Working with Parkinson’s disease: unpacking how support and stigma influence employment options after the onset of a progressive disease
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Parkinson’s disease (PD) is one of the most common neurodegenerative diseases in the United States (Kowal, Dall, Chakrabarti, Storm, & Jain, 2013), affecting approximately 1 million Americans (American Parkinson’s Disease Association, 2020). However, there is limited research on the employment experiences of individuals with Parkinson’s disease (PD) (Koerts, Konig, Tucha, & Tucha, 2016). Informed by the capability approach (Sen, 2009) and social cognitive career theory (Lent & Hackett, 1994), this dissertation study addressed gaps in the extant literature, examining what employment options individuals with Parkinson's disease perceive as feasible after disease onset. This research explored the effects of contextual factors on employment options, including how understanding of workplace accommodations influences employment options, the role of discrimination and stigma in shaping employment options, and the extent to which individuals with Parkinson’s disease are receiving work-related decision support from health care providers. The author conducted individual semi-structured interviews with 23 adults under the age of 65 with Parkinson’s disease. Interviews were audio-recorded and transcribed. The author utilized an integrated approach to analysis, primarily employing a thematic analysis approach, as outlined by Braun and Clarke (2006). Additionally, a more interpretive analysis strategy (the Listening Guide, as outlined by Gilligan, Spencer, Weinberg & Bertsch, 2003) was integrated into the broader thematic analysis in order to deepen analysis of discrimination and stigma. Findings highlight specific facilitators and barriers to sustaining employment after the onset of PD, exploring how individuals with PD identify and gain crucial access to accommodations. This research demonstrates how a participant’s history of access to workplace accommodations influences participants’ perceived employment options, as well as the perceived effects of work on health. Participants’ narratives demonstrate how stigma and discrimination affect employment experiences and outcomes, influencing participants’ outcome expectations regarding current and future employment options. Participants reported that work-related conversations with health care providers were limited, with the data offering several explanations as to why these conversations were limited in nature. This study provides meaningful insights into the employment experiences of adults with Parkinson’s disease, with potential relevance to the experiences of adults with chronic and/or progressive diseases more broadly. These findings have important implications for social work and health care practice and education, disability policy, early intervention strategies after the onset of PD and priorities for future research.
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