Title: Assessing the well-being implications of the COVID-19 restrictions on individuals affected by Parkinson's
Funder: Economic and Social Research Council

Abstract: Individuals affected by Parkinson's have been significantly disadvantaged by the COVID-19 pandemic. In particular, the consequent social restrictions have removed many existing supports which individuals have considered vital for their well-being. While the investigators, with Parkinson's UK, a leading UK charity, have collected some provisional data on the social effects of the pandemic on well-being, these effects are not static and neither are their impacts on well-being. Consequently this proposed project will use these data already collected as a baseline for two of the three studies within this application: one is a quantitative survey of both individuals with Parkinson's and their carers and the second is a qualitative study on the in-depth experiences of individuals with Parkinson's. For these studies further data will be collected to get a longer-term picture of the same individuals' well-being in the context of the widespread social changes. A number of sub-objectives are to: 1) comprehensively analyse the first dataset (T1 ) in terms of predictors, moderators and mediators of well-being; 2) re-administer the questionnaire (T2) and match responses on a within subject basis; 3) analyse the repeated measures data for changes and predictors of such changes; 4) analyse the existing and planned qualitative interviews (T1, T2, T3) with people with Parkinson's and follow these up with a further interview (T4) to produce a more longitudinal account of the experience; 5) conduct semi-structured interviews with carers (T1) to develop a more detailed understanding of their experiences and follow this up (T2); 6) use the findings from the qualitative and quantitative data to understand the mechanisms which might influence the relationship from social restrictions to well-being and use this understanding to produce further recommendations on how best to support individuals.

Lay abstract: Individuals affected by Parkinson's have been significantly disadvantaged by the COVID-19 pandemic. In particular, the consequent social restrictions have removed many existing supports which individuals have considered vital for their well-being. While we, with Parkinson's UK, a leading UK charity, have collected some provisional data on the social effects of the pandemic on well-being, these effects are not static and neither are their impacts on well-being. Consequently this proposed project will use these data already collected as a baseline for two of the three studies within this application: one is a quantitative survey of both individuals with Parkinson's and their carers and the second is a qualitative study on the in-depth experiences of individuals with Parkinson's. For these studies further data will be collected to get a longer-term picture of the same individuals' well-being in the context of the widespread social changes. The quantitative survey data (two administrations in total) will be subject to further statistical analysis and identification of the predictors of change in well-being. The qualitative data (four administrations in total) will be analysed using interpretative phenomenological analysis. A further third study, an in-depth qualitative study, is also planned; this will focus on the experiences of carers/partners and will also be repeated and analysed longitudinally (two administrations in total). The results will be used to help inform responses from Parkinson's UK to provide appropriate support for members, to inform other third sector organisations (e.g., professional organisations) and health and social care policy-makers and to provide theoretical insights.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL;INFECTION