From the Neurosciences Trials Unit, Department of Clinical Neurosciences,
The University of Edinburgh, Scotland.
Methods—As part of a randomized trial to evaluate a stroke family
care worker, we identified 417 patients (67% of all referrals to our
institution). We followed up 376 survivors of whom 246 identified a
caregiver at a 6-month follow-up interview. The patients and caregivers
were asked to complete 2 measures of emotional distress (30-item
General Health Questionnaire [GHQ-30] and Hospital Anxiety and
Depression [HAD] Scale). A regression analysis was used to
identify factors that were independently associated with poor caregiver
outcomes.
Results—Fifty-five percent of responding caregivers scored more
than 4 on the GHQ-30, indicating that emotional distress is common in
this group. Caregivers were more likely to be depressed if the patients
were severely dependent (P<0.01) or emotionally
distressed themselves (P<0.01). Female caregivers
reported more anxiety (median HAD=8) than male caregivers (median
HAD=5; P<0.01) but caregivers' levels of anxiety were
not so clearly related to the patients' degree of physical disability
as their levels of depression. Caregivers suffered more emotional
distress if the patients had been dependent before their strokes.
Conclusions—These data may help to identify those caregivers at
greatest risk of poor emotional outcomes and thus help in the planning
of trials and delivery of interventions aimed at preventing or treating
distress among caregivers.
Previous studies have documented the physical burden placed on stroke
caregivers and the impact that this may have on their physical and
psychological well-being.1 2 3 4 Carnwath and
Johnson3 found that spouses of stroke patients,
especially of those who were dependent, were more likely to have
symptoms of depression than age- and sex-matched control subjects from
the same community. Two community-based studies found that caregivers
were often anxious and depressed and were limited in their social
activities. However, the frequency of these problems differed
considerably because one study2 included all
those living with patients, whereas the other4
was restricted to those living with dependent survivors.
After it had been established that problems among caregivers are
common, some studies described and evaluated interventions designed to
prevent or alleviate these problems.5 6 One
difficulty in planning such studies is the lack of quantitative data
regarding the outcomes of caregivers that were measured using valid and
reliable measures. Without these data, and some idea of the likely
treatment effect, it is impossible to estimate the numbers of
caregivers required to demonstrate a worthwhile benefit. It is also
unclear which caregivers are at greatest risk of adverse emotional
outcomes and therefore which are likely to have the most to gain from
any effective intervention. This study aimed to describe the outcome of
a large group of persons identified by stroke patients as their
caregivers and to identify those characteristics of both patients and
caregivers that are associated with a poor emotional outcome.
Patients were asked to identify a main caregiver whom we contacted and
asked to complete a questionnaire during the follow-up visit that
included the GHQ-30. To avoid overburdening the caregiver at the first
visit, another questionnaire that included the HAD was left with the
caregiver to be completed and returned later. We only included informal
caregivers (ie, a spouse, family member, or friend), not, for example,
a member of nursing home staff.
Analyses
Status of Patients for Whom We Successfully Collected Information
on Caregivers
Characteristics of Caregivers
Status of Caregivers 6 Months After Stroke
Predictors of Caregivers' GHQ-30
Regression Analyses
Predictors of Caregivers' HAD
There was a statistically significant, although only modest,
association between the patients' Barthel Index score and the
caregivers' HAD depression subscale score (slope of regression line,
-0.19; P=0.01) and little association with the HAD anxiety
subscale score (slope of regression line, -0.12; P=0.2).
However, patients' dependency in feeding, ambulation, dressing,
toileting, making transfers, and the presence of urinary incontinence
were all significantly associated (P<0.05) with worse
scores on the HAD depression subscale. Patients who were dependent in
the other activities included in the Barthel Index had higher scores on
the HAD depression subscale, but these were not statistically
significant. The caregivers' scores on the HAD anxiety subscale were
only significantly worse for caregivers of patients who were dependent
in dressing (P<0.01) compared with caregivers of those who
were independent. There were only small differences in anxiety scores
between caregivers of those who were dependent and independent in other
activities of daily living. The patients' scores on the Frenchay
Activities Index was significantly but not strongly related to the
caregivers' scores on the HAD depression subscale (slope of regression
line, -0.23; P<0.01) but not for the anxiety subscale
(slope of regression line, -0.10; P=0.08). The results of
our regression analyses with respect to the HAD are summarized
(with those relating to the GHQ-30) in Table 6
Previous studies have reported various rates of emotional distress in
caregivers (13%2 to 39%3
for depression), probably reflecting variations in methods (Table 2
We know little about the changes that may occur with respect to the
caregivers' emotional state over time. Some have suggested that
caregivers go through stages of adjustment (ie, crisis, treatment
stage, realization, and adjustment), implying that their emotional
state may evolve.15 In this study we described
their outcome at only 1 point in time. One study3
suggested that depression among caregivers became more common as more
time elapsed after the stroke, although theirs was a cross-sectional
study. Our finding that the patients' prestroke dependency and the
fact that they had had a previous stroke both had independent
associations with the caregivers' mood beyond that of the patients'
dependency at 6 months supports the idea that the duration of caring
for a dependent person may be important. Using the Wakefield
scale, Wade et al2 tried to assess caregivers
serially over 2 years, although the proportion of caregivers who
completed the questionnaires varied considerably over this period
(224/393, 57%, at 6 months; 235/302, 78%, at 1 year). At 6
months, 45 (20.1%) of 224 caregivers were depressed (Wakefield
>14); at 1 year 57 (24.3%) of 235 were depressed, and at 2 years 31
(23.1%) were depressed. However, the variable rates of completion
for the measures of mood over the follow-up period may have obscured
any trend for depression to become more or less common.
Our findings, and those from previous studies, may be useful to
researchers who are planning randomized trials to evaluate
interventions aimed at improving caregiver outcomes. They suggest that
emotional distress is common among those caring for patients who have
suffered a stroke and that it is predominantly the caregivers of
patients with poor physical and emotional states who are likely to have
poor emotional outcomes themselves. Although studies in caregivers' of
patients with dementia have suggested that patients' cognitive
function and continence are particularly important in determining their
caregivers' emotional well-being, in this study we could not
distinguish the effects of these impairments or disabilities from
others.
Our regression models only explained a small proportion of the variance
in mood scores, so that many caregivers will have a poor outcome even
if these factors are not present. Thus, a caregivers' emotional
status is likely to also depend on other factors, such as their
personality and environment, which we did not measure in this study.
Patients with poor physical and emotional states are likely to attract
more health and social service resources than those with better
outcomes. These resources should also be targeted at their caregivers.
The finding that the duration of caring may be important needs to be
confirmed but suggests that follow-up of the patient and caregiver in
the community may need to be prolonged.
Received May 19, 1998;
revision received June 19, 1998;
accepted June 19, 1998.
© 1998 American Heart Association, Inc.
Original Contributions
A Quantitative Study of the Emotional Outcome of People Caring for Stroke Survivors
Abstract
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Background and Purpose—Although
the physical and, to a lesser extent, emotional outcome of stroke
survivors has been well documented, there are far fewer data relating
to the outcomes of those who care for them. We aimed to describe the
outcome of those caring for stroke patients and to identify both
patient and caregiver factors that are associated with poor
caregiver outcomes.
Key Words: stroke • caregivers • outcome • depression • anxiety • mood disorders
Introduction
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Stroke patients who survive the acute illness and are
discharged from the hospital frequently depend on informal caregivers
for practical and emotional support. Although the physical and, to a
lesser extent, emotional outcome of patients has been well documented,
there are far fewer data relating to the emotional outcome of those
caring for stroke patients. The well-being of caregivers is important
because the patients depend on these people to maintain them in the
community.
Subjects and Methods
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
We identified stroke patients as part of a randomized trial to
evaluate the effectiveness of a stroke family care
worker.5 This trial had broad entry criteria and
included 417 patients (67% of all referrals) assessed within 30 days
of a stroke at a teaching hospital over a 2-year period. The main
reasons for exclusion were as follows: (1) residence more than 25 miles
from the hospital, (2) low probability of surviving more than a few
days, and (3) additional nonstroke illness that would dominate patient
care (eg, chronic renal failure or advanced malignancy). Baseline data
were collected just before randomization. We followed up surviving
patients at 6 months, usually in their own homes, and asked them to
complete a questionnaire including the Modified Rankin
Scale,7 the Hospital Anxiety and Depression Scale
(HAD),8 and the General Health
Questionnaire–30-item version (GHQ-30),9 as well
as the Barthel Index10 and Frenchay Activities
Index.11
We first described the distribution of scores on the measures
listed above using nonparametric statistics. Second, we
compared the scores on these measures in caregivers who differed in
terms of certain patient or caregiver characteristics using the
Wilcoxon 2-sample test. Third, we calculated Spearman
correlation coefficients for the scores on measures that were given to
both patients and their caregivers at the 6-month follow-up. Last, we
performed standard forward regression analyses to identify the
independent contribution of each of the variables that we had
identified in our univariate analysis.
Results
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Selection of Caregivers
Of the 417 patients randomized, 41 (10%) died before follow-up, 2
refused follow-up, 1 emigrated, and 1 was found to have a brain tumor
and not a stroke. We identified 246 with caregivers. Of the 246
caregivers, 13 (5%) refused follow-up and 2 were not assessable
because of cognitive problems. Two-hundred thirty-one caregivers (94%)
returned the first questionnaire, and 222 (90%) returned the second.
Inevitably, some of their responses were incomplete, which accounts for
the variable numbers for which we had complete data (Table 1
). Although data were incomplete, this
was due mainly to caregivers overlooking individual questions or
turning over 2 pages at once. It seemed unlikely that this would have
introduced significant bias. To verify this, we compared the baseline
characteristics of the 229 patients whose caregivers completed 1 or
more measures with the 17 who completed none and also the caregivers
who did (n=187) or did not (n=59) complete the GHQ-30. The only
significant differences were in the patients' smoking habits (96/229
versus 1/17; P<0.01) and the proportion of patients with a
prior disabling stroke (21/187 versus 1/59; P=0.03).
View this table:
[in a new window]
Table 1. Completion Rates for Caregiver Questionnaires and
Caregiver Outcomes
(n=231)
Twenty-two patients (10%) had had a previous disabling stroke,
and 15 (7%) were dependent in everyday activities (modified Rankin
score 
3) before the index stroke. Of the 231 patients with caregivers
who responded to our first questionnaire, 29 (13%) had a total
anterior circulation syndrome, 89 (41%) had a partial anterior
circulation syndrome, 61 (28%) had a lacunar syndrome, 40 (18%) had a
posterior circulation syndrome, and 12 were
undefined.12 Ninety-nine (43%) of the 228
patients with known outcomes were dependent (modified Rankin score 3)
at follow-up. Sixty-two (27%) were unable to walk independently, 36
(16%) had some degree of urinary incontinence, 11 (5%) were fecally
incontinent, 30 (13%) needed help with transfers, 59 (26%) with
stairs, 29 (13%) with toileting, 85 (37%) with bathing, 58 (25%)
with feeding, 65 (29%) with dressing, and 28 (12%) with grooming.
Their median Barthel Index (available for 227) was 19 (interquartile
range, 17 to 20) and their median Frenchay Activities Index (available
for 171) was 48 (interquartile range, 43 to 52). We had no measure of
behavioral problems.
The mean age of the caregivers was 60 years (range, 27 to 88
years), and 66% were women. One-hundred eighty-two (79%) were
spouses, 32 were children of the patients (including in-laws), and the
remaining 15 (7%) were siblings, parents, or friends. Most of the
caregivers (n=208, 91%) were living with the patient.
The median scores (interquartile ranges) for each of our measures
of caregiver outcome are shown in Table 1
. In this sample, 102
caregivers (55%) scored more than 4 (the recommended cutoff is
4/59) on the GHQ-30, indicating a likelihood of
greater than 50% of them having a diagnosable psychiatric disorder. If
one applies the recommended cutoff of 8/9 for the HAD subscales, 33
(17%) and 69 (37%) of caregivers were depressed or anxious,
respectively (Table 2).
View this table:
[in a new window]
Table 2. Summary of Studies of Caregiver
Outcome
We examined the associations between the caregivers' emotional
status at 6 months with respect to their own characteristics and those
of the patient at baseline. The results of these univariate
analyses for the caregivers' GHQ-30 are shown in Tables 3 and 4. This indicated
that prestroke handicap (P<0.01) and the presence of a
visual field defect (P=0.04) were significantly associated
with more emotional distress in the caregivers. However, it is apparent
that there was a consistent but statistically nonsignificant
trend for caregivers of patients with symptoms, suggestive of a more
severe stroke and thus a greater likelihood of disability at 6 months,
to have more emotional distress. Thus, one might predict that
caregivers of patients with worse functional outcomes at 6 months would
themselves have poor outcomes. Table 5
shows the median values of the caregivers' GHQ-30 depending on the
patients' modified Rankin score at 6 months. This demonstrates quite
clearly that caregivers of patients with more disability at 6 months
have significantly worse emotional outcomes. The association between
the patients' Barthel Index and the caregivers' GHQ-30 was less
apparent (slope of regression line, -0.25; P=0.1. This was
probably due to the well-recognized ceiling on the Barthel Index that
resulted in a large number of patients scoring 20/20. However,
patients' dependency in any of the 10 activities of daily living
included in the Barthel Index were associated with worse scores on the
caregivers' GHQ-30 and were statistically significant
P<0.05 for all except grooming, bowel function, and
toileting. We could not identify any single disability that was
associated with greater distress in the caregiver. The patients' score
on the Frenchay Activities Index was significantly, but not strongly,
related to the caregivers' GHQ-30 (slope of regression line, -0.25;
P<0.01). Interestingly, the patients' and caregivers'
scores on the GHQ-30 at 6 months were positively correlated, although
the relationship was not very strong (Spearman correlation=0.38;
P<0.01). We did not have any direct measure of patients'
cognitive ability at the 6-month follow-up. However, we took the
patients' ability or inability to complete the GHQ-30 as a surrogate
measure of cognition. Those caregivers of patients who were unable to
complete the GHQ-30 (n=25) generally had worse scores than the
remainder on the GHQ-30 (median 9.0 versus 5.0), but this difference
was not statistically significant (P=0.2).
View this table:
[in a new window]
Table 3. Univariate Associations Between Patient Baseline
Characteristics and Caregiver Score on GHQ-30 at 6 Month
Follow-Up
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[in a new window]
Table 4. Univariate Associations between Caregiver
Characteristics and Caregiver Score on GHQ-30 at 6
Months
View this table:
[in a new window]
Table 5. Caregiver Outcomes (Medians) Depending on Patient
Modified Rankin Scale Score at 6-Month
Follow-Up
We modeled the caregiver GHQ-30 score using the caregivers'
age and sex and whether they lived with the patient (cohabitation) as
explanatory variables; we used the following variables for the
patient: age, previous stroke, prestroke modified Rankin scale score,
living alone before stroke, employed before stroke, cigarette smoking
within 12 months of the stroke, Glasgow Coma Score (verbal score),
visuospatial dysfunction, visual field defect, arm power, and ability
to walk (all at baseline assessment). From forward selection,
caregivers had worse scores on the GHQ-30 at 6 months if the patient
had a visual field defect at baseline or if they had a modified Rankin
score before the stroke of 3 to 5, confirming the results of our
univariate analyses. Once these terms had been
entered into the model, no other baseline terms were significant, but
these 2 terms only explained 5% of the observed variance in GHQ-30
score (ie, R2=0.05). Then the patient's
modified Rankin scale and GHQ-30 scores at 6 months were considered for
inclusion into the model. This resulted in the patient GHQ-30 score at
6 months being included (R2=0.14), so that
14% of the variance in caregiver GHQ-30 score was explained. Because
certain patient baseline factors (ie, visual field defects and
prestroke function) were likely to predict the patients' functional
status at 6 months, we wondered whether a model that included the
patients' 6-month modified Rankin scale score might explain more of
the variance in caregiver outcome. We repeated our modeling, first
entering the patients' modified Rankin and GHQ-30 scores at 6-month
follow-up. This resulted in a model that explained 12%
(R2=0.12) of the variance in the
caregivers' GHQ-30 score. Two baseline terms that were of borderline
statistical significance and appeared to add to the predictive power of
this model were the patients' prestroke modified Rankin scale score
(P=0.055; R2=0.13) and being
female (P=0.059; R=0.13). The former raises the
question of whether the chronicity of disability is important in
influencing the caregivers mood. Including both of these terms
increased the percentage of variance explained to 15%.
We also examined the relationships between the variables
shown in Tables 3 and 4 and the caregivers' HAD at 6 months.
Univariate analysis showed that caregivers of
patients who were dependent before the stroke had worse outcomes with
respect to both anxiety and depression than those of previously
independent patients (P<0.002). Older caregivers were more
depressed on the HAD depression subscale (median 5 versus 4;
P<0.01). Female caregivers scored worse on the HAD anxiety
subscale than their male counterparts (median 8 versus 5;
P<0.01). Caregivers of patients who had had a previous
stroke were more depressed according to the HAD subscale (median 6
versus 4; P=0.01). Those caregivers of patients with
symptoms of more severe strokes (ie, cognitive problems, inability to
walk) had significantly worse scores on the HAD depression
subscale. and are similar to the results of the
univariate analyses.
View this table:
[in a new window]
Table 6. Results of Regression
Analyses
Discussion
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
In this study we have described the emotional outcome of
caregivers of patients who had suffered a stroke 6 months earlier.
Several methodological points have to be considered when interpreting
our data. First, the patients were identified as part of a randomized
trial and therefore may not be typical of stroke patients in general.
However, 67% of referred patients were entered into this trial, and
the main reasons for exclusion were that they lived outside our
catchment area or were expected to die soon after the stroke. These
factors are unlikely to have biased our results, but one must not
overlook other selection pressures such as the original reason for
referral to our hospital and refusal to complete or incomplete
responses to questionnaires by caregivers. We adopted a definition of a
caregiver that did not stipulate that the patients required physical
help, so some caregivers may not have been responsible for much actual
physical caregiving. We were not able to identify a suitable control
group, so we cannot comment on whether our caregivers had different
outcomes than caregivers of other types of patients or indeed than
noncaregivers in the general population. For instance, our finding that
female caregivers had higher levels of anxiety on the HAD subscale
probably reflects a general difference between the sexes in the
frequency of reported symptoms of anxiety.14
Finally, we examined the association between a large number of baseline
and outcome variables. It is therefore possible that we might have
obtained spurious results because of multiple testing. However, we
found fairly consistent associations between the patients'
level of disability and emotional state and the emotional distress of
their caregivers. ).
Generally, the caregivers of more dependent patients (Barthel Index)
have more distress.2 3 Anderson and
colleagues4 demonstrated a nonsignificant trend
for more distressed caregivers to be caring for more dependent,
confused patients with more behavioral problems. We confirmed that
caregivers of more severely disabled patients had more distress,
although interestingly their level of anxiety did not seem to be
related to the patients' level of dependency. Importantly, the
caregivers' emotional outcome (both depression and anxiety) was
associated with the patients' emotional status, a finding
consistent with previous studies.2 3 We
assume that the patient influences the caregiver's well-being,
although the converse is possible.
Acknowledgments
This research was supported by grants from the Scottish Office
Home and Health Department, Chest Heart and Stroke Scotland, and
Medical Research Council (UK).
References
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
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