Caregivers’ burden of care during emergency department care transitions among older adults: a mixed methods cohort study

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 also 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 patient’s care transition had significantly higher ZBI scores than caregivers who self-reported stable 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 and inadequate communication were most frequently mentioned and may represent serious challenges to caregivers. Addressing these challenges could improve both caregiver burden and ED care transitions.

Full text

Germainetal. BMC Geriatrics (2024) 24:788
https://doi.org/10.1186/s12877-024-05388-1
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BMC Geriatrics
Caregivers’ burden ofcare duringemergency
department care transitions amongolder
adults: amixed methods cohort study
Nathalie Germain1,2,3*, Estephanie Jémus‑Gonzalez2, Vanessa Couture1, Émilie Côté1, Michèle Morin1,2,
Annie Toulouse‑Fournier1,3, Laetitia Bert1,3, Raphaëlle Giguère1,4, Samir Sinha5,6,7, Nadia Sourial8,
Lucas B. Chartier9, Holly O. Witteman2,3, France Légaré2,3,10,11, Rawane Samb1, Stéphane Turcotte1,
Sam Chandavong1,4, Lyna Abrougui1,4, Joanie Robitaille1, Patrick M. Archambault1,2,3,10,12 and on behalf of the
Network of Canadian Emergency Researchers12
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 also commented on the care transition. A qualitative coding scheme of patient care transi‑
tions 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 patient’s care transition
had significantly higher ZBI scores than caregivers who self‑reported stable 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 and inadequate
communication were most frequently mentioned and may represent serious challenges to caregivers. Addressing
these challenges could improve both caregiver burden and ED care transitions.
Key points
1. We analyzed caregivers’ thoughts about emergency department care transitions using both qualitative and quanti‑
tative tools.
*Correspondence:
Nathalie Germain
nathalie.germain.5@ulaval.ca
Full list of author information is available at the end of the article
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Germainetal. BMC Geriatrics (2024) 24:788
2. Caregivers reported dissatisfaction and unmet service expectations with home care, domestic help, and coordinat‑
ing follow‑ups.
3. Variance in self‑reported subjective caregiver burden corresponds to Zarit Burden Interview (ZBI) scores.
Keywords Older adult patients, Caregiving, Emergency care, Care transitions, Caregiver perceptions
Background
Populations around the world are undergoing a signifi-
cant demographic shift, marked by the steady growth
of older adults as a segment of society, and the shrink-
ing of the available workforce of those who care for older
people [1]. Within this context, informal caregivers are
being increasingly tasked to fill in this gap [2]. Most care
is now handled by caregivers, from activities of daily liv-
ing to minor medical procedures [3]. Caregivers help
older adults adhere to treatment plans and medication
schedules [4], remain in their communities [5], and avoid
premature long-term care [6], while also playing a criti-
cal role in the passage of patients between levels of health
care and across care settings, commonly known as care
transitions.
One such care transition that frequently affects older
patients and their caregivers occurs when a patient
receives medical attention at the emergency department
(ED) and is then discharged home. An ED visit by a com-
munity-dwelling older adult often signals a significant
shift in their health status and can signal the beginning of
a decline in their independence [7]. Caregiving during an
episode requiring emergency care may present additional
challenges and can exact a toll on caregivers both physi-
cally and emotionally. is confluence of challenges is
commonly referred to as caregiver burden [8, 9]. Burden
can arise from the intensity and duration of caregiving
responsibilities, a lack of support or coping mechanisms,
and the condition of the patient [10]. High levels of car-
egiver burden may predispose caregivers to burnout,
thereby impairing their capacity to provide effective care
[11]. e health of patients and their caregivers may dete-
riorate if their caregiver is overwhelmed or incapacitated,
resulting in poor outpatient clinical outcomes and an
increase in avoidable ED revisits [12, 13].
For emergency clinicians, addressing caregiver bur-
den often extends beyond what is possible during a brief
assessment and initial treatment in the ED. Caregivers
insituations involving ED care for patients and experi-
encing a discharge back home from the ED have previ-
ously reported that discharge plans are often drawn by
healthcare providers that depend on the caregiver—with-
out consulting them as to the feasibility of the plan [14,
15]. Patients may also decline professional home care
services like bathing or administering medications, pre-
ferring having their caregiver perform these tasks. is
may be to the detriment of the caregiver, who may not be
comfortable taking on that role [14, 15].
Questionnaires like the Zarit Burden Interview (ZBI)
exist to screen for caregivers experiencing caregiver bur-
den. About 40% of caregivers experience a high level of
caregiver burden when older patients seek acute medical
care at the ED [16]. Little is still known about how the
experience of having a patient seek acute care at the ED
may worsen or improve an existing level of caregiver bur-
den, or what can be done to improve it following an ED
care transition. e purpose of this concurrent mixed
methods [17] descriptive study is to analyze caregiver
burden from several angles: quantitatively using the ZBI,
ordinally by identifying a level of change following an ED
visit, andqualitatively by identifying sources of caregiver
burden. We also broach potential policy and practice
changes necessary to alleviate the sources of caregiver
burden.
Method
Study design andcontext
is study was nested within the longitudinal cohort
study of an integrated health research project within
the Centre intégré de santé et de services sociaux de
Chaudière-Appalaches (CISSS-CA): LEARNING WIS-
DOM (Supporting the Creation of a LEARNing INte-
Grated Health System to Mobilize Context-adapted
Knowledge with a Wiki Platform to Improve the Transi-
tions of Frail Seniors From Hospitals and Emergency
Departments to the cOMmunity) [18]. e LEARNING
WISDOM cohort included older adults and their car-
egivers who underwent a transition of care following a
visit to one of four EDs in the CISSS-CA between Janu-
ary 2019 and December 2021. e CISSS-CA is an inte-
grated health organization consisting of four acute care
hospitals: the Hôtel-Dieu de Lévis (HDL), Hôpital de
Saint-Georges (HSG), Hôpital de Montmagny (HDM),
and Hôpital de etford Mines (HDM).HDL is a univer-
sity teaching hospital receiving more than 78,000 annual
ED visits while the other three rural sites each receive
more than 35,000 visits.
e protocol for this study was approved by the CISSS-
CA Ethics Review Committee (project #2018–462,
2018–007). We adhered to the Standards for Report-
ing Qualitative Research (SRQR) [19] guidelines for the
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Germainetal. BMC Geriatrics (2024) 24:788
assessment of qualitative outcomes and employed e
Strengthening the Reporting of Observational Studies
in Epidemiology (STROBE) Statement [20] to report the
quantitative outcomes.
Participants
LEARNING WISDOM [18] included consenting patients
aged 65years or older, who had been discharged back to
the community from the ED observation unit. Patients
only seen in the ambulatory care section of the ED,
admitted to hospital, transferred to another hospital, or
transferred to a long-term care center were excluded.
Patients and their caregivers had to understand and
speak French. For the full duration of the study recruit-
ment period, at each participating hospital, a list of eligi-
ble discharged patients was generated each day. Patient
phone numbers were selected using a computer-gener-
ated daily randomized list and patients were contacted to
participate. No additional eligibility criteria were added
for this specific study.
Data collection
Using a deductive approach with an a-priori coding
scheme developed in a previous study of patient com-
ments [21], we designed this mixed-methods descriptive
study to analyze data collected directly from the caregiv-
ers of older patients having experienced a care transition.
As part of a continuous quality improvement project led
by the CISSS-CA, patients were contacted by telephone
between 24h to 7days after ED discharge. Patients were
then subsequently invited to participate in a research
project in the following days. We used the Nova Scotia
Criteria to establish informed consent among patients
[21, 22]. Patients were then asked if they consented to
have their caregivers contacted by the research team.
Demographic characteristics for patients and caregivers
were collected using a structured interview, while some
patient characteristics (e.g., comorbidities) were collected
with chart review.
Informed consent was then also obtained for all con-
tacted caregivers, who were then administered the Zarit
Burden Interview (ZBI). e ZBI is the most widely used
instrument measuring caregiver burden [23]. e reli-
ability of scores on the ZBI measured by internal consist-
ency (Cronbach’s alpha) is high, between 0.84–0.93 [24].
We used a short French Canadian version of the ZBI [9]
consisting of 12 items with two constructs: role strain
(items 1–9) and personal strain (10–12). Each question
is scored by frequency in a five-point Likert scale (0 to
4): 0 for never, 1 for rarely, 2 for sometimes, 3 for quite
often, and 4 for all the time. e scores are then summed
into an overall indication of burden (range 0–48). For
caregivers of patients with a major neurocognitive dis-
order, < 3 is categorized as low burden, 3–8 as moderate,
9–18 as high, and > 18 as severe [9].
Caregivers also answered two open-ended questions
in as much or as little detail as they wished. Translated
from the original French, the first one (Question A) was:
“In your opinion, has there been a change in the bur-
den of care following [the patient’s] departure from the
emergency department?”. e second (Question B) was:
“In your opinion, what could be improved to reduce the
burden of care for [the patient]?”. Research profession-
als recorded critical elements of each patient’s response
with important verbatim excerpts with textin a REDCap
(Research Electronic Data Capture) [25, 26] database.
ese professionals (research nurses, and two PhD psy-
chology students) were trained by the research team and
authorized by the Director of Nursing and the Profes-
sional Services Director to perform data collection.
Responses to Question A were classified according
to four ordinal categories: burden increased, burden
decreased, burden unchanged, burden improved, and
no comment. Inter-rater reliability of the coding of these
categories was calculated with Cohen’s Kappa [27].
We used a concurrent mixed deductive approach for
content analysis, in which we sought to qualify and quan-
tify the themes present in responses to Question B [28].
We first used a hypothetico-deductive framework, in
which we used an existing model of patient experiences
of care transitions [21] to capture and systematically
analyze the perspectives of caregivers as told through
open-ended response data [29, 30]. e original cod-
ing framework for patient comments included 4 main
themes (Care in the emergency department, Conditions of
stay, Independent living at home, and Discharge) 19 sub-
themes [21]. Changes made to this coding framework to
better reflect caregiver experiences are discussed in the
Results.
For coding, we noted when a sub-theme appeared in
a comment (1 for affirmative, 0 for no mention) in addi-
tion to its emotional valence, which reflects the extent
to which a comment reads as positive or negative in its
statement. We used a quantifiable metric scaling system
in which we rate the emotional valence of the comment:
0 negative, 1 positive, and 2 neutral. Importantly, we
coded the absence of a requested service or item as nega-
tive because we argue that unmet needs are negative in
valence.
Inter-rater reliability was established by independently
coding 40 randomly selected comments (Responses to
Question B) in parallel. e resulting reliability coef-
ficient was high (Krippendorff’s Alpha: 0.90) [31]. Disa-
greements were then resolved by discussion between the
two coders (NG and EJG) and the principal investigator
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Germainetal. BMC Geriatrics (2024) 24:788
(PA). e analysis was performed by two female evalua-
tors from different scientific backgrounds (NG, an MSc
student in epidemiology with training in mixed meth-
ods, and EJG, an MD student with research and clinical
experience) and supervised by an experienced clinician
researcher with expertise in qualitative analyses (PA)
[32].
It was planned that after coding comments using this
patient-centered coding scheme [21] and establishing
inter-rater reliability, we would shift the model from
patient-centered to caregiver-centered using an induc-
tive/deductive hybrid thematic approach [33]. We
allowed for new themes to emerge, and themes that did
not fit with the data to be dropped. We then systemati-
cally applied this amended model of caregiver experi-
ences to code the dataset. At this stage, two coders (NG
and EJG) performed content analysis until saturation,
stopping when additional comments did not reveal
new themes [34]. Each individually coded 30 randomly
selected comments per hospital (selection without
replacement) [34], then additional randomly selected
comments in rounds of 10. Saturation was achieved when
coding 2 consecutive rounds of 10 without the emer-
gence of a new theme per hospital.
Statistical andvisual analyses
An a-priori power analysis was conducted for LEARN-
ING WISDOM and is described elsewhere [18]. No
a-priori power analysis was conducted for the analyses
in this article. For caregivers included in content analysis,
we conducted a binomial test of the proportion of each
self-reported burden change category versus chance. If
the groups were distributed randomly, and there was no
pattern of changes in subjective burden following a care
transition, we would expect each category to contain 25%
of caregivers.
To corroborate scores on the ZBI with caregiver reports
as to how their level of burden may have increased. We
conducted a one-way analysis of variance (ANOVA) of
subjective change in burden on ZBI score. e assump-
tion of homogeneity of variance was violated (Levene’s
test F(3, 577) = 3.18, p = 0.023), so we conducted the
ANOVA with a Brown-Forsythe correction. We also con-
ducted a one-way analysis of covariance (ANCOVA) to
determine if a difference on ZBI scores exists as a func-
tion of their self-reported change in subjective burden
while controlling for age and comorbidities.
For comments containing two or more themes, we
used the quanteda package in R (Quantitative Analysis of
Textual Data) [35] to visualize and organize concurrent
themes within caregiver comments using a series of co-
occurrence network plots.
Results
e total LEARNING WISDOM cohort included 5,016
participating patients (Fig.1). Patients (n = 1819) allowed
the research team to contact their caregiver, and 410
caregivers were excluded or declined to participate,
leaving 1,409 patient-caregiver dyads. Of these, 778 car-
egivers provided open-response comments to Question
A (Appendix A, French version). Of these caregivers, 752
responded to Question B.
Of 778 caregiver responses, 581 were analyzed, along
with their ZBI questionnaires: 229 from HDL, 125 from
HTM, 114 from HDM and 113 from HSG. Among car-
egivers, 138 (23.7%) reported an increase in caregiver
burden following a care transition, 374 (64.3%) had an
unchanged level of burden, 43 (7.4%) had an improved
burden, and 26 (4.4%) opted not to comment. Demo-
graphic characteristics of 581 caregivers and patients
are found in Table1, stratified by self-reported change
in burden. Among analyzed caregiver comments, 235
mentioned at least one sub-theme and 328 did not con-
tain enough content to extract any themes. Concerning
the overall emotional valence of these 253 comments, 60
were positive (23.7%), 33 neutral (13%), and 160 negative
(63.2%).
Quantitative results
e mean score on the ZBI among all caregivers included
in the qualitative analysis (N = 581) was 7.55 (SD = 7.36),
with a median of 5 (IQR = 2–11; Range = 0–38). e
internal consistency was high (α = 0.879, 95% CI = [0.86,
0.89]).
Changes incaregiver burden followingavisit
totheemergency department
Cohen’s Kappa was calculated to quantify interrater relia-
bility between the two coders (κ = 0.989, 647 comments).
Results of the ANOVA analysis revealed statistically
significant differences in self-reported burden across
the four categories (Binomial test χ2 = 530.5, p < 0.001):
most caregivers reported that their level of burden did
not change (64.3%), but 23.8% of caregivers reported an
increase in caregiver burden.
Changes incaregiver burden followingavisit
totheemergency department andscores ontheZBI
e effect of subjective change in burden on ZBI
score was statistically significant (F(3, 191.62) = 11.83,
p < 0.001). Caregivers who chose not to comment had
the lowest ZBI scores (n = 26, M = 5.73, SD = 5.14), fol-
lowed by caregivers with a level of burden left unchanged
(n = 374, M = 6.56, SD = 7.02). Next were caregivers with
a level of burden that improved following thepatient’s
visit to the emergency department (n = 43, M = 7.65,
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Germainetal. BMC Geriatrics (2024) 24:788
SD = 7.21). Caregivers who reported an increase in their
subjective burden had the highest ZBI scores (n = 138,
M = 10.53, SD = 7.87). ZBI scores among the increased
burden group were statistically significantly differ-
ent from the unchanged burden group (t(510) = 5.54,
p < 0.001, d = 0.55), and the no comment group
(t(162) = 3.12, p = 0.01, d = 0.66).
ere was a statistically significant effect of change in
burden on ZBI score even when controlling for age and
comorbidities (F(3, 575) = 11.03, p < 0.001), and there was
a statistically significant effect of Charlson Comorbid-
ity Index score on ZBI score (F(1, 575) = 4.95, p = 0.026)
but there was no effect of patient age on ZBI score (F(1,
575) = 0.007, p = 0.935).
Fig. 1 Flowchart describing the recruitment of patients and their caregivers
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Germainetal. BMC Geriatrics (2024) 24:788
Table 1 Demographic characteristics of patients and caregivers stratified by the caregiver’s self‑reported change in burden
No comment
(N = 26)
4.4%
Burden increased
(N = 138)
23.7%
Burden unchanged
(N = 374)
64.3%
Burden improved
(N = 43)
7.4%
Overall
(N = 581)
Hospital
HDL 10 (38.5%) 66 (47.8%) 137 (36.6%) 16 (37.2%) 229 (39.4%)
HSG 3 (11.5%) 21 (15.2%) 79 (21.1%) 10 (23.3%) 113 (19.4%)
HDM 10 (38.5%) 25 (18.1%) 72 (19.3%) 7 (16.3%) 114 (19.6%)
HTM 3 (11.5%) 26 (18.8%) 86 (23.0%) 10 (23.3%) 125 (21.5%)
Patient age
Mean (SD) 80.1 (8.34) 78.4 (7.33) 76.5 (7.34) 77.7 (8.70) 77.2 (7.54)
Patient gender
Man 12 (46.2%) 65 (47.1%) 198 (52.9%) 27 (62.8%) 302 (52.0%)
Woman 14 (53.8%) 73 (52.9%) 176 (47.1%) 16 (37.2%) 279 (48.0%)
Arrival at the ED
Ambulance 12 (46.2%) 83 (60.1%) 184 (49.2%) 20 (46.5%) 299 (51.5%)
Walk‑in 14 (53.8%) 55 (39.9%) 190 (50.8%) 23 (53.5%) 282 (48.5%)
Canadian Triage Acuity Scale (CTAS)
1 0 (0%) 0 (0%) 1 (0.3%) 0 (0%) 1 (0.2%)
2 2 (7.7%) 16 (11.6%) 44 (11.8%) 9 (20.9%) 71 (12.2%)
3 17 (65.4%) 65 (47.1%) 198 (52.9%) 17 (39.5%) 297 (51.1%)
4 7 (26.9%) 51 (37.0%) 123 (32.9%) 13 (30.2%) 194 (33.4%)
5 0 (0%) 6 (4.3%) 8 (2.1%) 4 (9.3%) 18 (3.1%)
Time on stretcher (hours)
Mean (SD) 10.3 (7.36) 12.1 (8.57) 10.5 (8.31) 14.3 (7.85) 11.2 (8.36)
Charlson Comorbidity Index Score
Mean (SD) 6.12 (2.58) 5.04 (1.73) 5.06 (2.09) 5.42 (2.30) 5.13 (2.06)
Covid-19 Wave at time of ED visit (Québec)a
Pre‑pandemic 18 (69.2%) 107 (77.5%) 259 (69.3%) 26 (60.5%) 410 (70.6%)
Wave 1 7 (26.9%) 29 (21.0%) 111 (29.7%) 16 (37.2%) 163 (28.1%)
Between the end of wave 1 and wave 2 1 (3.8%) 2 (1.4%) 4 (1.1%) 1 (2.3%) 8 (1.4%)
Have a family physician
Yes 24 (92.3%) 131 (94.9%) 352 (94.1%) 39 (90.7%) 546 (94.0%)
No 2 (7.7%) 7 (5.1%) 22 (5.9%) 4 (9.3%) 35 (6.0%)
Can quickly get an appointment with family physician if needed
Yes 18 (69.2%) 77 (55.8%) 239 (63.9%) 28 (65.1%) 362 (62.3%)
No 8 (30.8%) 61 (44.2%) 135 (36.1%) 15 (34.9%) 219 (37.7%)
Have access to transport
Yes 23 (88.5%) 127 (92.0%) 347 (92.8%) 41 (95.3%) 538 (92.6%)
No 3 (11.5%) 11 (8.0%) 27 (7.2%) 2 (4.7%) 43 (7.4%)
People in social circle
Mean (SD) 4.31 (5.14) 3.30 (2.53) 4.07 (3.57) 3.72 (2.33) 3.87 (3.37)
First language
French 26 (100%) 138 (100%) 373 (99.7%) 43 (100%) 580 (99.8%)
Missing 0 (0%) 0 (0%) 1 (0.3%) 0 (0%) 1 (0.2%)
Patient ethnicity
Caucasian 26 (100%) 138 (100%) 374 (100%) 41 (95.3%) 579 (99.7%)
Missing 0 (0%) 0 (0%) 0 (0%) 2 (4.7%) 2 (0.3%)
Patient highest level of education
Primary school 11 (42.3%) 60 (43.5%) 155 (41.4%) 20 (46.5%) 246 (42.3%)
Secondary school (DES) 6 (23.1%) 45 (32.6%) 96 (25.7%) 11 (25.6%) 158 (27.2%)
College (DEC) 4 (15.4%) 12 (8.7%) 40 (10.7%) 3 (7.0%) 59 (10.2%)
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Germainetal. BMC Geriatrics (2024) 24:788
Table 1 (continued)
No comment
(N = 26)
4.4%
Burden increased
(N = 138)
23.7%
Burden unchanged
(N = 374)
64.3%
Burden improved
(N = 43)
7.4%
Overall
(N = 581)
Vocational studies (DEP) 2 (7.7%) 11 (8.0%) 34 (9.1%) 3 (7.0%) 50 (8.6%)
University studies 3 (11.15%) 9 (5.5%) 49 (13.1%) 6 (14%) 67 (11.15%)
Missing 0 (0%) 1 (0.7%) 0 (0%) 0 (0%) 1 (0.2%)
Patient income
Less than 10 000$ 0 (0%) 5 (3.6%) 10 (2.7%) 4 (9.3%) 19 (3.3%)
10 000 to 19 999$ 6 (23.1%) 40 (29.0%) 64 (17.1%) 9 (20.9%) 119 (20.5%)
20 000 to 29 999$ 5 (19.2%) 34 (24.6%) 65 (17.4%) 5 (11.6%) 109 (18.8%)
30 000 to 39 999$ 3 (11.5%) 13 (9.4%) 43 (11.5%) 3 (7.0%) 62 (10.7%)
40 000 to 49 999$ 5 (19.2%) 5 (3.6%) 34 (9.1%) 2 (4.7%) 46 (7.9%)
50 000 to 59 999$ 1 (3.8%) 1 (0.7%) 11 (2.9%) 2 (4.7%) 15 (2.6%)
60 000 to 69 999$ 1 (3.8%) 2 (1.4%) 8 (2.1%) 2 (4.7%) 13 (2.2%)
70 000 to 79 999$ 0 (0%) 1 (0.7%) 6 (1.6%) 1 (2.3%) 8 (1.4%)
80 000 to 89 999$ 0 (0%) 2 (1.4%) 1 (0.3%) 1 (2.3%) 4 (0.7%)
90 000 to 99 999$ 0 (0%) 0 (0%) 2 (0.5%) 0 (0%) 2 (0.3%)
More than 100 000$ 0 (0%) 2 (1.4%) 11 (2.9%) 1 (2.3%) 14 (2.4%)
Missing 5 (19.2%) 33 (23.9%) 119 (31.8%) 13 (30.2%) 170 (29.3%)
Patient housing type
Home alone, intermediate or family‑type
residences, or public housing 5 (11.5%) 43 (29.0%) 70 (18.2%) 14 (32.6%) 132 (21.5%)
Home, shared with a spouse or family 19 (73.1%) 80 (58.0%) 267 (71.4%) 25 (58.1%) 391 (67.3%)
Retirement home 2 (7.7%) 15 (10.9%) 37 (9.9%) 4 (9.3%) 58 (10.0%)
Patient-Caregiver relationship
Friend, sibling, or other 4 (15.4%) 11 (8.0%) 45 (12.0%) 6 (14.0%) 66 (11.4%)
Parent–Child 9 (34.6%) 64 (46.4%) 116 (31.0%) 19 (44.2%) 208 (35.8%)
Spouse 13 (50.0%) 63 (45.7%) 212 (56.7%) 18 (41.9%) 306 (52.7%)
Missing 0 (0%) 0 (0%) 1 (0.3%) 0 (0%) 1 (0.2%)
Caregiver age
Mean (SD) 64.7 (11.2) 62.8 (13.2) 65.4 (11.8) 62.0 (13.7) 64.5 (12.3)
Caregiver gender
Man 3 (11.5%) 45 (32.6%) 118 (31.6%) 10 (23.3%) 176 (30.3%)
Woman 23 (88.5%) 93 (67.4%) 256 (68.4%) 33 (76.7%) 405 (69.7%)
Caregiver rst language
French 26 (100%) 137 (99.3%) 370 (98.7%) 43 (100%) 576 (99.0%)
English 0 (0%) 1 (0.7%) 4 (1.1%) 0 (0%) 5 (0.9%)
Caregiver highest level of education
Primary school 9 (34.6%) 56 (40.6%) 142 (38.0%) 18 (41.9%) 225 (38.7%)
Secondary school (DES) 6 (23.1%) 45 (32.6%) 98 (26.2%) 11 (25.6%) 160 (27.5%)
College (DEC) 7 (26.9%) 17 (12.3%) 64 (17.1%) 8 (18.6%) 96 (16.5%)
Vocational studies (DEP) 3 (11.5%) 12 (8.7%) 36 (9.6%) 3 (7.0%) 54 (9.3%)
University studies 1 (3.8%) 8 (5.8%) 34 (9.1%) 3 (7.0%) 46 (7.9%)
Graduate school 0 (0%) 0 (0%) 0 (0%) 0 (0%) 0 (0%)
Caregiver income
Less than 10 000$ 1 (3.8%) 6 (4.3%) 8 (2.1%) 2 (4.7%) 17 (2.9%)
10 000 to 19 999$ 3 (11.5%) 19 (13.8%) 25 (6.7%) 4 (9.3%) 51 (8.8%)
20 000 to 29 999$ 4 (15.4%) 11 (8.0%) 42 (11.2%) 6 (14.0%) 63 (10.8%)
30 000 to 39 999$ 2 (7.7%) 11 (8.0%) 43 (11.5%) 9 (20.9%) 65 (11.2%)
40 000 to 49 999$ 4 (15.4%) 18 (13.0%) 35 (9.4%) 3 (7.0%) 60 (10.3%)
50 000 to 59 999$ 1 (3.8%) 8 (5.8%) 18 (4.8%) 3 (7.0%) 30 (5.2%)
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Page 8 of 17
Germainetal. BMC Geriatrics (2024) 24:788
Table 1 (continued)
No comment
(N = 26)
4.4%
Burden increased
(N = 138)
23.7%
Burden unchanged
(N = 374)
64.3%
Burden improved
(N = 43)
7.4%
Overall
(N = 581)
60 000 to 69 999$ 0 (0%) 4 (2.9%) 22 (5.9%) 0 (0%) 26 (4.5%)
70 000 to 79 999$ 3 (11.5%) 3 (2.2%) 9 (2.4%) 1 (2.3%) 16 (2.8%)
80 000 to 89 999$ 0 (0%) 2 (1.4%) 12 (3.2%) 1 (2.3%) 15 (2.6%)
90 000 to 99 999$ 0 (0%) 2 (1.4%) 9 (2.4%) 0 (0%) 11 (1.9%)
More than 100 000$ 1 (3.8%) 16 (11.6%) 25 (6.7%) 4 (9.3%) 46 (7.9%)
Missing 7 (26.9%) 38 (27.5%) 126 (33.7%) 10 (23.3%) 181 (31.2%)
ZBI score
Mean (SD) 5.73 (5.42) 10.5 (7.87) 6.57 (7.02) 7.65 (7.21) 7.55 (7.36)
Delay between ED index visit and caregiver recruitment (days)
Mean (SD) 24.8 (15.8) 22.9 (19.1) 27.9 (33.0) 27.1 (17.4) 26.5 (28.7)
a Dates from the Institut national de santé publique du Québec (INSPQ): Pre-pandemic (Before March 13th, 2020), wave 1 (Between March 13th, 2020, to 11th of July
2020), Between the end of wave 1 and the beginning of wave 2 (12th of July 2020 to the 22nd of August 2020)
Fig. 2 Mind map of the three main themes and seventeen sub‑themes emerging from caregivers’ responses to the question: “In your opinion,
what could be improved to reduce the burden of care for [the patient]?” following the patient’s transition of care from the emergency
department to home. A transversal theme, Timeliness of receiving services is also identified. See Fig. 3 for frequencies of each sub‑theme mentioned
and a graphical representation of the relative proportion of emotional valence associated with each sub‑theme
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Page 9 of 17
Germainetal. BMC Geriatrics (2024) 24:788
Qualitative results
Analysis ofthemes withinthecontent analysis
Our final caregiver-centered care transition coding
scheme contained three main themes: Care in the emer-
gency department, Emergency Department Discharge and
Capacity to live at home and 14 sub-themes (Fig.2). See
Appendix D for a definition of each theme, sub-theme,
and an example of each. We counted when caregiv-
ers specifically mentioned each of three statements: an
explicit call for help or information, a mention of time or
financial costs associated with caregiving, and a mention
of their patient’s autonomy for a total of 17 sub-themes
(Fig.3). After making these amendments, 50 randomly
selected comments were analyzed per coder, and again
inter-rater reliability was very high (κ= 0.991).
Care intheemergency department
Both comments citing Professionalism in the emergency
department were negative. One caregiver felt the person-
nel at the ED lacked humanity and understanding of the
situation. Another caregiver felt their physician was being
negligent in their duties, changing the patient’s prescrip-
tions without consulting the patient nor the caregiver.
“ere is a lack of consistency among physicians.
Fig. 3 A Frequency of sub‑themes, stratified by emotional valence emerging from 253 caregiver comments. B Relative proportions of negative,
neutral, and positive sentiments coded to each theme embedded in 253 caregiver comments. For both A and B, red represents negative theme
mentions, yellow neutral, and green positive
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Germainetal. BMC Geriatrics (2024) 24:788
One played around with [the patient’s] prescrip-
tions, decreased her medication dose without even
examining her, without even looking at her back
problem. [e physician] said “cut this” and I am the
one who sees the repercussions of this […] I would
like to have something to give her to relieve her pain.
Pain is the worst thing. It’s ashard for me as it is for
her.” [C318, HDL]
Explanations were viewed as negative by 6 caregiv-
ers. Two caregivers mentioned a lack of instruction for
managing the patient’s conditions post discharge. One
caregiver mentioned that they would have preferred to
speak to the physician themselves because they felt as
though the patient was withholding information and
was being stubborn about adherence to treatment. Two
caregivers mentioned having to relay information to the
patient, who did not understand the information given
to them by personnel.
“It’s difficult because I have a stubborn mother,
and I don’t get to see the doctors myself. More com-
plete explanations to help my mother would be
appreciated because I feel like she’s minimizing the
problem to protect me. I’d like to make sure I help
her properly.” [C330, HDL]
Regarding Communication in care, 5 caregivers
reported successful follow-up between departments
or with specialists following their departure from the
ED. Among negative commenters, 3 reported that they
were still waiting to see a specialist, 8 mentioned gaps
in access to information or wanting to know where and
how to request different services. Four specifically sug-
gested telephone follow-up calls to pass along updates
and to see how patients are managing at home. Four
specifically mentioned difficulty reaching their fam-
ily physician, and the remaining comments referred to
waiting for the ED to transfer information or requests
to other departments or outside services like convales-
cence homes, social services, and specialists.
“[…] It is a chore to be able to open a medical file
at the [local community service center]. Getting
access to resources is not as bad [after a visit to
the ED], but this process would really need to be
reviewed. It’s long and painful.” [C507, HDM]
Caregivers who reported Accompaniment of the
patient to the ED tended to view this theme negatively.
Five caregivers mentioned assistance with or having
someone else accompany the patient to their appoint-
ments would be helpful. Four caregivers mentioned
that accompanying the patient was personally taxing or
affected their work schedule. One caregiver described
relief that ten months of treatment requiring weekly
visits was coming to an end. One caregiver reported
positively, and one neutrally that they accompanied
the patient to their medical appointments following an
initial visit to the ED. One caregiver reported frustra-
tion that despite being there during the appointment,
she was not allowed into the doctor’s office and that her
mother would forget what the doctor had told her.
“[We would like] more accompaniment and follow-
up outside the [emergency department]. is could
prevent him from returning so often for the same
thing.” [C94, HDL]
Of the 15 caregivers citing Clinical interventions in
their comments, 7 mentioned the quality of care;, of
which 2 were negative. One caregiver felt the manage-
ment of the patient’s condition had room for improve-
ment, while another caregiver felt that the patient was
being treated with medications that only made them
sicker, saying “ey just give her pills. She overdoses and
then they give her other pills” [C404, Hospital B]. e
remaining comments cited care at the ED as good or
excellent. ree other sub-themes emerged, and all were
negatively referenced. One caregiver cited an error with
medications, 3 felt the waiting time at the ED was too
long, and one caregiver felt the patient was not given
the correct diagnosis, saying “…that he would have been
properly diagnosed, I would have liked him to be seen and
re-evaluated in geriatrics” [C172, HSG].
Capacity tolive athome
is main theme, related to services empowering older
adults to stay independent at home, was dominated
by comments about Home care. We coded comments
as negative if a service was requested but not yet deliv-
ered, in addition to negative experiences with homecare
services that were delivered. Of these, 37 (22% positive)
mentioned requesting or receiving care from a local
community service center (or also known as “CLSC”
in Québec), 10 (40% positive) mentioned receiving or
requesting home visits from a physician or nurse.
“Blood tests [could be done] at home, getting up [to
get to there] is difficult, [and] it’s too long to wait five
hours in the morning without having eaten.” [C530,
HTM]
Nineteen mentioned living in or requesting adapted
living environments (74% positive), and 8 mentioned
they were waiting to be assigned a family physician; all of
which were negative.
“[Would] appreciate having a family doctor. We’ve
been on the waiting list for two years. It’s worrying.”
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Germainetal. BMC Geriatrics (2024) 24:788
[C38, HDL]
Eleven caregivers mentioned Isolation as an area for
improvement. ree mentioned wishing the patient lived
closer, and the remainder mentioned wanting someone
(a volunteer, other family member, or guardian) to spend
some time with the patient, either to help with loneliness
or boredom, or to accompany them to activities outside
the home.
“One big problem is isolation. He suffers from bore-
dom and loneliness. It’s a vicious circle [because the]
burden becomes even heavier. I feel that we are his
only source of happiness.” [C403, HDM]
Similarly, Home Transport was used to code 6 men-
tions of non-medical transport. All comments requested
access to transport for everyday needs like grocery shop-
ping, and two caregivers suggested that access to this
kind of transport would allow the patient to indepen-
dently run errands.
“[I would like to see] an increase in people able to
meet the needs of everyday life, like transport for
errands.” [C124, HDL].
e Familial context emerged 35 times in the data-
set, with most comments negative (86%). Two caregiv-
ers mentioned they did not mind taking care of their
spouses, seeing it as part of their role. ree others men-
tioned other family members pitched in to help, dividing
the workload. One of these caregivers mentioned ongo-
ing discussions between their mother and the rest of the
family, trying to convince their mother to sell the family
home and move to a more manageable residence. Similar
discussions were reported negatively, with 4 caregivers
mentioning the main problem was convincing the patient
to accept their condition or to accept help.
"My mother is taking care of my father [who has Alz-
heimer’s] and I wish someone would take care of my
father so that my mother can take care of herself.
My mother has anxiety attacks. She can’t have help
from the [local community service center] because
my father does not want to see anyone. If he does
not accept care, my mother does not accept it either.
I am less and less confident in her [abilities to take
care of him]. I’m tired of always trying to convince
my mother [to accept help]." [C179, HDM]
Five caregivers expressed frustration that they were
not involved in shared decision-making about care and
would have liked to be part of that process. e remain-
der expressed conflict or frustration with other family
members, usually a desire for other family members to
pull their weight or visit the patient from time to time.
One caregiver mentioned wishing her son could trust
that she was able to adequately care for his father.
Concerning Domestic help, seven positive comments
mentioned that the caregiver felt housekeeping or cook-
ing duties were adequately addressed. Caregivers with
negative comments (54) mentioned requesting help with
household cleaning, making meals, and shoveling snow.
Two caregivers mentioned a service cooperative han-
dled these tasks but canceled their services during the
pandemic.
“[…] get some outside help. For example, it was
snowing this week, but [the patient] cannot shovel,
so I had to drive 20km to clear his driveway. Help
with housekeeping would be nice too.” [C24, HDL]
For three exploratory themes, Calls for help or infor-
mation occurred 27 times, with caregivers requesting
help for household tasks that they were not comfort-
able with (e.g., toileting, bathing). Most of these com-
ments requested more services to help with respite, and
to understand which services are available and how to
request them through proper channels. One caregiver
mentioned having information on how to “get through it
(or cope) when the situation becomes complicated” [C297,
Hospital A] would be helpful. Among comments cit-
ing the Costs of caregiving, 8 mentioned financial costs,
with 2 caregivers mentioning that they would appreciate
government financial aid. One caregiver mentioned an
accumulation of stress that she felt was costing her own
wellbeing. Caregivers who mentioned financial costs also
often cited costs to time (4), mentioning taking time off
work, or working less to fulfill their caregiving role.
“[I’d suggest to] maybe pair the appointments so
they’re all on the same day. I’d miss less work.” [C108,
HDL]
Autonomy was another common mention, occur-
ring 35 times. In 28 cases, caregivers mentioned the
patient was autonomous, and in these cases, caregivers
reported overall positively. In 24 cases, there was noth-
ing else to add in response. at is, autonomy was the
only theme mentioned, and often in a one-word answer:
“autonomous”.
“[I have nothing to add] he is one hundred percent
autonomous!” [C147, HDM]
One caregiver reported that the patient was not auton-
omous, and that she dared not leave him alone. Another
reported that the patient was living at home alone but
suspected that they needed help with household tasks
but would not ask for them.
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Germainetal. BMC Geriatrics (2024) 24:788
Departure
We considered mentions of medical Transport to fall
under a larger theme of Departure but all mentioned
medical transport specifically: including transport to
medical appointments and procedures (7 comments)
or mentions that adapted transport should be improved
to allow older patients to autonomously attend their
own appointments (3). All these comments mentioned
gaps in the availability of transport, so they were coded
negatively.
“Transportation for medical appointments. When
she goes for blood transfusions, it’s long. It would be
nice if someone else could do it [handle transporta-
tion].” [C533, HTM]
Timeliness ofservices inandafter theED
e timeliness of receiving services in and after ED care
was a transversal theme. We did not identify the timeli-
ness of services as an individual sub-theme as it affected
each major theme individually. For Care in the emergency
department, 3 caregivers felt their wait time at the ED
was too long, 3 caregivers mentioned long wait times to
get follow-up care with a specialist after the ED visit, and
5 were still waiting for the ED to transfer information to
a third party. For Capacity to live at home, issues with
timeliness of services were most apparent, as we coded
comments as negative if a service was requested but not
yet delivered.
“[We are] waiting for [local community service
center] care, [and there is a] lack of follow-up
between hospital and rehabilitation. It’s very long.”
[C367, HDL]
e most frequent unmet requests for service were
regarding awaiting services from local community service
centers (CLSCs; 29 mentions, including home care ser-
vices specifically; 6 mentions), and waiting to be assigned
a family physician (8 mentions). All comments mention-
ing Discharge were coded negatively: highlighting gaps in
the availability of timely and convenient transport.
Caregivers who did notmention any theme
Of 331 caregivers who did not mention any themes in
their comments, (85.7%) were neutral in tone, citing
that they could not think of anything to report, or that
they did not experience any burden of care to speak of.
Forty-three caregivers mentioned that they had nothing
to report because things were going well. One caregiver
mentioned that things were going well and that they were
content with the resources at their disposal. Another
caregiver mentioned that everything was fine because
she was retired and able to meet the patient’s needs, but
acknowledged that if she had still been working, things
would have been different. Only four caregivers left nega-
tive comments with no main themes emerging. One
caregiver mentioned displeasure with their role as a car-
egiver, and another caregiver mentioned wishing that the
patient would be able to function on their own. Another
voiced that they could not think of anything that would
help the patient, and a final comment mentioned the
patient was in pain, but nothing could be done except to
wait for the pain to pass.
Co-occurrence networks
Following the analysis of themes and sub-themes, we
noticed that some caregivers gave comments containing
more than one theme (n = 71). We stratified the dataset
by self-reported change in burden (increased = 30, sta-
ble = 28, improved = 2; 11 caregivers did respond regard-
ing a self-reported change in burden) to visualize which
themes occur together and how they interact on this
basis (Fig.4).
For caregivers reporting an unchanged (stable) burden
following an ED care transition, central interconnected
themes include communications, calls for help, home
care, and domestic help. For caregivers reporting an
increased burden, interconnected themes appear much
more complex and include accompaniment, the familial
context, costs, domestic help, explanations, calls for help,
and communications. e bands linking domestic help
to the familial context, costs, and calls for help are also
thicker, indicating a greater importance of these themes
in the comments of caregivers reporting an increase in
subjective burden. For caregivers reporting a reduced
burden, only two links emerged: the link between auton-
omy and domestic help, and homecare and communica-
tions. ese links also emerge in the stable and increased
burden groups, indicating that these two joined sets
of themes may be important for all the caregivers we
surveyed.
Discussion
We conducted a mixed methods design to understand,
from the caregiver’s point of view, A) changes in burden
of care following transitioning a patient’s care from the
ED and B) what can be improved in the patient’s transi-
tion of care in this context. We also leveraged the French
version of the Zarit Brief Burden interview (ZBI-12) to
corroborate scores on caregiver burden with caregiving
realities as reported by caregivers.
Changes in subjective burden appeared to correspond
with ZBI scores. Greater ZBI scores are given to mean
a greater level of caregiver burden. Most caregivers
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Germainetal. BMC Geriatrics (2024) 24:788
reported that their level of burden did not change
(64.3%), and their average ZBI score was 6.57 on 48, con-
sidered a moderate level of burden [9]. Caregivers report-
ing an increase in burden (23.8%) had an average ZBI of
10.5, considered high burden [9]. Mean scores of caregiv-
ers who reported an improvement in subjective burden
(7.4%) were 7.65. Only the ZBI scores of the caregivers
experiencing an increase in burden statistically differed
from caregivers with stable burden. is effect remained
when controlling for age and comorbidities of the patient.
In the original French-Canadian ZBI-12 validated with
caregivers of the patient with dementia, scores between 3
and 8 indicated moderate burden and scores greater than
18, severe burden [9]. e cut-point signaling significant
caregiver burden in other populations can be as low as
11 [36], 12 [37], 13 [38], up to 17 [39, 40]. is ZBI cutoff
score appears to increase as the patient’s cognitive func-
tion decreases [40].
Caregivers who have higher levels of burden likely have
greater room for improvements to burden, which may
explain why caregivers in this improved burden group
have higher ZBI scores than caregivers in the stable bur-
den group. is effect has been documented in inter-
ventional studies aiming to reduce caregiver burden:
caregivers with higher baseline burden experienced the
greatest benefits in reducing burden [41]. Without base-
line questionnaire data, we are limited to speculation as
to how ZBI scores were affected by the care transition
from the ED.
We also extracted themes from caregiver comments
to triangulate experiences in caregiver burden with ZBI
scores. Most caregivers did not mention any themes in
their comments, most neutrally citing they had nothing
Fig. 4 Co‑occurrence networks of themes appearing in comments, by self‑reported level of burden following departure from the emergency
department. Lines between themes indicate co‑occurrences within the same comment. Thinner lines represent fewer co‑occurrences between two
themes, and thicker lines denote more frequent co‑occurrences
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Germainetal. BMC Geriatrics (2024) 24:788
to report regarding what could be changed to improve
their experiences of burden. ZBI scores of caregivers
reporting no change in burden following the ED care
transition were the lowest, and accordingly, caregivers
with higher ZBI scores corresponded to reporting an
increase in burden following an ED care transition. ose
caregivers reported greater needs in homecare, domestic
help, and greater challenges in communications and fol-
low-up, the familial context, and in calls for help.
Caregivers providing comments reported concepts
negatively, either indicating dissatisfaction or not yet
receiving a service. Home care was the most prevalent
sub-theme, with both positive and negative experiences
discussed, followed by Domestic help and Familial con-
text. Within home care related comments, outpatient
care from community clinics and home visits from a phy-
sician or nurse were appreciated by caregivers.
Communications and follow-up were also highlighted,
mostly negatively. is theme has been negatively cited
elsewhere in qualitative research of caregiver experiences
in a transition from acute to community care [21, 42, 43].
is suggests that currently, there are serious inadequa-
cies in communication between care settings, and there-
fore threats to the continuity of care for patients and their
caregivers following emergency treatment. Issues with
the timeliness of services for home care were more pro-
nounced in caregiver comments than by the patients in
this same cohort [21]. Involving caregivers either by call-
ing them from the ED or including them in the construc-
tion of discharge plans as crucial to the feasibility and
therefore the success of care transitions.
Clinical interventions were mentioned, with mixed
sentiments, while Accompaniment and Isolation were
predominantly viewed negatively. Home Transport
and Capacity to live at home were discussed often with
negative connotations. In a previous analysis of themes
emerging from patients in the care of these caregivers
[21], patients were both more frequent and more posi-
tive reporters on the quality of clinical interventions. is
illustrates important differences between patient and
caregiver perspectives within the same dyad. Domestic
help was the most common sub-theme among caregiv-
ers, but Communications and follow-up were similarly
referenced frequently as an area for improvement among
both patients and their caregivers. If follow-up could be
appropriately managed with the involvement of primary
care, integrated case management [44] facilitated by
access to a single electronic medical record [45], and bet-
ter communication of goals of care [46], time and energy
caregivers spend coordinating care could be spent on
other affairs, including domestic help, navigating familial
responsibilities, or simply passing quality time with the
patient.
We split the dataset based on caregivers’ self-reported
changes in burden (whether it increased, remained sta-
ble, or improved) to visually depict the co-occurrence
and interactions of various sub-themes. Among caregiv-
ers who indicated a stable level of burden after an ED care
transition, key interrelated sub-themes were Communi-
cations, Calls for help, Home care, and Domestic help. In
cases of increased burden, the interconnections among
sub-themes were more complex, and connections linking
domestic help to family context, finances, and calls for
help were more pronounced, indicating their heightened
importance to this group and greater needs of highly bur-
dened caregivers. Caregivers report an improved burden
only on Autonomy and Domestic help, and Home care
and Communications, suggesting that these sub-themes
are common experiences across the spectrum of burden.
Caregivers who call for help or those facing the declining
autonomy of a patient could benefit from care navigators
or public awareness campaigns to present the services
available to them in their communities (e.g. respite care
for caregivers), and their own rights and protections (e.g.
employment or familial status) under local laws.
Strengths andlimitations
e strengths of our study arise from the application of
both quantitative and qualitative methodologies, and
from substantial random sampling at four different EDs.
Our strong inter-rater reliability indicates a clear cod-
ing scheme, which we attribute to the iterative hybrid
development of an original coding scheme developed for
patient comments.
Limitations of this study include the short nature of
responses from caregivers. Open-response data can lack
data substantial enough to achieve substantial credibil-
ity and resonance [47]. However, we were able to ana-
lyze several hundred comments—one way to boost the
richness of otherwise sparse data. We acknowledge that
an important proportion did not comment on their bur-
den level (4.5% replied “no comment” to Question A).
e fact that caregivers took the time to complete the
ZBI during this phone call, and provided generally short
responses about improvements to care transitions might
be a reflection of these caregivers truly not feeling or
knowing what can be improved (48.7% of caregivers said
they had nothing to report or nothing they feel could be
improved in response to Question B) and not a result
of insufficient sampling. We were also not able to dis-
tinguish between incident (sudden) and long-term car-
egivers [48] or describe caregivers’ own health status or
comorbidities [49]. Both factors likely impact both car-
egiver burden and the quality of care transitions, which
presents an avenue for future research.
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Germainetal. BMC Geriatrics (2024) 24:788
Another limitation is that comments for this study
were collected over the telephone and transcribed imme-
diately by a research professional. We did not audio
record caregivers’ comments. is may have introduced
an information bias such that the content was filtered
by the research professional conducting the interviews.
Follow-up time poses another challenge, as patients were
called to participate between 1–7 days following dis-
charge. Follow-up time for caregivers (M = 26 days) was
much more variable than the weeklong follow-up time of
patients. Collection soon after ED discharge may capture
the caregiver’s experience but if too soon, may not have
left sufficient time to undergo all relevant aspects of the
care transition.
Overall, our study highlights the importance of screen-
ing for caregiver burden in the ED. Better understanding
caregiver unmet needs can guide ED clinicians in find-
ing adapted solutions to meet these needs. While it may
seem that discussions of caregiver burden may prove
prohibitively time-consuming, shorter andswifter tools
have evidence of efficacy in older adult populations. One
national American study found that three-quarters of
primary care physicians felt responsible to identify car-
egiver needs when seeing patients, and half felt it impor-
tant to address caregiver health and mental health in
their assessment [50]. Physicians were four times as likely
to take caregiver needs into consideration if they them-
selves acted in a caregiving role [50]. We are optimistic
that while caregivers often cited gaps in home healthcare
services, physicians and decision-makers appear to be
open to screening for caregiver burden at the ED and to
integrate caregiver needs into care transition plans, espe-
cially as caregiving is becoming more common.
Conclusion
We used a mixed methods approach to understand the
caregiver’s perspective regarding caregiver burden fol-
lowing a patient’s transition from the ED to home. Only
caregivers facing an increased self-reported burden
showed significantly different ZBI scores compared to
those with stable burden levels, which persisted even
when accounting for patient age and comorbidities.
Caregivers with greater initial burden may benefit most
from targeted interventions designed to support car-
egiving. Screening for high caregiver burden or burn-
out at the ED and involving caregivers in the goals and
trajectory of care can both inform tailored interven-
tions aimed at reducing individual caregiver burden and
enhance system-level policies that target improved care
transition processes. e most salient targets for reform
are the inadequacy in communications and follow-up
between healthcare settings along the care continuum,
and improving access to homecare and domestic help.
Addressing these unmet needs may improve the wellbe-
ing of both caregivers and those in their care following
emergency treatment.
Supplementary Information
The online version contains supplementary material available at https:// doi.
org/ 10. 1186/ s12877‑ 024‑ 05388‑1.
Supplementary Material 1.
Acknowledgements
We acknowledge the invaluable support of participating patients and their
caregivers. We also thank Lise Lavoie, David Buckeridge, Josée Chouinard, Yves
Couturier, Marie‑Soleil Hardy, Audrey‑Anne Brousseau, Éric Mercier, Clémence
Dallaire, Richard Fleet, Annie Leblanc, Don Melady, Marie‑Josée Sirois, Marcel
Émond, Josée Rivard, Isabelle Pelletier and Jean‑Louis Denis for their support
and expertise in planning and contributing to the LEARNING WISDOM project.
Network of Canadian Emergency Researchers
Patrick Archambault, MD, MSc1,2,4,5
Affiliations (taken from main list of affiliations on the title page)
1Centre de recherche intégré pour un système apprenant en santé et services
sociaux, Centre intégré de santé et services sociaux de Chaudière‑Appalaches,
Lévis, Québec, Canada
2Faculty of Medicine, Université Laval, Québec, Québec, Canada
4Commissaire à la santé et au bien‑être, Québec, Québec, Canada
5VITAM—Centre de recherche en santé durable, Québec, Québec, Canada
10Department of Family Medicine and Emergency Medicine, Université Laval,
Québec, Québec, Canada
Authors’ contributions
1. Study concept and design 2. Acquisition of the data. 3. Analysis and
interpretation of the data. 4. Drafting of the manuscript 5. Critical revision of
the manuscript for important intellectual content. 6. Statistical expertise. 7.
Obtained funding. 8. Administrative, technical, or material support. 9. Study
supervision. 1. NG, EJG, VC, MM, JR, ST, and PA conceptualized the study and
analysis. NS and provided content expertise in study design and outcome
selection. 2. ÉC, LA, RG, SC, ATF, JR, ST, RS, and PA collected and managed par‑
ticipant data. 3. NG, EJG, and PA conducted the analysis. 4. NG, and PA wrote
the first draft of the manuscript. 5. SS, NS, LB, LBC, FL, HOW, and PA. All authors
critically reviewed the manuscript and provided comments to improve the
manuscript. All authors read and approved the final manuscript. 6. RS, ST, LB,
and FL provided statistical and methodological expertise. 7. FL, HOW, and PA
obtained funding for this study. 8. ÉC, LA, RG, SC, ATF and JR, provided admin‑
istrative and technical support. 9. PA is the principal investigator.
Funding
The LEARNING WISDOM clinical trial was funded by an Embedded Clinician
Salary Award (ECRA) awarded to PMA from the Canadian Institutes for Health
Research (CIHR) (#201603), a Fonds de recherche du Québec – Santé (FRQS)
Senior Clinical Scholar Award (#283211), and a CIHR Project Grant (#378616).
Work on this article was supported by a Master’s Award: Canada Graduate
Scholarships Award (CIHR) awarded to NG (#202112). The funding bodies had
no role in the design of the study, collection, or analysis of the data, interpreta‑
tion of the results, or writing of the manuscript. The authors do not have any
conflicts of interest to declare.
Availability of data and materials
Anonymized data that support the findings of this study are available on
request from the corresponding author, [NG]. The data are not publicly avail‑
able as to protect the privacy of research participants.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.

Page 16 of 17
Germainetal. BMC Geriatrics (2024) 24:788
Declarations
Ethics approval and consent to participate
The protocol for this study was approved by the CISSS‑CA Ethics Review
Committee (project #2018–462, 2018–007). Caregivers had to be able to
understand French and provide informed consent. To demonstrate the capac‑
ity to provide informed consent, caregivers were required to summarize—in
their own words—their understanding of the study to consent to, based on
the Nova Scotia Criteria. Participants were also made aware that it would not
be possible to identify individual participants in the published results.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Author details
1 Centre de Recherche Intégrée Pour Un Système Apprenant en Santé Et
Services Sociaux, Centre Intégré de Santé Et Services Sociaux de Chaudière‑
Appalaches, Lévis, Québec, Canada. 2 Faculty of Medicine, Université Laval,
Québec, Québec, Canada. 3 VITAM ‑ Centre de Recherche en Santé Durable,
Québec, Québec, Canada. 4 Faculty of Science and Engineering, Université
Laval, Québec, Québec, Canada. 5 Department of Family and Community
Medicine, University of Toronto, Toronto, ON, Canada. 6 Depar tment of Medi‑
cine, University of Toronto, Toronto, Canada. 7 Department of Medicine, Sinai
Health System and University Health Network, Toronto, ON, Canada. 8 Depart‑
ment of Health Management, Evaluation and Policy, School of Public Health,
Université de Montréal, Montréal, Québec, Canada. 9 Department of Emer‑
gency Medicine, University Health Network, Toronto, ON, Canada. 10 Depart‑
ment of Family Medicine and Emergency Medicine, Université Laval, Québec,
Québec, Canada. 11 Centre de Recherche du CHU de Québec ‑ Université Laval,
Axe Santé Des Populations Et Pratiques Optimales en Santé, Université Laval,
Québec, Québec, Canada. 12 Canadian Association of Emergency Physicians,
Ottawa, ON, Canada.
Received: 23 April 2024 Accepted: 16 September 2024
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