'Breaking the stigma': a qualitative study on how public perceptions affect individuals with Parkinson's disease - a...

Parkinson's disease (PD) is a chronic neurological disorder that affects around 24,000 people in Ireland. Despite being relatively common, awareness and understanding of the condition remain limited, often leading to misconceptions, stigma, and social isolation for those diagnosed. This study aimed to investigate how these challenges impact individuals with PD, drawing on the experiences and insights of Parkinson's disease nurse specialists (PDNS). By exploring the perspectives of PDNS, this research seeks to highlight the effects of stigma and public misunderstanding on the quality of life of those living with PD.

Semi-structured interviews and focus groups were conducted with 10 PDNs working in Northern Ireland and the Republic of Ireland between May and June 2024. The study employed an interpretivist approach and reflexive thematic analysis following Braun and Clarke's six-step framework. Ethical approval was obtained prior to data collection.

Five main themes were developed from the analysis: (1) Public knowledge of PD and Stigma, (2) Lived Experiences, (3) Support Systems and Services, (4) Increasing awareness of Parkinson's Disease, and (5) The Role of the PD Nurse. PDNS noted that limited public awareness of PD leads to misconceptions and stigma, negatively impacting the quality of life for those affected. PDNS also emphasised that raising awareness through education, campaigns, and their own role can help improve outcomes for individuals living with PD.

The study highlights the complex relationship between public understanding, perceptions, and the quality of life for individuals with PD, as viewed through the lens of Parkinson's disease nurse specialists. Findings suggest that stigma and a lack of awareness contribute to emotional and social challenges, while strong support networks and public education can significantly enhance the experiences of those living with PD. The results underscore the need for widespread education, not only among the public but also within the healthcare sector, to better support individuals with PD in Ireland. Future research and targeted interventions should focus on increasing societal awareness to improve the lived experiences and well-being of those affected by the condition.