Determinants of Caregiving Burden and Quality of Life in

Caregivers of Stroke Patients

Emily McCullagh, MRCP; Gavin Brigstocke, MBBS; Nora Donaldson, PhD; Lalit Kalra, PhD, FRCP

Background and Purpose—A large proportion of disabled stroke survivors live at home and are supported by informal
caregivers. Identification of determinants of caregiver burden will help to target caregiver interventions.
Methods—Data on patient, caregiver, and health and social support characteristics were collected prospectively over 1 year
in 232 stroke survivors in a randomized trial of caregiver training. The contribution of these variables to caregiver
burden score (CBS) and quality of life (QOL) measures at 3 months and 1 year was analyzed using regression models.
Results—Stroke patients had a mean age of 74⫾11 years, and 120 (52%) were men. The mean age of caregivers was
65.7⫾12.5 years, 149 (64%) were females, and 116 (50%) had received caregiver training. The mean CBS was 48⫾13
and 38⫾11 (score range of bad to good 88 to 22) and QOL score was 75⫾16 and 75⫾15 (score range of bad to good
0 to 100) at 3 months and 1 year, respectively. CBS and QOL correlated with each other and with patient (age,
dependency, and mood), caregiver (age, gender, mood, and training), and support (social services and family networks)
variables. Of these, only patient and caregiver emotional status, caregiver age and gender, and participation in caregiver
training were independent predictors of either outcome at 3 months. Patient dependency and family support were
additional independent predictors at 1 year. Social services support predicted institutionalization but not caregiver
outcomes.
Conclusion—Advancing age and anxiety in patients and caregivers, high dependency, and poor family support identify
caregivers at risk of adverse outcomes, which may be reduced by caregiver training. (Stroke. 2005;36:2181-2186.)
Key Words: caregivers 䡲 quality of life 䡲 rehabilitation 䡲 stroke 䡲 stroke management 䡲 stroke outcome

S troke rehabilitation has concentrated successfully on

patient-focused interventions to reduce severe disabil-
ity and institutionalization, which has resulted in increas-
ing the number of disabled patients being managed at
home.1,2 Recent years have seen increasing awareness of
the role of caregivers in the long-term management of
stroke patients, and there is growing literature on the
caregiving burden, poor caregiver outcomes, lack of care-
giver support, and equivocal success, with interventions
aimed at alleviating the caregiving burden.2–5 It is also
becoming clear that the emphasis in stroke rehabilitation
needs to shift from a patient-focused approach to a
combined patient- and caregiver-focused approach because
these individuals are central in preserving rehabilitation
gains and the long-term well-being of stroke survivors.4,5
However, the success of early attempts to support caregiv-
ers has been limited, largely because the determinants of
caregiving burden and the needs of caregivers remain
poorly understood.6 Little research has been devoted to-
ward understanding the complex and multilayered phe-
nomenon of caregiving, beyond patient dependence and
the emotional or psychological aspects of caregiving after
stroke.4 –10 Very few studies have investigated the interac-
tions between patient characteristics, caregiver attributes,
and support mechanisms, which eventually determine bur-
den of care and quality of life (QOL) experienced by
caregivers.11,12 Furthermore, literature on longitudinal
changes in caregiver perceptions of burden and QOL is
conflicting and suggests that these outcomes and their
determinants may vary between the acute and chronic
phases of stroke.8,12,13 There is no study that has system-
atically investigated how patient, caregiver, and support
determinants contribute to changing perceptions of care-
giver burden and QOL at different time points after stroke
in a large sample. This information is important because
strategies directed at caregivers are likely to be more
successful if they target modifiable determinants of the
caregiving burden and address specific caregiver needs.14
Knowledge of these determinants would also help to
identify caregivers most at risk of poor outcomes and
deliver specific interventions at the appropriate time.4,8 –10
The objective of this study was to identify patient, caregiver, and
support characteristics that influence caregiving burden, caregiver
QOL, and institutionalization in the first year after stroke.

Received April 15, 2005; final revision received June 15, 2005; accepted July 5, 2005.
From the Department of Stroke Medicine (E.M., G.B., L.K.), Guy’s, King’s, and St Thomas’s School of Medicine, King’s College, London, UK; and
the Department of Biostatistics (N.D.), King’s and St Thomas’s School of Medicine, King’s College, London, UK.
Correspondence to Lalit Kalra, Department of Medicine, Guy’s, King’s, and St Thomas’s School of Medicine, Denmark Hill Campus, Bessemer Rd,
London SE5 9PJ, UK. E-mail lalit.kalra@kcl.ac.uk
© 2005 American Heart Association, Inc.
Stroke is available at http://www.strokeaha.org DOI: 10.1161/01.STR.0000181755.23914.53

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at CORNELL UNIVERSITY on December 18, 2014
2182 Stroke October 2005

TABLE 1. Patient and Caregiver Characteristics, Including QOL and Caregiver Burden at 3
Months and 1 Year in 232 Patients Included in the Study
Score Range
Bad to Good Baseline 3 Months 1 Year
Patient characteristics

Mean age in years (SD) 74.2 (10.5)

Male gender (%) 120 (51.7)
Median premorbid RS (IQR) 6–0 0 (0–1)
Median BI (IQR) 0–20 9 (5–12) 18.5 (14–20) 20 (17–20)
Median RS (IQR) 6–0 4 (3–5) 2 (2–3) 2 (2–3)
Median Hospital Anxiety Score (IQR) 21–0 䡠䡠䡠 7.0 (4.0–8.0) 4.0 (3.0–5.0)
Median Hospital Depression Score (IQR) 21–0 䡠䡠䡠 5.0 (3.0–7.0) 3.0 (2.0–5.0)
Mean EQ-VAS Score (SD) 0–100 䡠䡠䡠 53.6 (21.1) 61.1 (19.8)
No. of patients institutionalized (%) 6 (3%)
Mortality over 1 year (%) 0
Caregiver characteristics

Relationship with patient

Spouse/partner (%) 164 (70.6)
Children (%) 53 (22.8)
Relative/friend (%) 15 (6.6)
Mean age in years (SD) 65.7 (12.5)
Male gender (%) 83 (35.8)
Caregiver training (%) 116 (50)
Median baseline RS (IQR) 6–0 0 (0–1)
Median Hospital Anxiety Score (IQR) 21–0 䡠䡠䡠 6.0 (5.0–8.0) 3.0 (2.0–5.0)
Median Hospital Depression Score (IQR) 21–0 䡠䡠䡠 4.0 (2.0–8.0) 2.0 (1.0–4.0)
Mean EQ-VAS Score (SD) 0–100 䡠䡠䡠 75.2 (16.0) 75.4 (15.2)
Mean CBS (SD) 88–22 䡠䡠䡠 48.2 (13.2) 38.3 (11.1)
IQR indicates interquartile range.

Methods
Subjects
The study was undertaken in stroke patients undergoing rehabilita-
tion and their caregivers participating in a randomized controlled
trial (RCT) of caregiver training on a stroke rehabilitation unit.14
Patients were included if they were independent in daily living
activities before the stroke (defined as Rankin score [RS] of 0 to 2),
medically and neurologically stable at the time of baseline assess-
ments, and expected to return home with residual disability (defined
as the need for supervision or physical assistance for core activities
of daily living). All participants were required to have caregivers
with no significant disability (defined as RS of 0 to 2) who were
willing and able to provide support after discharge from hospital. The
study was approved by the Bromley Research Ethics Committee.
Assessments
Data were collected prospectively for patient, caregiver, and support
characteristics. Baseline assessments were performed at the time of
inclusion into the RCT, which was within 10 days of stroke onset.
Patient data included age, gender, estimated premorbid modified RS,
and Barthel Index (BI) at the time of inclusion (Table 1).15 Patients
were graded as mild (BI score 15 to 20), moderate (BI score 8 to 14),
and severe (BI score 0 to 8) disability on the basis of initial Barthel
scores.16 Caregiver assessments included age, gender, relationship to
the patient, presence of any illness or disability, and 5D Euroqol
(EQ-5D) and the Euroqol Visual Analogue Scale (EQ-VAS)17 for
QOL. The number of caregivers participating in a structured training
program that provided basic nursing and personal care skills,
essential for the day to day management of disabled stroke survivors,
was recorded. Support characteristics included family support net-
work,18 community health input, and social services support. Data on
therapy provision were recorded prospectively by treating therapists.
Data on community health and social services use were collected at
3 and 12 months during patient assessment interviews using the
Client Service Receipt Inventory.19 The completeness and accuracy
of these data were verified against records of service providers.
Follow-up assessments were undertaken at 3 and 12 months after
stroke onset. Variables of primary interest were caregiver burden and
caregiver QOL, assessed using the caregiver burden score (CBS) and
Euroqol VAS scales, respectively. CBS measures general strain
(items 1 to 8), isolation (items 9 to 11), disappointment (items 12 to
16), emotional involvement (items 17 to 19), and environment (items
20 to 22), which together encompass important domains of the
caregiving burden.20 These items are all scored from 1 to 4 (not at all,
seldom, sometimes, often). The reliability, sensitivity, and various
aspects of validity have been established in stroke patients and
caregivers.20 Other measurements undertaken were institutionaliza-
tion, RS, and BI in patients and Hospital Anxiety and Depression
Scale (HADS)21,22 and EQ-5D/VAS in patients and caregivers. The
HADS is commonly used in stroke research and has been validated
against other instruments of emotional morbidity.22 It comprises 14
questions, of which half make up the anxiety subscale and half the
depression subscale. Response options include “not at all,” “occa-
sionally,” “quite often,” and “very often,” which are scored 0, 1, 2,
or 3. A higher number indicates a more negative response, and a
score of ⬎8 is considered indicative of need for further assessment.
Assessments were undertaken by a researcher not involved in
randomization or patient care. Patients and caregivers were inter-

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 McCullagh et al
viewed separately whenever possible; participants were encouraged
to self-complete questionnaires without prompts, but caregivers were
allowed to assist patients, if required.
Data Analysis
Descriptive data are presented as proportions, means, or medians as
appropriate. Patient, caregiver, and support characteristics were
correlated with CBS, caregiver Euroqol score, and patient institu-
tionalization at 3 months and 1 year. Because the domains of EQ-5D
(mobility, self care, usual activities, pain and anxiety, and depres-
sion) were replicated in other assessments (eg, Barthel, RS, HADS in
patients and HADS and CBS in caregivers), which were more
sensitive to change than EQ-5D, this measure was not used further in
analysis. Variables with Pⱕ0.10 and those that were considered
clinically relevant were investigated further by constructing multiple
regression models for 3 months and 1-year outcomes in 3 stages. In
the first stage, the independent effects of patient characteristics and
the extent to which these variables explained variation in outcomes
was assessed. In the second stage, caregiver characteristics were
added to the model and their impact on primary measures assessed
after adjusting for patient characteristics. In the third stage, the
independent effect on support characteristics was assessed after
adjusting for patient and caregiver characteristics.
Results
Complete data sets at 1 year were available for 232 (77%) of
the 300 stroke patients and their caregivers included in the
original study. Reasons for incomplete data included mortal-
ity (n⫽32), patients or caregiver unable or unwilling to
complete assessments (n⫽28), and incorrectly filled out or
illegible forms (n⫽8).
The mean age of patients was 74 years; half were men, and
all were independent before stroke (Table 1). The baseline BI
score for the majority of patients ranged between 4 and 14,
consistent with moderate to severe disability.16 Most patients
improved significantly by 3 months (median BI increased
from 9 to 18.5; P⫽0.013). By the end of 1 year, there were
further improvements in the BI, significant reductions in
patients’ anxiety and depression levels from median
HADS-A, and HADS-D scores of 7.0 and 5.0, respectively, at
3 months to HADS-A and HADS-D scores of 4.0 and 3.0 at
1 year (P⬍0.0001 for both), and improvements in QOL
(median EQ-VAS change from 54 to 61; P⫽0.0002). A total
of 226 (97%) patients were residents at home 1 year after
stroke.
The mean age of the caregivers was 65.7 years, who, on
average, were 10 years younger than patients (Table 1). More
than 90% of caregivers were immediate family members, and
nearly two thirds of caregivers were women, the majority of
whom were spouse or partner. Of these, 50% had received
formal training in caregiving during hospital rehabilitation of
the patient. Caregiver anxiety and depression levels of care-
givers reduced significantly between 3 months and 1 year
(P⬍0.0001 for HADS-A and HADS-D). CBS also decreased
significantly between 3 months and 1 year (48.2 versus 38.3;
P⬍0.0001). Caregiver EQ-VAS scores did not change sig-
nificantly between 3 and 12 months.
Frequent support from local family or friends was
avai1able for 69 of 232 (29%) subjects; 17 (8%) subjects had
no local family but were supported by family members living
in different towns.17 The majority of subjects, 146 of 232
(62%), were isolated in the community with limited informal
support from family or friends. Although all patients received
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Identification of Caregiver Needs 2183
TABLE 2. Support Characteristics of 232 Patients Included in
the Study
No. of Users (%) Mean Use (SD)*
Community health input
Family doctor, contacts 227 (97.8) 2.9 (3.2)
Physiotherapy, hr 66 (28.4) 52.1 (27.2)
Occupational therapy, hr 75 (32.3) 31.6 (27.5)
Speech and language therapy 133 (57.3) 5.2 (8.9)
Social services input
Personal care for ADL tasks, hr 86 (37.1) 282.5 (349.8)
Domiciliary ⬘sit in⬘ services, sessions 22 (9.5) 25.8 (33.4)
Day care center, sessions 40 (17.2) 18.6 (21.4)
*Means and SDs of input over the period of 1 year for users only.
ADL indicates activities of daily living.
some form of community support after discharge, there were
great variations in the type and the intensity of community
health and social services use between patients (Table 2).
Pearson correlations showed a significant inverse relation-
ship between caregiver burden and caregiver QOL
(r⫽⫺0.33; P⬍0.001). Caregiver burden at 3 and 12 months
correlated significantly with increased patient disability, anx-
iety, and depression. It also correlated positively with care-
giver anxiety and depression but showed significant reduction
after caregiver training (Table 3). There was no correlation
with patient or caregiver age, gender, or relationship to the
patient. Caregiver burden did not correlate with the family
support or no support but was greater in those receiving
therapy and day care input, probably reflecting the severity of
residual disability. Caregiver burden was less at 1 year in
patients receiving domiciliary care input. Caregiver QOL at 3
and 12 months correlated with the same patient and caregiver
variables as caregiver burden (Table 3). In addition, there was
a negative correlation between caregiver QOL and patient
and caregiver age and increasing burden of caregiving.
Institutionalization from home at the end of 1 year correlated
with severity of residual disability and patient anxiety and
depression but not with caregiver or support characteristics.
Multiple regression models showed that patient and care-
giver anxiety were the only significant independent determi-
nants of caregiver burden at 3 months and were equally
important and explained 50% of caregiver burden at this time
point (Table 4). At 1 year, caregiver depression and family
support or no support also became important independent
determinants of caregiver burden. Caregiver training had an
independent effect on reducing caregiver burden, regardless
of other patient and caregiver characteristics. Patient disabil-
ity, increasing age of caregiver, and lesser personal care input
from social services were independent determinants of insti-
tutionalization from home within 1 year of stroke. Indepen-
dent determinants of poor caregiver QOL at 3 months
included increasing caregiver age, male gender, and disability
(Table 4). By the end of 1 year, the patient disability and
caregiver depression became additional determinants of care-
giver QOL. Participation in caregiver training was associated
with better QOL at 3 months and 1 year. The addition of
caregiver characteristics nearly doubled the explanatory
2184 Stroke October 2005

TABLE 3. Significant Correlates of Caregiver Strain and Caregiver QOL

3 Months 1 Year

Caregiver Burden Caregiver QOL Caregiver Burden Caregiver QOL Institutionalization

Coefficient P Coefficient P Coefficient P Coefficient P Coefficient P

Patient characteristics
Age 䡠䡠䡠 ⫺0.26 0.0001 䡠䡠䡠 ⫺0.32 0.0001 䡠䡠䡠
Male gender 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠
BI ⫺0.18 0.007 0.18 0.007 ⫺0.15 0.028 0.18 0.01 ⫺0.57 0.0001
RS 0.25 0.0001 ⫺0.20 0.003 0.21 0.002 ⫺0.17 0.018 0.40 0.0001
Anxiety score 0.56 0.0001 ⫺0.15 0.028 0.56 0.0001 ⫺0.14 0.058 0.17 0.012
Depression score 0.45 0.0001 ⫺0.27 0.0001 0.50 0.0001 ⫺0.20 0.007 0.27 0.0001
Caregiver characteristics
Relationship with patient 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠
Age 䡠䡠䡠 ⫺0.34 0.0001 䡠䡠䡠 ⫺0.38 0.0001 䡠䡠䡠
Male gender 䡠䡠䡠 ⫺0.17 0.013 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠
Caregiver training ⫺0.22 0.001 0.28 0.0001 ⫺0.38 0.0001 0.28 0.0001 䡠䡠䡠
Anxiety score 0.61 0.0001 ⫺0.18 0.006 0.62 0.0001 ⫺0.23 0.001 䡠䡠䡠
Depression score 0.52 0.0001 ⫺0.22 0.001 0.62 0.0001 ⫺0.25 0.0001 䡠䡠䡠
CBS N/A ⫺0.26 0.0001 N/A ⫺0.32 0.0001 䡠䡠䡠
Support characteristics
Family support 䡠䡠䡠 ⫺0.16 0.034 䡠䡠䡠 ⫺0.21 0.007 䡠䡠䡠
Physiotherapy input 0.23 0.0001 䡠䡠䡠 0.24 0.0001 䡠䡠䡠 䡠䡠䡠
Occupational input 0.24 0.0001 ⫺0.16 0.021 0.26 0.0001 䡠䡠䡠 0.22 0.001
Speech and language therapy input 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠
Personal care 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠 䡠䡠䡠
Day care 0.20 0.002 ⫺0.15 0.026 0.25 0.0001 䡠䡠䡠 䡠䡠䡠
Domiciliary care 䡠䡠䡠 䡠䡠䡠 ⫺0.13 0.049 0.18 0.009 䡠䡠䡠

power of models for most caregiver outcomes. Addition of
support variables increased the prediction of institutionaliza-
tion significantly but did not add significantly to other
outcome models.
Discussion
This study showed that caregiver burden in the immediate
aftermath of stroke was determined by patient and caregiver
anxiety rather than by the level of disability, age, gender, or
support from family or social services. Caregiving burden and
patients’ and caregivers’ anxiety levels decreased with time,
despite no significant changes in patients’ dependence or
support levels, suggesting a response shift toward normaliza-
tion with time. At 1 year, caregiver depression and lack of
family support became additional determinants of the care-
giving burden. Institutionalization was determined by care-
giver age, patient disability and level of social services
support available. Caregivers had a better QOL compared
with patients, but unlike patients, their QOL did not improve
over 1 year. Caregiver QOL had a significant inverse core-
lationship with caregiver burden and correlated with the same
patient and caregiver variables as caregiver burden. In addi-
tion, caregiver QOL was adversely influenced by patient
disability and caregivers’ age, male gender, and physical
health. Social services support had little effect on caregiver
burden or QOL but reduced the need for institutional care.
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Training caregivers in the management of disabled patients
reduced caregiver burden and improved their QOL but had no
effect on institutionalization.
Caregiving is a complex and multidimensional activity,
the nature and determinants of which evolve over time.
The study showed that despite a significant interaction
between caregiver burden and caregiver QOL, there was a
divergence at the end of 1 year with improvements in
caregiver burden but not in caregiver QOL. This may be
explained partly by the limitations of current measures of
caregiver burden to capture the interactions between care-
giving burden and the supporting capacity of the caregiver,
which, if exceeded, may result in poorer QOL.23 Another
possible explanation is the transition in caregiver experi-
ence as caregivers adapt to their new role and factors such
as advancing age, level of disability, depression, and
family support become important. Studies have shown that
the awareness of a relative/loved one in ill health, chang-
ing roles, obligations, decreasing support, and changed life
perspectives are associated with feelings of inadequacy
and depression, which have adverse effects on QOL
unrelated to caregiving burden.24
A limitation of the study is that it was limited to willing
caregivers participating in a randomized controlled study.
Selection criteria would have excluded patients with severe
disability or cognitive impairments; most patients made
 McCullagh et al Identification of Caregiver Needs 2185

TABLE 4. Independent Determinants of Caregiver Burden and QOL

3 Months 1 Year

Caregiver Burden Caregiver QOL Caregiver Burden Caregiver QOL Institutionalization

Coefficient (95% CI) Coefficient (95% CI) Coefficient (95% CI) Coefficient (95% CI) Coefficient (95% CI)
Model 1 (patient variables)

Patient age NS ⫺0.4 (⫺0.7 to ⫺0.2) 0.1 (0.002 to 0.3) ⫺0.6 (⫺0.8 to ⫺0.3) NS
BI NS NS NS 1.9 (0.3 to 3.5) ⫺0.05 (⫺0.08 to ⫺0.01)
Patient anxiety score 1.6 (0.8 to 2.4) NS 2.2 (1.1 to 3.4) NS NS
r2 0.26 0.16 0.30 0.21 0.12
Model 2 (patient⫹caregiver variables)
Patient age NS NS NS NS NS
BI NS NS NS 1.6 (0.16 to 3.1) ⫺0.05 (⫺0.08 to ⫺0.02)
Patient anxiety score 1.1 (0.3 to 1.9) NS NS NS NS
Caregiver age NS ⫺0.3 (⫺0.6 to ⫺0.07) NS ⫺0.3 (⫺0.6 to ⫺0.1) 0.1 (0.02 to 0.2)
Caregiver gender (male) NS 7.4 (0.9 to 13.9) NS NS NS
Caregiver disability (RS) NS ⫺5.2 (⫺8.9 to ⫺1.5) NS ⫺6.1 (⫺9.7 to ⫺2.5) NS
Caregiver training NS 4.2 (0.8 to 9.1) ⫺2.9 (⫺5.9 to ⫺0.2) 2.5 (0.01 to 5.1) NS
Caregiver anxiety score 2.4 (1.5 to 3.3) NS 1.0 (0.1 to 1.8) NS NS
Caregiver depression score NS NS 1.1 (0.1 to 2.2) ⫺1.6 (⫺3.2 to ⫺0.02) NS
r2 0.49* 0.35* 0.47* 0.39* 0.18
Model 3 (patient⫹caregiver⫹support variables)

Patient age NS NS NS NS NS
BI NS NS NS 1.5 (0.1 to 3.1) ⫺0.08 (⫺0.12 to ⫺0.05)
Patient anxiety score 1.2 (0.4 to 2.1) NS NS NS NS
Caregiver age NS ⫺0.4 (⫺0.7 to ⫺0.1) NS ⫺0.3 (⫺0.6 to ⫺0.06) 0.1 (0.02 to 0.2)
Caregiver gender (male) NS 7.3 (0.6 to 13.9) NS NS NS
Caregiver disability NS ⫺5.9 (⫺9.7 to ⫺2.2) NS ⫺6.3 (⫺9.9 to ⫺2.6 NS
Caregiver training NS 4.3 (0.8 to 9.4) ⫺3.0 (⫺6.2 to ⫺0.2) ⫺2.6 (⫺5.3 to ⫺0.03) NS
Caregiver anxiety score 2.4 (1.5 to 3.4) NS 1.0 (0.2 to 2.1) NS NS
Caregiver depression score NS NS 1.2 (0.03 to 2.3) ⫺1.1 (⫺2.8 to ⫺0.6) NS
Family support NS NS 1.6 (0.4 to 2.9) NS NS
Social services support NS NS NS NS ⫺0.001 (⫺0.002 to ⫺0.99)
r2 0.51 0.41 0.50 0.41 0.34*
*Significance of change in F value P⬍0.001.

significant physical recovery, and all caregivers were in good
health. This may explain why variables such as patient
disability, cognitive impairments, and patients’ or caregivers’
health, found to be significant in studies on caregivers of
severely disabled patients,4,9,13,25 were not independent pre-
dictors of caregiver burden in this study. These factors make
substantial difference in the level of caregiving burden and
need to be considered in caregiver risk assessment. A weak-
ness of the study is that the number of patients who required
help from caregivers to fill in questionnaires was not rec-
orded. Similar methods have been used previously and are
often necessary in pragmatic studies in disabled subjects.26 –28
Despite the fact that all patients received appropriate levels of
community and social services input at discharge based on
objective assessments during rehabilitation, patients’ and
caregivers’ perceptions of adequacy of this support may have
influenced caregiver burden as well as caregiver QOL but
was not measured in this study.
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Anxiety and depression are common in stroke patients and
their caregivers and determine caregiving burden.4,7,8 –10,13
Studies show that social services support or interventions
aimed at the emotional support of caregivers have little effect
on reducing this burden.12,26 –29 However, “hands on” training
in the day to day management of stroke patients was
associated with lower anxiety and burden of care levels.14
This suggests that a shift in rehabilitation philosophy for a
patient-centered approach to a patient- and caregiver-centered
approach, which empowers caregivers, may have better
long-term outcomes. It is also important that assessments of
rehabilitation interventions in clinical practice or research
include measures of patient and caregiver outcomes in eval-
uating effectiveness. Whereas considerable advances have
been made in the development of patient-centered measures,
there are no instruments at present that reliably capture all
important dimensions of the caregiving experience.23 It is
possible a self-rated instrument, in which the domains are
2186 Stroke October 2005
determined by caregivers themselves, may provide more
relevant information than existing instruments.23
Caregiving is a multilayered concept and involves several
aspects of human behavior, which cannot be encapsulated in
simplistic models based on measurable physical, psycholog-
ical, or social variables. Despite a range of patient, caregiver,
and support variables being considered in this study, regres-
sion models could not predict ⬎50% of caregiver outcomes.
Other quantitative and qualitative studies have shown similar
limitations in developing paradigms that accurately predict
caregiver needs. Although caregiving will always be influ-
enced by a range of subjective factors (eg, coping ability,
personal beliefs, and social expectations), clinicians need
some objective measures to identify those at risk of adverse
outcomes. This study suggests that high physical dependence,
advancing age, and increased anxiety in caregivers or patients
and poor family support are simple and easily assessable
measures of caregiver risk, which can be used in clinical
practice to target caregiver interventions.
Acknowledgments
The project was supported by the NHS R&D Executive’s Primary
Secondary Interface Priority Programme (Project No. F-4/1997).
References
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Determinants of Caregiving Burden and Quality of Life in Caregivers of Stroke Patients
Emily McCullagh, Gavin Brigstocke, Nora Donaldson and Lalit Kalra

Stroke. 2005;36:2181-2186; originally published online September 8, 2005;

doi: 10.1161/01.STR.0000181755.23914.53
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