Caregivers’ burden of care during emergency department care transitions among older adults: A mixed methods cohort study
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Abstract
Abstract Objective Improving care transitions for older adults can reduce emergency department (ED) revisits, and the strain placed upon caregivers. We analyzed whether caregivers felt a change in burden following a care transition, and what may be improved to reduce it. Methods This mixed-methods observational study nested within LEARNING WISDOM included caregivers of older patients who experienced an ED care transition. Burden was collected with the brief Zarit Burden Interview (ZBI-12), and caregivers commented on the care transition. A qualitative coding scheme of patient care transitions was created to reflect themes important to caregivers. Comments were randomly analyzed until saturation and themes were extracted from the data. We followed both the SRQR and STROBE checklists. Results Comments from 581 caregivers (mean age (SD) 64.5 (12.3), 68% women) caring for patients (mean age (SD) 77.2 (7.54), 48% women) were analyzed. Caregivers overwhelmingly reported dissatisfaction and unmet service expectations, particularly with home care and domestic help. Communication and follow-up from the ED emerged as an area for improvement. Caregivers who reported an increased level of burden following a care recipient’s care transition had significantly higher ZBI scores than caregivers who self-reported stable burden levels, but not improved burden levels. Conclusion Caregivers with increasing, stable, and improved levels of subjective burden all reported areas for improvement in the care transition process. Themes centering on the capacity to live at home most frequently and may represent serious challenges to caregivers. Addressing these challenges could improve both caregiver burden and care transitions. Key points We analyzed caregivers’ thoughts about emergency department care transitions using both qualitative and quantitative tools. Caregivers reported dissatisfaction and unmet service expectations with home care, domestic help, and coordinating follow-ups. Variance in self-reported subjective caregiver burden corresponds to Zarit Burden Interview (ZBI) scores.
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Few earlier studies have examined how feelings of guilt, failure, and cultural stigma interact with dementia transition pathways.
“While some earlier studies have explored caregiver burden (Germain et al., 2024; Groenvynck et al., 2022), few have examined how feelings of guilt, failure, and cultural stigma interact with dementia transition pathways.”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Germain et al., 2024
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- Authors
- Germain, N., Jémus-Gonzalez, E., Couture, V., Côté, É., Morin, M., Toulouse-Fournier, A., Bert, L., Giguère, R., Sinha, S., Sourial, N., Chartier, L. B., Witteman, H. O., Légaré, F., Samb, R., Turcotte, S., Chandavong, S., Abrougui, L., Robitaille, J., Archambault, P. M., & on behalf of the Network of Canadian Emergency Researchers
- Affiliations
- Centre intégré de santé et de services sociaux de Chaudière-Appalaches (CA)
- Université Laval (CA)
- University Health Network (CA)
- Université de Montréal (CA)
- Canadian Association of Emergency Physicians (CA)
- Corresponding author
- Germain, Nathalie
- ORCID
- Venue
- BMC Geriatrics
- Published
- 2024-09-28
- Volume
- 24
- Issue
- 1
- Pages
- 788-788
- ISSN
- 1471-2318 (ISSN-L)
- PMC
- PMC11438161
- OpenAlex
- W4402949419
- Semantic Scholar
- 2405b9bcf44b698b6650f9ef017a03ee01849e79
- Cited by
- 15
- References
- 63
- Citations by year
- 2026: 5 · 2025: 7 · 2024: 3
- FWCI
- 6.49
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- BMC Geriatrics (publishedVersion, cc-by)
- medRxiv (acceptedVersion)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Master’s Award: Canada Graduate Scholarships Award (202112)
- Canadian Institutes for Health Research (201603)
- Fonds de recherche du Québec – Santé (283211)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
- Health Sciences › Medicine › Emergency Medicine › Emergency and Acute Care Studies
- Keywords
- caregiver burden, care transitions, emergency department, older adults, Zarit Burden Interview, home care, home help services, communication, follow-up care, living at home
- MeSH terms
- Caregiver Burden, Aged, Aged, 80 and over, Emergency Service, Hospital, Female, Humans, Male, Middle Aged, Patient Transfer, Cohort Studies, Caregivers
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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