Exploring Stigma in People with Parkinson’s Disease. A Qualitative Approach

Abstract Background Parkinson’s disease (PD) is a neurodegenerative disorder characterised by motor and non-motor symptoms, which can considerably compromise people with PD’s (PwP) quality of life and psychological well-being in part due to ongoing stigma. Here, we sought to explore the role of stigma in the experience of living with PD in Ireland. Methods Twenty-one participants were recruited through convenience and snowball sampling. Data were collected through 30-50 minute semi-structured interviews face-to-face, via videoconference, or telephone. The interview explored PwP’s symptoms, psychosocial experiences, and support needed in the context of stigma. A thematic analysis was performed on interview transcripts. Results PwP do not avoid social situations because of their illness and are generally open to sharing their diagnosis with others. Most can avail of a solid social network and found that this supports them during the process of self-acceptance following their diagnosis. However, most do not feel comfortable sharing their feelings with close ones and would avail of an external emotional outlet, were it to be available. Stigma was experienced in social situations where PwP felt pitied and misjudged. Conclusion This study provides a snapshot of the social perceptions and experiences of people with PD in the context of stigma, and the consequential effects on their sense of well-being, identity and social connectedness. These findings may help to inform the development of health and social policies and help educate the general public on the lived experience of PwP.