“I Got Laughed at for the Shuffle Noise I Make”: Parkinson’s Disease and Stigma

Background and Purpose: People with Parkinson’s disease (PD) are at risk for stigma. The stigma theory suggests four stigma types: public stigma, self-stigma, stigma by association, and structural stigma. The purposes of this study were to understand how people with PD and caregivers perceived and experienced stigma, review the literature and scan social media for evidence of stigma and PD, and examine the interrelationships between stigma types. Methods: This was a multicase, qualitative, descriptive research study. Cases included interviews with people with PD and caregivers, a literature review, and a scan of social media posts for evidence of stigma. Literature and social media were searched; seven people with PD and five caregivers completed the interviews. The stigma theory guided the analysis. Methods to ensure trustworthiness were employed. Results: Public stigma, self-stigma, stigma by association, and structural stigma were evident in the literature and described by caregivers. Public stigma, self-stigma, and structural stigma were described by people with PD. Public stigma was represented in social media posts. Interrelationships between public and self-stigma, public stigma and stigma by association, and self-stigma and structural stigma were identified. Implications for Practice: All stigma types were experienced and negatively affected people with PD and caregivers. Lack of knowledge and awareness caused stigma and should be addressed on multiple levels. Stigma experienced by people with PD was a global phenomenon; therefore, nurses internationally must be aware of their perceptions of and behavior toward people with PD. Engaging the public with people with PD will demystify PD and reduce stigma. Greater understanding of structural stigma and diverse populations’ and public perceptions is needed.