BackgroundThe patient experience of Parkinson's disease (PD) is heterogeneous, with limited prognostic tools to predict individual outcomes, leading to significant uncertainty for people with PD. Under-recognition of both psychosocial and biological drivers of fear and uncertainty in Parkinson's disease (PD) by clinicians may further contribute to patient distress.ObjectiveThe objective of the present study is to investigate fear and uncertainty in people with PD.MethodsIn-depth interviews were conducted with twenty people with PD (11 semi-structured, 9 guided/prompted). Thematic analysis organized the fears/uncertainties by topic as well as by contextual factors such as the timing of the fear (e.g., active or anticipatory; at the time of diagnosis or developed subsequent to diagnosis) and the lexicon used to describe it.ResultsParticipants expressed a wide range of fears and uncertainties about their future and quality of life with PD, which shifted with disease progression. Most fears were anticipatory rather than in response to current concerns. Participants reported substantial psychosocial influence from media personalities or family/friends with PD. Most participants reported that they had not disclosed their fears to their healthcare providers.ConclusionsClinicians caring for people with PD should be aware of a range of often-unspoken fears and uncertainties, which may carry a substantial psychosocial burden. Open acknowledgement and normalization by clinicians may help patients feel less isolated in their disease.
Keywords: Parkinson's disease; fear; qualitative; uncertainty.
Fears and uncertainties that many people with Parkinson's disease (PD) experience are not always identified or recognized by their healthcare providers. This study interviewed 20 people with PD to explore these emotions in depth. Interview transcripts were analyzed by a team of researchers trained in qualitative, thematic analysis. Study participants reported a wide, diverse range of fears and uncertainties about PD, which often focused on future possibilities more than their present challenges. Many of these fears were influenced by participants’ exposure to media personalities, friends, or family members with PD. Despite their significant emotional impacts, most participants had not discussed their fears with their healthcare providers. These findings suggest that healthcare providers for people with PD should be aware of the breadth of fears and uncertainties that their patients often experience. By addressing these often-unspoken concerns, clinicians can support the emotional well-being of people living with PD.