People with Parkinson’s and Care Partners of PwPs’ Uncertainty Management Through Information Strategies

This thesis explores how people with Parkinson’s (PwP) and care partners of PwP manage the uncertainty surrounding Parkinson’s disease (PD). PD causes both motor and cognitive decline in patients, which may affect each individual differently (Williamson, Simpson, & Murray, 2008). There is no-known cure or cause for PD, meaning it is shrouded in uncertainty from the first symptom to the ongoing management process. This disease also affects care partners because of its variability in symptoms and progression. For this reason, this research, which is part of a larger study, interviewed both care partners of PwP (n= 10) and those diagnosed with PD (n = 14) in order to understand how they managed uncertainty regarding information management strategies. It was found that care partners and PwPs found emotional information seeking through support groups and exercise classes as sources of hope and optimism when navigating PD. These information management strategies were seen as helpful after their negative perception of PD due to their doctor’s bedside manner at the time of diagnosis. This thesis is part of a larger study about message design and reader-response theory with the goal of creating educational materials to help those affected by PD better navigate the complexities associated with long-term care and quality of life