Research with Parkinson’s Disease CarePartners


Living with someone who has Parkinson’s Disease

Often the complex and progressive needs of individuals living with Parkinson’s Disease (PD) leads to role strain, burden, and a diminished quality of life for both the individual affected and the care partner. As symptoms progress, care partners need support systems and resources to manage and provide the necessary care. Through Photovoice, a qualitative research methodology, participants are empowered to reflect on and narrate the daily realities of caring for someone with PD and how they affect their everyday life. The lived experiences are exhibited through photographs and told through stories to increase awareness, better understand the needs, and empower the care partner. The goal of this research is to use the results to create change to improve delivery of care and services to those who are living with PD. Seven major themes were identified through the data analysis.  The themes include losses and grieving, adapting to changes, safety, sleep disturbance, time for self and self-care, care partner priorities, and anticipating the future. The participants shared personal reflections and what they learned through the process, identifying beneficial support systems, as well as resources that are needed to more effectively manage in a care partner role.