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.

Applying PEOP to Develop an Intervention Framework for Employment in Parkinson’s Disease

“…We believe that the framework meets a specific clinical need for PwPD, as described in our prior work (Foster et al, 2021;Rafferty, Stoff, et al, 2021). OTs may use this framework to support expanding their practice to meet this essential gap in services for PwPD (Honeycutt & Stapleton, 2013;Mann & Croake, 2018).…”

“…The limited literature that quantitatively or qualitatively describes work experiences of PwPD highlights personal (e.g., cognitive and physical changes) and environmental (e.g., social stigma, and physical accessibility) factors that impact employment for PwPD (Banks & Lawrence, 2006; Benharoch & Wiseman, 2004; Gaudet, 2002; Koerts et al, 2016; Mullin et al, 2018; Murphy et al, 2013). Yet, literature on how to address employment challenges is scant (Foster et al, 2021; Rafferty, Stoff, et al, 2021). In a needs assessment of employment resources for PwPD conducted by Rafferty and colleagues in 2021, PwPD and clinicians identified the need for discussion about employment challenges before PwPD were at immediate risk for employment loss and the need for an individualized and flexible approach to employment-related interventions.…”

“…Yet, literature on how to address employment challenges is scant (Foster et al, 2021; Rafferty, Stoff, et al, 2021). In a needs assessment of employment resources for PwPD conducted by Rafferty and colleagues in 2021, PwPD and clinicians identified the need for discussion about employment challenges before PwPD were at immediate risk for employment loss and the need for an individualized and flexible approach to employment-related interventions. Furthermore, in a review of evidence-based practices for PwPD, Foster and colleagues (2021) call for a framework for intervention approaches that follows the stages of PD disease progression.…”

Financial hardship is associated with employment challenges and reduced quality of life in early Parkinson’s disease

“…Counseling options include social workers, certified rehabilitation counselors, and vocational rehabilitation counseling to support job retention or to help an individual prepare for future changes in employment status. Helping people with early PD to plan ahead could reduce financial stress and employment crises such as threat of termination [11] .…”