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. 2025 May;15(3):480-494.
doi: 10.1177/1877718X251330995. Epub 2025 Apr 13.

Exploring stigma in people living with Parkinson's disease and their caregivers: A review of qualitative studies

Dia Soilemezi  1 , Antonia Siquier  2   3 , Pilar Andrés  2   3
Affiliations
Free article

Exploring stigma in people living with Parkinson's disease and their caregivers: A review of qualitative studies

Dia Soilemezi et al. J Parkinsons Dis. 2025 May.
Free article

Abstract

Background: Stigma deeply affects individuals living with Parkinson's disease (PD), increasing the challenges of this frequent progressive neurodegenerative disorder. Objective: This systematic review synthesized qualitative studies to explore how stigma is experienced by people living with PD and their caregivers. Methods: A systematic search from four databases identified international qualitative literature on different dimensions and impact of stigma in PD. Results: 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. Conclusions: 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.

Keywords: Parkinson's disease; discrimination; qualitative; review; stereotype; stigma; thematic synthesis.

Plain language summary

Stigma affects people living with Parkinson's disease (PD) and their families. Studies from different countries have examined how people experience stigma in their everyday life, the impact it has on their lives and what they do about it. This new research looked at existing studies reporting stigma experiences and grouped them together to understand the bigger picture of PD stigma. The researchers did extensive literature searches on different databases to identify and select all the relevant studies that reported stigma experiences. Twenty-two studies were found and analysed with a method called ‘thematic synthesis’, a common method to synthesise qualitative studies. The three main themes were: (1) living with self-stigma: some people feel inferior and vulnerable because of their condition, decide to keep it a secret and avoid meeting family and friends, (2) living with public stigma: many people who do not understand PD, have stereotypes about the condition and the symptoms which are not true and exclude or ignore people with PD and (3) living with structural stigma: people with PD feel vulnerable at work because they are judged for their condition. Our findings are important because they provide evidence that people living with PD experience different types of stigma and they need support to manage it. We need to design interventions to raise awareness of PD and fight stereotypes about PD, its symptoms and treatments.

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Conflict of interest statement

Conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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