辱感,其特征为易受伤害感、羞耻感以及隐瞒症状的努力;(2)公众耻辱感,表现为社会排斥、误解和刻板印象,尤其是针对明显症状和年龄方面;(3)结构性耻辱感,涉及工作场所的歧视和机构支持不足。这些发现全面理解了耻辱感的多方面影响,为设计有效的策略提供了见解,这些策略可提高认识、挑战误解,并为PD患者创造更具支持性和包容性的环境。