Experiences of Informal Carers for People with Parkinson's During UK Lockdowns and after Lockdown Ended, 2021-2022

DOI

When COVID-19 emerged, lockdowns were implemented to restrict the rate of transmission. Early findings have shown the extent this action had on the wellbeing of the general population. However, it was expected the impact was more pronounced on individuals living with chronic illness, or those supporting them. This study aimed to longitudinally understand the effects of lockdown on carers of people living with Parkinson’s, and how their experiences evolved after lockdown ended. Nine participants (3 male, 6 female, aged 64-79) were recruited through Parkinson’s UK and a university Parkinson’s Research Database. Participants were interviewed via telephone on two occasions: the first occasion participants discussed their experiences of lockdowns (from March 2020 to June 2021) in relation to supporting their spouse as well as their own challenges. In the second interview (completed five months after the first round of interviews) participants reflected on their experiences of life post-lockdown and the effects lockdown had on their reintegration into society. Using interpretative phenomenological analysis, four themes emerged from participant interviews: (i) Lockdown-induced revolution and evolution of relationship dynamic with spouse; (ii) Fighting to be seen, heard, and understood in healthcare encounters; (iii) Making sense of, and adapting to, risk in a time of COVID-19; and (iv) Isolated and needing support during and after lockdown. Themes are illustrated with data excerpts from both data collection points. Findings show that a perceived sense of control and access to Parkinson’s support were central factors that shaped both participants’ experiences of managing during lockdown and their beliefs surrounding their relationship dynamic with their spouse post-lockdown .When COVID-19 emerged, lockdowns were implemented to restrict the rate of transmission. Early findings have shown the extent this action had on the wellbeing of the general population. However, it was expected the impact was more pronounced on individuals living with chronic illness, or those supporting them. This study aimed to longitudinally understand the effects of lockdown on carers of people living with Parkinson’s, and how their experiences evolved after lockdown ended. Nine participants (3 male, 6 female, aged 64-79) were recruited through Parkinson’s UK and a university Parkinson’s Research Database. Participants were interviewed via telephone on two occasions: the first occasion participants discussed their experiences of lockdowns (from March 2020 to June 2021) in relation to supporting their spouse as well as their own challenges. In the second interview (completed five months after the first round of interviews) participants reflected on their experiences of life post-lockdown and the effects lockdown had on their reintegration into society. Using interpretative phenomenological analysis, four themes emerged from participant interviews: (i) Lockdown-induced revolution and evolution of relationship dynamic with spouse; (ii) Fighting to be seen, heard, and understood in healthcare encounters; (iii) Making sense of, and adapting to, risk in a time of COVID-19; and (iv) Isolated and needing support during and after lockdown. Themes are illustrated with data excerpts from both data collection points. Findings show that a perceived sense of control and access to Parkinson’s support were central factors that shaped both participants’ experiences of managing during lockdown and their beliefs surrounding their relationship dynamic with their spouse post-lockdown .

Participants were recruited through the Parkinson’s UK research network and a participation database at the researchers’ host institution. Recruitment took place over a four-month period and interviews were completed within one month of participant contact. Ten individuals initially showed an interest in taking part in the study, but one was excluded as they provided informal care to their son, who lived with Parkinson’s, as opposed to a spouse. Therefore, nine participants (3 male, 6 female, aged 53-79) took part in the study. All participants were white British, and did not receive additional paid care for their spouse prior to, or during, lockdown. Furthermore, all participants lived in England. All interviews took place over the telephone. Interviews were transcribed verbatim by a third party.

Identifier
DOI https://doi.org/10.5255/UKDA-SN-855990
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=5d16627ea140c1977a12f53078a986c61e492aab65b4b5f8f0336180a82be695
Provenance
Creator Simpson, J, Lancaster University; Eccles, F, Lancaster University; Murray, C, Lancaster University; Garner, I, Lancaster University
Publisher UK Data Service
Publication Year 2022
Funding Reference UK Research and Innovation
Rights J Simpson, Lancaster University; The Data Collection is available for download to users registered with the UK Data Service. Commercial Use of data is not permitted.
OpenAccess true
Representation
Language English
Resource Type Text
Discipline Psychology; Social and Behavioural Sciences
Spatial Coverage UK; United Kingdom