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    Rights statement: The final, definitive version of this article has been published in the Journal, Chronic Illness, ? (?), 2021, © SAGE Publications Ltd, 2021 by SAGE Publications Ltd at the Social Psychological and Personality Science page: https://journals.sagepub.com/home/SPP on SAGE Journals Online: https://journals.sagepub.com/doi/full/10.1177/17423953211043101

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‘It’s a double whammy’: A qualitative study of illness uncertainty in individuals with Parkinson’s Disease in the context of COVID-19

Research output: Contribution to journalJournal articlepeer-review

E-pub ahead of print
<mark>Journal publication date</mark>15/09/2021
<mark>Journal</mark>Chronic Illness
Publication StatusE-pub ahead of print
Early online date15/09/21
<mark>Original language</mark>English

Abstract

Objectives
The purpose of this study was to explore the experiences of individuals with Parkinson's through the theoretical lens of illness uncertainty during the first UK full lockdown period (March–June 2020) put in place due outbreak of the COVID-19 pandemic.

Methods
Individual semi-structured interviews were carried out via telephone in May 2020 with 10 individuals with Parkinson's (six men and four women) recruited from Parkinson's UK. Interviews were recorded and transcribed verbatim, and thematic analysis was adopted to analyse the resulting data.

Results
Four overarching themes emerged from the interview data: (1) COVID-19 amplifying existing fears and difficulties around the uncertainty of Parkinson's; (2) practical and psychological efforts to manage uncertainty; (3) benefit-finding as a way of acknowledging the positives of lockdown; (4) risk and future management in the context of uncertainty.

Discussion
Participants reported a range of implicit and explicit strategies to cope with the ‘double whammy’ of uncertainty caused by having Parkinson's during a global pandemic. While these were generally successful in maintaining well-being, it is important that such successful accounts are used to help inform novel strategies and interventions targeting individuals who might need additional support.

Bibliographic note

The final, definitive version of this article has been published in the Journal, Chronic Illness, ? (?), 2021, © SAGE Publications Ltd, 2021 by SAGE Publications Ltd at the Social Psychological and Personality Science page: https://journals.sagepub.com/home/SPP on SAGE Journals Online: https://journals.sagepub.com/doi/full/10.1177/17423953211043101