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Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury
Open accessAbstract
Context Measurement and improvement of informal caregiver burden are central aims of policy and intervention. Burden itself is a complex construct, and total burden can differ by patient diagnosis, although how diagnosis affects different aspects of caregiver subjective burden is unclear. Objectives To compare the subjective burden of caregivers across three diagnostic groups using the 22-item Zarit Burden Inventory. Methods We performed a secondary analysis of pooled cross-sectional data from four U.K. studies of informal caregivers of patients with advanced cancer (n = 105), dementia (n = 131), and acquired brain injury (ABI) (n = 215). Zarit Burden Inventory totals, subscales (personal and role strain), and individual mean scores were compared between diagnostic groups using the general linear model, adjusting for caregiver characteristics. Results Caregiver age (mean years [SD]: cancer 66.1 [12.0]; dementia 61.9 [13.4]; and ABI 53.8 [10.9]) differed significantly across diagnostic groups (P < 0.001); 81.9%, 36.6%, and 59.1% of caregivers were spouse/partners, respectively (P < 0.001). Total burden was highest in ABI caregivers and lowest in cancer (mean total score [SD]: cancer 23.3 [13.4]; dementia 27.9 [16.4]; and ABI 39.1 [17.3]) (P < 0.001). Subscale scores showed similar patterns (mean personal and role subscale scores [SD]: cancer 11.8 [6.9], 5.8 [4.8]; dementia 14.4 [8.8], 7.3 [5.7]; and ABI 18.7 [9.1], 11.8 [6.0]) (P < 0.001 for both subscales). Most (17 of 22) individual item scores differed by diagnosis group (P < 0.05), except concepts of duty, responsibility, and perception of financial situation. Conclusion Our data show that total, subscale, and most individual elements of caregiver subjective burden differ between cancer, dementia, and ABI caregivers. This should be considered when designing future intervention strategies to reduce caregiver burden in these groups.
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“It is therefore plausible that the impact of pancreatic cancer on informal caregivers is potentially distinct [18].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [18]
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“In a study from the United Kingdom that included 105 informal caregivers of advanced cancer patients, the mean ZBI-22 score was 23 [26].”
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Metadata
- Authors
- Harding, R., Gao, W., Jackson, D., Pearson, C., Murray, J., & Higginson, I. J.
- Affiliations
- King's College London (GB)
- Corresponding author
- Harding, Richard
- Venue
- Journal of Pain and Symptom Management
- Publisher
- Elsevier BV
- Published
- 2015-10
- Volume
- 50
- Issue
- 4
- Pages
- 445-452
- ISSN
- 0885-3924 (ISSN-L)
- OpenAlex
- W2037901168
- Cited by
- 110
- References
- 48
- Citations by year
- 2026: 7 · 2025: 8 · 2024: 4 · 2023: 11 · 2022: 9 · 2021: 20 · 2020: 10 · 2019: 11 · 2018: 14 · 2017: 9 · 2016: 3 · 2015: 3
- FWCI
- 24.40
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Journal of Pain and Symptom Management (publishedVersion)
- PubMed (publishedVersion)
- Research Portal (King's College London) (submittedVersion, cc-by-nc-nd)
- Funders
- National Health Service
- Department of Health (030/0066)
- Department of Health Policy Research Programme
- Luff Foundation
- Dunhill Medical Trust
- Topics
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
- Keywords
- Zarit Burden Inventory, advanced cancer, dementia, acquired brain injury, personal strain, role strain, spousal caregivers, caregiver characteristics
- MeSH terms
- Aged, Brain Injuries, Cross-Sectional Studies, Dementia, Family, Female, Follow-Up Studies, United Kingdom, Humans, Male, Middle Aged, Neoplasms, Linear Models, Caregivers, Cost of Illness
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