Exploring Stigma Experienced by People with Parkinson's Disease, in Literature and Social Media

Parkinson's disease (PD) is an incurable progressive disorder that affects the nervous system and results in changes in a person's speech, movement, balance, and coordination. Stigma is associated with poorer patient outcomes and affects a person's physical, mental, and emotional health. Stigma Theory defines stigma as four separate and interconnected concepts: public, self, stigma by association, and structural stigma. Purpose: To explore how stigma is experienced by people with PD, how current literature and social media portray stigma for people with PD, and if this portrayal supports Stigma Theory. Research questions: 1) how is stigma represented in the literature and social media? 2) how do people with PD describe the stigma they experience? 3) do findings support stigma theory? A multi-case qualitative study will compare the experiences of people with PD, literature and social media representations of stigma and determine if findings support Stigma Theory. Ethics approval and consent will be obtained for individual Zoom video chats or phone calls with six adults with PD. Interviews will be audio-taped, transcribed, then coded and analyzed individually. Interviews will be compared and examined for patterns and explanations. Current literature findings support how stigma causes embarrassment, anger, and frustration for people with PD and how the motor symptoms and difficulties that arise from PD can lead to increased stigma. Literature findings support Stigma Theory. Interviews will determine how people with PD experience stigma and how social media portrays people with PD for evidence of stigma, and if findings support Stigma Theory.