The causes and impact of crisis for people with Parkinson’s Disease: a patient and carer perspective
The causes and impact of crisis for people with Parkinson’s Disease: a patient and carer perspective
Background: The reasons for acute hospital admissions among people with Parkinson’s disease are well documented. However, understanding of crises that are managed in the community is comparatively lacking. Most existing literature on the causes of crisis for people with Parkinson’s disease (PwP) uses hospital data and excludes the individual’s own perspective on the crisis trigger and the impact of the crisis on their care needs.
Objective: To identify the causes and impact of crises in both community and hospital settings, from a patient and carer perspective.
Methods: A total of 550 UK-based PwP and carers completed a survey on (a) their own personal experiences of crisis, and (b) their general awareness of potential crisis triggers for PwP.
Results: In addition to well-recognised causes of crisis such as falls, events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised crisis triggers tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better known causes of crisis that more frequently required hospital care. PwP and carer responses indicated a good general knowledge of potential crisis triggers. PwP were more aware of mental health issues and carers were more aware of cognitive impairment and issues with medications.
Conclusion: These findings could improve care of Parkinson’s by increasing understanding of crisis events from the patient and carer perspective, identifying under-recognised crisis triggers, and informing strategies for best recording symptoms from PwP and carers.
Parkinson's disease, activities of daily living, care needs, caregivers, content analysis, crisis, hospital admissions, patient perspective, resource use, surveys and questionnaires
1935-1945
Fearn, Sarah
46b09792-744b-4c5c-9e80-fa7f7089313b
Bartolomeu Pires, Sandra, Martins
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Agarwal, Veena, Ashok
a9136686-fe91-4945-a02f-4d129e387197
Roberts, Helen
5ea688b1-ef7a-4173-9da0-26290e18f253
Spreadbury, John
a268ce9f-941e-465a-9a33-6cdcbb4958d9
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
12 October 2021
Fearn, Sarah
46b09792-744b-4c5c-9e80-fa7f7089313b
Bartolomeu Pires, Sandra, Martins
bac6d261-405a-4a39-9fe2-3f38deeacb22
Agarwal, Veena, Ashok
a9136686-fe91-4945-a02f-4d129e387197
Roberts, Helen
5ea688b1-ef7a-4173-9da0-26290e18f253
Spreadbury, John
a268ce9f-941e-465a-9a33-6cdcbb4958d9
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
Fearn, Sarah, Bartolomeu Pires, Sandra, Martins, Agarwal, Veena, Ashok, Roberts, Helen, Spreadbury, John and Kipps, Christopher
(2021)
The causes and impact of crisis for people with Parkinson’s Disease: a patient and carer perspective.
Journal of Parkinson's Disease, 11 (4), .
(doi:10.3233/JPD-212641).
Abstract
Background: The reasons for acute hospital admissions among people with Parkinson’s disease are well documented. However, understanding of crises that are managed in the community is comparatively lacking. Most existing literature on the causes of crisis for people with Parkinson’s disease (PwP) uses hospital data and excludes the individual’s own perspective on the crisis trigger and the impact of the crisis on their care needs.
Objective: To identify the causes and impact of crises in both community and hospital settings, from a patient and carer perspective.
Methods: A total of 550 UK-based PwP and carers completed a survey on (a) their own personal experiences of crisis, and (b) their general awareness of potential crisis triggers for PwP.
Results: In addition to well-recognised causes of crisis such as falls, events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised crisis triggers tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better known causes of crisis that more frequently required hospital care. PwP and carer responses indicated a good general knowledge of potential crisis triggers. PwP were more aware of mental health issues and carers were more aware of cognitive impairment and issues with medications.
Conclusion: These findings could improve care of Parkinson’s by increasing understanding of crisis events from the patient and carer perspective, identifying under-recognised crisis triggers, and informing strategies for best recording symptoms from PwP and carers.
Text
Causes and impact of crisis for people with Parkinson’s disease: A patient and carer perspective
More information
Accepted/In Press date: 21 June 2021
Published date: 12 October 2021
Additional Information:
Funding Information:
This project has received funding from the Wessex Clinical Network and was supported by National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) Wessex. H.C.R receives support from the National Institute for Health Research (NIHR) Southampton Biomedical Research Centre. Parkinson's UK shared the research with their national members and facilitated contact with their local groups in the Wessex area. Dr Natalie Cox and Megan Liddiard reviewed the coding of the data. The research team thanks all of the participants who gave their time to complete the survey. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
Funding Information:
This project has received funding from the Wessex Clinical Network and was supported by National Institute for Health Research (NIHR) Applied
Publisher Copyright:
© 2021 - IOS Press. All rights reserved.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
Keywords:
Parkinson's disease, activities of daily living, care needs, caregivers, content analysis, crisis, hospital admissions, patient perspective, resource use, surveys and questionnaires
Identifiers
Local EPrints ID: 451727
URI: http://eprints.soton.ac.uk/id/eprint/451727
ISSN: 1877-7171
PURE UUID: 242e1ebb-b59f-4ea4-9aa5-cfd3a3806105
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Date deposited: 22 Oct 2021 16:30
Last modified: 22 Apr 2024 01:52
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Contributors
Author:
Sarah Fearn
Author:
Sandra, Martins Bartolomeu Pires
Author:
Veena, Ashok Agarwal
Author:
John Spreadbury
Author:
Christopher Kipps
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