A study investigating the experience of working for people with Parkinson’s and the factors that influence workplace success

Abstract

Purpose: The experience of working for people with Parkinson’s disease (PD) is known to vary substantially and affects the length of time in employment after diagnosis. This study aims at exploring the experience of working for people with PD and to create a model detailing the factors that influence their workplace success.

Method: A qualitative grounded theoretical approach was used. Seventeen working people with PD were selected for individual interviews which were conducted sequentially. Data were analyzed in an iterative, inductive process of coding to identify common themes and to generate a model that explains the data.

Results: Two core themes that influence workplace success for people with PD were identified. ‘Feeling in control of Parkinson’s’ describes the actions that they make to remain in control. ‘Being able to control Parkinson’s in the workplace’ describes external factors that they believe influence their ability to work successfully.

Conclusions: The theoretical model demonstrates how a variety of factors interplay to influence workplace success for people with PD. PD is often poorly understood but the ability to explore and devise strategies for oneself and the flexibility to work around a fluctuating daily pattern were regularly identified as strategies that facilitated success.

Implications for Rehabilitation

• The experience of working for people with Parkinson’s is variable and is influenced by how in control the person with Parkinson’s feels and the strategies they use to manage challenges.

• There is a need for greater workplace education to enhance employers’ understanding of Parkinson’s to ensure better support for strategies or reasonable adjustments by employers.

• People with Parkinson’s are able to devise strategies to overcome some of their own specific workplace challenges including through technology but often, they prefer not to use disability aids.

• Daily fluctuations in Parkinson’s symptoms are an important factor influencing workplace success.

Keywords:

• Grounded theory
• Parkinson’s disease
• work
• employment
• qualitative
• young-onset Parkinson’s

Disclosure statement

The authors report no declaration of interest. The key researcher for this study completed this project as part of a NiHR funded Masters of Clinical Research Fellowship.