Assessing the well-being implications of the COVID-19 restrictions on individuals affected by Parkinson's
Lead Research Organisation:
Lancaster University
Department Name: Division of Health Research
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.
Organisations
Publications
Eccles FJR
(2023)
The joint impact of symptom deterioration and social factors on wellbeing for people with Parkinson's during the covid-19 pandemic in the UK.
in Journal of the neurological sciences
Holland C
(2021)
Impacts of COVID-19 lockdowns on frailty and wellbeing in older people and those living with long-term conditions.
in Advances in clinical and experimental medicine : official organ Wroclaw Medical University
Murray C
(2023)
Living with Parkinson's in England during and beyond COVID-19 restrictions: a longitudinal qualitative study
in Aging & Mental Health
Simpson J
(2021)
'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19
in Chronic Illness
Description | The physical and mental health of people with Parkinson's and their family caregivers have been significantly affected by the restrictions introduced as part of the COVID pandemic and the easing of restrictions has not effected a return to previous or expected levels of functioning for many individuals. |
Exploitation Route | The findings are currently being analysed by Parkinson's UK to influence their strategic approach to funding, health care and their own services. |
Sectors | Healthcare |
URL | https://www.parkinsons.org.uk/news/how-have-coronavirus-covid-19-restrictions-impacted-people-affected-parkinsons |
Description | The research has been used to help the leading charity in the UK which supports people with Parkinson's, Parkinson's UK, to: a) lobby for health and social services for people with Parkinson's to be resumed to pre-pandemic levels; b) to demonstrate to people with Parkinson's that their views have been listened to and are being communicated to those responsible for service provision; c) to give a voice to those who support and care for people with Parkinson's. Other broader UK-based neurological charities, such as the Neurological Alliance, have also used the findings and the reports to make the case that people's conditions have worsened during the pandemic and that a simple restoration of services is probably not sufficient to deal with the growing health inequalities experienced. |
First Year Of Impact | 2022 |
Impact Types | Societal,Policy & public services |