Understanding Caregiver Strain in Parkinsonism—A Mixed Methods Approach

Hand, Annette, Oates, Lloyd L., Gray, William K., Dismore, Lorelle L., Baker, Katherine, Naisby, Jenni and Walker, Richard W. (2022) Understanding Caregiver Strain in Parkinsonism—A Mixed Methods Approach. Journal of Geriatric Psychiatry and Neurology, 35 (3). pp. 363-373. ISSN 0891-9887

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Official URL: https://doi.org/10.1177/0891988721996819


Background: Parkinsonism, including Parkinson’s disease (PD) are progressive neurological conditions. As these condition progress, individuals will need more support with their care needs to maintain independent community-living. Care needs are mainly met by unpaid, informal caregivers, usually close family members or friends. Caregiver strain is thought to lead to the need for care home placement when the caregiver can no longer cope. Objective: To understand predictors of caregiver strain and its influence on care home placement for people with moderate to advanced Parkinsonism. Methods: This is a convergent mixed methods study. Quantitative data, following an adapted stress-appraisal model, were collected on caregiver profile, tasks performed and causes of caregiver strain. Semi-structured, in-depth interviews were conducted with caregivers of people with PD (PwP) who went into a care home during the study period, to develop a deeper understanding of the caregiver role and the factors influencing caregiver strain. Results: Quantitative data were collected from 115 patient caregiver dyads. Interviews were conducted with 10 caregivers. A model to predict caregiver strain was developed and predictors of caregiver strain were identified, such as functional disability and poor caregiver sleep. Conclusion: Our findings further demonstrate the complexity of carer strain. Particular dimensions are identified that need to be addressed within clinical practice to reduce carer strain and support people with Parkinsonism to remain within their own home for as long as possible.

Item Type: Article
Additional Information: Funding information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was part funded by a grant from Parkinson’s UK (Ref: G-1310). Northumbria Healthcare NHS Foundation Trust acknowledges the support of the National Institute of Health Research Clinical Research Network (NIHR CRN).
Uncontrolled Keywords: Parkinson’s disease, caregiver, caregiver strain
Subjects: B700 Nursing
C600 Sports Science
C800 Psychology
Department: Faculties > Health and Life Sciences > Nursing, Midwifery and Health
Faculties > Health and Life Sciences > Sport, Exercise and Rehabilitation
Depositing User: Elena Carlaw
Date Deposited: 19 Mar 2021 12:11
Last Modified: 27 May 2022 15:30
URI: http://nrl.northumbria.ac.uk/id/eprint/45743

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