Employment Resources for People with Parkinson’s Disease: A Resource Review and Needs Assessment

Abstract

Purpose People with Parkinson’s disease (PwP) exit the workforce on average 5 years earlier than people without Parkinson’s due to motor, cognitive, communicative, and affective symptoms. Decreased employment results in significant individual and societal costs. The objectives of this study were to identify strengths and weaknesses of employment resources and assess the needs of consumer and clinical stakeholders to improve job retention. Methods The study used a qualitative content analysis and Quasi Needs Assessment Framework. Sixteen PwP and 10 clinician stakeholders participated in two rounds of stakeholder discussion panels. Main outcomes included (1) the resources identified through the online content search and themes derived from those resources, and (2) the information gained from discussion panels and themes derived from their conversations. Results Literature review and online searches yielded 59 resources (30 consumer-focused documents, 17 peer-reviewed articles, and 12 documents supplied by key informants who are experts in Parkinson’s disease and/or employment). Themes frequently found in the consumer-focused content but not the peer-reviewed literature included diagnosis disclosure decision-making, the benefits of retiring compared to working, and workplace accommodations. Stakeholders identified three key needs with regard to employment-related support for PwP: (1) knowledge about employment support options; (2) a clinician to start the discussion about employment challenges; and (3) an individualized and flexible approach to employment-related interventions. Conclusions Many people with Parkinson’s experience unmet employment-related resource and process needs. An individually-tailored interdisciplinary intervention care path could facilitate decisions regarding disclosure and accommodations.

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Data availability

The data are available online at https://www.icpsr.umich.edu [35].

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Acknowledgements

Research reported in this publication was supported by the Rehabilitation Research and Training Center on Employment for People with Physical Disabilities (RRTC), funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) (Project Grant No. 90RTEM000101). We would also like to thank the key stakeholders who provided insight into the needs of people with Parkinson’s, as well as our advisory committee for helping to guide the direction of the project.

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Rafferty, M., Stoff, L., Palmentera, P. et al. Employment Resources for People with Parkinson’s Disease: A Resource Review and Needs Assessment. J Occup Rehabil (2020). https://doi.org/10.1007/s10926-020-09915-w

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Keywords

  • Parkinson disease
  • Employment
  • Rehabilitation
  • Disclosure