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

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.