Associations: Mirrors for people living with Parkinson’s disease

Parkinson’s disease, with its profound impact on individuals and communities worldwide, calls for a comprehensive understanding of the social dimensions of the illness. This study explores the pivotal role of associations in influencing coping strategies and shaping identity among individuals living with Parkinson’s disease. Through a grounded theory approach, the research examines how participation in associative networks provides a platform for self-expression, mutual support, and engagement, fostering resilience and adaptation. Data were collected via semi-structured interviews with individuals diagnosed with Parkinson’s and facilitators actively involved in Italian Parkinson’s associations from northern, central, and southern regions of the country. The findings underscore the critical role associations play in addressing the collective needs and aspirations of their members while highlighting significant regional differences in activities, strategies, and support systems. Associations promote solidarity and shared understanding through homophily, offering a sense of belonging and mutual aid. They not only provide access to essential social and healthcare resources but also create spaces where individuals can reflect on their past, navigate the present, and envision a future beyond the limitations of their condition. This dynamic interplay of social engagement and identity transformation underscores the indispensable contribution of associations to the broader care ecosystem and their transformative impact on the lives of people with Parkinson’s.