Social experiences of people living with Parkinson's disease in Ireland: A qualitative study

Parkinson's disease (PD) is a neurodegenerative disorder characterized by motor and non-motor symptoms, compromising people with PD's (PwP) quality of life and psychological well-being, which may be compounded by stigma. We sought to explore the social experiences of PwP in Ireland, including the role of stigma.

Twenty-one people with PD were recruited through purposeful and snowball sampling. Data were collected through 30-50 min face-to-face or virtual semi-structured interviews. The interview explored PwP's symptoms, psychosocial experiences, and support needed in the context of stigma. A thematic analysis was performed on transcripts.

Participants reported diverse social experiences, however stigma was frequently experienced in social situations where PwP felt pitied, misjudged, or closely observed by others. While most were generally open about their diagnosis and did not routinely avoid social settings or encounters, some expressed reluctance in unfamiliar contexts, often due to concerns about visible symptoms, such as poor dexterity when eating, a quieter voice making conversation difficult, or fear of falling. Most reported having a strong and reliable social network offering emotional and practical support. However, many felt uncomfortable sharing their inner emotional responses to Parkinson's with close others and would welcome access to informal or professional outlets for emotional expression.

This study provides a snapshot of the social experiences of people with PD, including the role of stigma, and its effects on well-being, identity, and social connectedness. The findings highlight the importance of greater public education to reduce stigma and promote understanding of PD symptoms. They also underscore the value of peer support groups in fostering emotional connection and resilience. In addition, many participants expressed a need for external emotional support, pointing to a potential role for psychotherapeutic interventions in helping PwP process their experiences and maintain psychological well-being.