Managing Uncertainty in Young-Onset Parkinson\u27s Disease

Typically considered a disease of old-age, Parkinson’s disease can affect those younger in life, i.e., before the age of 55, when it is referred to as young-onset Parkinson’s disease (YOPD). Using constructionist grounded theory, this research sought to understand how, and why, individuals with YOPD became informed about their disease over time. A total of 39 individuals, who self-identified as living with YOPD, took part in this study which was organized according to four cycles of data collection. These cycles utilized focus groups, in-depth interviews and a private online discussion board, supplemented by 14 autobiographies written by individuals living with YOPD. As the research progressed, it became apparent the process of becoming informed about YOPD was entangled within larger processes of adjusting to, and building resilience to, uncertainty resulting from the disease; this uncertainty was rooted in one’s identity and in one’s ability to function. Resulting from this uncertainty was a perception of having lost control over one’s body and one’s life. The adjustment process described by individuals was categorized according to an initial level of logical adjustment followed by a second level of emotional adjustment that continued throughout one’s experience with the disease. Health information seeking was one of several resilience strategies used by individuals with YOPD to manage the uncertainty they experienced, in an attempt to restore the control they perceived they had lost. Health information was acquired through extant and elicited sources of information, differing primarily in the degree of interaction each afforded. Early after their diagnoses, individuals sought general information related to the disease, primarily from extant sources. Over time, as one adjusted to the disease, the information sought became more specific to the difficulties experienced by each person, and were acquired primarily through elicited sources. Knowledge accumulated from sources over time was filtered through one’s bodily experience with the disease to make the knowledge more personally relevant, while also influencing subsequent information seeking. The results of this research can help health care professionals provide care to those living with YOPD, and can also help in the design of patient education programs