Living with Parkinson’s in England during and beyond COVID-19 restrictions: a longitudinal qualitative study

Abstract

Objectives

Government-enforced lockdown restrictions associated with preventing the spread of the COVID-19 virus had a series of unintended, negative effects. One group of individuals whose physical and mental health was significantly and disproportionately impacted were those with Parkinson’s. However, research has been mainly cross-sectional, with no previous study qualitatively following up participants through both lockdowns and the easing of restrictions. Consequently, this study aimed to provide a detailed understanding of the experience of lockdowns and the easing of restrictions on the physical and mental health of people with Parkinson’s.

Method

Data from semi-structured interviews collected at four time points across an 18-month period (May 2020 – September 2021) from the same participants (six men and four women) were analysed using interpretative phenomenological analysis.

Results

Three themes were derived: (1) Wrestling with a Parkinson’s identity, agency and control during the pandemic; (2) The encroachment and acceleration of a Parkinson’s future; and (3) Recalibrating priorities from COVID-19 to Parkinson’s.

Conclusion

As currently the only published study to provide an in-depth longitudinal analysis with this population, we used a more dynamic theoretical account, Strauss and Corbin’s theory of illness trajectories, to understand the findings and suggest ways of supporting individuals with Parkinson’s in this stage of the pandemic. The scale and breadth of the support needed is a significant challenge for current statutory systems.

Keywords:

• Parkinson’s disease
• qualitative
• COVID-19
• longitudinal
• illness trajectories

Disclosure statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper

Ethical approval

This project received ethics approval from Lancaster University: Faculty of Health and Medicine [FHMREC] 19077). Informed consent was received by all participants.

Additional information

Funding

The authors gratefully acknowledge the funding by the Rapid Response scheme of the United Kingdom Research Initiatives (Economic and Social Research Council) ref: EP/V055968/1. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. The views expressed are those of the authors and not necessarily those of the UKRI.