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From the Department of Social Medicine (W.J.M.S. op R., P.T.R., G.A.M.
van den B.), the Department of Clinical Epidemiology and Biostatistics (R.J.
de H.), and the Department of Neurology (M.L.), Academic Medical Center,
University of Amsterdam, the Netherlands.
Methods—As part of a multicenter study on quality of care, burden
of caregiving was assessed in 115 partners at 3 years after stroke.
Explanatory factors of burden were studied in terms of (1)
characteristics of patients (sociodemographic status, severity, type,
and localization of stroke, disability, handicap, and unmet care
demands) and (2) characteristics of partners (age, sex, disability,
quality of life, loneliness, amount of care provided, and unmet care
demands).
Results—Partners of stroke patients perceived most caregiving
burden in terms of feelings of heavy responsibility, uncertainty about
patients' care needs, constant worries, restraints in social life, and
feelings that patients rely on only their care. Multiple regression
analysis revealed that a higher level of burden could partly be
explained by patients' disability
(R2=14%), but primarily by partners'
characteristics in terms of emotional distress
(R2=16%), loneliness
(R2=6%), disability
(R2=3%), amount of informal care provided
(R2=2%), unmet demands for psychosocial
care (R2=4%), and unmet demands for
assistance in activities of daily living
(R2=2%).
Conclusions—Higher levels of burden are primarily related to
partners' emotional distress and less to the amount of care they
provided, or to patients' characteristics. Sharing responsibilities,
helping to clarify the patients' needs, and getting occasional relief
of caregiving may be important in the support of caregivers.
Initial gains in rehabilitation are more effectively maintained
if the family is healthy, involved, and
supportive.9 10 Various interventions have been
developed to support family members and to improve their involvement in
the care process, such as visits by a specialist outreach nurse,
long-term counseling, and a stroke family care
worker.11 12 13 However, clear evidence of
substantial benefit of these interventions is lacking. Several
explanations are possible, such as outcome assessment performed too
early, use of insensitive outcome measures, or not addressing the most
relevant problems. Global measures of psychological health have often
been used to study caregivers' burden.7 8 14
Although a global measure may identify the level of burden, more
specific measures are needed to display the most relevant
caregiving-related problems to yield guidelines for the development of
effective, supportive treatment strategies.14
Several studies have investigated the influence of either patient or
caregiver characteristics on caregiver burden. The burden of caregiving
can only be partly predicted from stroke severity or patient's
dependency in performance of daily
activities.7 Characteristics of caregivers
themselves are also important,8 12 and include
physical and psychosocial health problems.15 16 17
Furthermore, partners' perception of support from professional care
services will likely influence the level of their burden of caregiving.
To the best of our knowledge, the relative contributions of both
patients' and caregivers' characteristics to the burden of caregiving
have not been described. Although it is expected that caregivers'
burden increases over time, few studies have observed long-term
consequences of informal caregiving.7 8
We studied the level and the specific nature of the burden of
caregiving in partners of patients 3 years after stroke. Furthermore,
we examined the relative contributions of various patient and partner
characteristics to the level of burden of partners. Knowledge of these
explanatory variables may be useful for identification of
caregivers at risk for high levels of burden and may enhance the
understanding of how caregivers' burden can be alleviated best, either
by specific care for the patient or by providing support and relief for
caregivers.
Of 371 patients surviving 3 years, 38 (10%) were lost to follow-up and
104 (28%) were institutionalized. Of the remaining 229
noninstitutionalized patients, 173 (76%) lived together with a
partner. Fifty-two of these 173 partners (30%) refused to participate
for various reasons (no time, too ill, not interested). No differences
were found between participating and nonparticipating partners with
unpaired t tests for the following patient characteristics:
sociodemographic characteristics (age, sex, and level of education),
clinical characteristics (severity, type, and localization of stroke),
functional health (disability in activities of daily living [ADL]),
and disability in instrumental activities of daily living [IADL], and
handicap). Of the 121 participating partners, 115 (96%) completed the
questionnaire on caregiving burden with <10% missing values.
Procedure of Data Collection
Measures
Characteristics of Patients
Characteristics of Partners
Burden of Caregiving
Statistical Analyses
Explanatory Factors of Burden of Caregiving
Characteristics of Partners
The results of the multiple linear regression analysis to
explain burden of caregiving are presented in Table 4
Some caution is needed in interpreting the results. First,
generalization of our findings may be affected by the selection of
patients who had been hospitalized. In the Netherlands approximately
70% of all stroke patients are admitted to the
hospital.29 Since hospitalized patients have
shown to be patients with more severe
strokes,29 30 a community-based study might have
revealed lower levels of caregiving burden. Second, generalization may
be affected by selection bias caused by nonresponse (52 partners,
30%). We did not observe this type of selection bias on the basis of
patients' characteristics. As we do not have data on nonparticipating
partners, however, selection bias cannot be completely ruled out,
particularly considering the fact that some partners declined to
participate because they felt too ill. Third, it should be noted that
our study group consisted of partners who have been able to continue
caregiving for 3 years after stroke. The need to relieve the
family of caregiver responsibility has been found to be a reason for
institutionalization of stroke patients.30
Earlier data collection, ie, after discharge, might have revealed
higher levels or other types of burden.6 8 More
research is needed on the dynamic aspects of caregiving. Fourth,
although the psychometric properties of the SCQ have been found to be
good,27 28 further research is needed to evaluate
its subscales as independent measures. Last, since no reference data of
the open population on caregiving burden are available, it is difficult
to interpret the specific impact of a stroke on the burden of
caregiving thereafter. Comparison with results of studies in other
patient groups may help to clarify specific disease-related caregiving
burden.
Studies among caregivers of dementia patients showed a largely
comparable level and type of burden. Differences in type of burden are,
however, greater uncertainty about the patients' care needs among
partners of stroke patients and more relational and interaction
problems among caregivers of dementia
patients.27 31 32 We observed an association
between patients' disability in IADL and caregivers' burden. This
association was also found in other stroke
studies,8 17 but was less clear in
dementia.27 32 These findings confirm the
expectation that compared with dementia, physical health problems in
stroke are more often present and severe, and therefore have
greater influence on caregivers' burden.31
Multivariate analysis did not reveal a
relationship between patients' handicap and caregivers' burden.
Studies including more specific measures of psychosocial health,
however, did reveal a relationship between stroke patients'
psychosocial health and caregivers' burden.7 9
To identify the impact of patients characteristics on caregiving
burden, future research needs to include both physical and more
specific psychosocial measures. Partners' disability in IADL also
appeared to be related to burden of caregiving. However, studies among
caregivers of dementia patients did not demonstrate a relationship
between caregivers' physical problems and the burden of caregiving
they perceived.27 32 When the differences in
health problems of dementia patients (ie, behavioral problems) and
stroke patients (ie, physical disability) are considered, caregivers'
physical health problems may become important when patients need
assistance in the basic activities of daily living, such as getting out
of bed.
It has been assumed that partners who provide more care (objective
burden) will experience a higher amount of burden (subjective
burden).33 34 Although "the consequences of
involvement in care for the personal life of the caregiver" (subscale
3) was primarily explained by the actual amount of care provided, we
could only demonstrate a minor association between the actual amount of
care provided and the total level of perceived caregiving burden.
Caregivers' emotional status showed to be more important in explaining
perceived burden. Moreover, research by others has shown that
caregivers not only experience burden, but also may experience gain as
a result of caregiving, including pride, gratification, and feeling
closer to their partners.35
Our findings may have several implications for the practice of care for
stroke patients and partners. They may help to identify partners who
are at greatest risk of high levels of burden. As expected, our results
demonstrate that partners of severely disabled patients perceive high
levels of burden, but even more important risk factors of burden are
functional health problems, especially psychosocial problems, in
partners themselves. Furthermore, our findings showed that caregiving
burden in partners of stroke patients was particularly perceived in
terms of feelings of heavy responsibility, uncertainty about patients'
care needs, constant worries, restraints in social life, and feelings
that patients rely on only their care. We also found this specific type
of burden at 6 months after stroke.28 Sharing
responsibilities, helping to clarify the patients' needs, getting
occasional relief of caregiving, and paying attention to the partners'
feelings may be important in the support of caregivers. Partners
themselves indicated specifically the need for more psychosocial
support, especially if they feel dissatisfied about the patients'
behavior.
This study indicates that while the contribution made by relatives of
stroke patients to their care is substantial, this does not happen
without consequences for their own health and interference with their
overall lives. It is important that professional caregivers involved in
the ongoing care of stroke survivors and their families, be aware of
the increasing demands made on caregivers and the specific problems
they perceive in caregiving. Appropriate advice and support may
preserve informal caregiving, which eventually enables patients to live
for a longer period in the community.
Received January 9, 1998;
revision received May 4, 1998;
accepted May 4, 1998.
© 1998 American Heart Association, Inc.
Original Contributions
The Burden of Caregiving in Partners of Long-Term Stroke Survivors
Abstract
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Background and Purpose—Few data are
available on the specific caregiving-related problems of stroke
patients' caregivers and factors that influence the burden of these
caregivers. The aim of this study was to describe the level and
specific nature of the burden of caregiving as experienced by stroke
patients' partners and to estimate the relative contribution of
patient and partner characteristics to the presence of partners'
burden.
Key Words: caregivers • stress, psychological • stroke management
Introduction
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Stroke is one of the
most disabling chronic diseases.1 2 3 4 The majority
of patients live in the community, frequently using long-term
professional care.1 5 6 Most care, however, is
provided by relatives, primarily partners.6 While
these caregivers themselves have to cope with the devastating effects
that stroke had on their partner, an increasing amount of demands is
made on them. They need, for example, to provide emotional support or
assist the patient in activities of daily living. Consequently,
caregivers may experience unacceptably high levels of burden, leading
to isolation and exhaustion.6 7 8
Subjects and Methods
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Study Group
The study group consisted of partners of noninstitutionalized
stroke patients. These patients originated from a cohort of 760
consecutively admitted stroke patients who participated in a
multicenter quality of care study in 23 hospitals in the Netherlands.
Stroke was defined as the sudden onset of focal neurological
dysfunction or loss of consciousness lasting more than 24 hours or
leading to death presumably due to cerebral vascular disease. Three
years after stroke, all survivors were reexamined. The interviews took
place from March 1994 through March 1995.
Clinical data on the acute stroke were abstracted from the
medical and nursing charts. Three years after stroke, patients were
interviewed at home by trained research assistants using a structured
questionnaire. If patients were not communicative because of cognitive,
speech, or language disorders, patient data were collected in a proxy
interview with their partners. Thirteen of the 115 patients (11%) were
not communicative. Data on partners themselves were collected by means
of a self-report questionnaire. While the research assistant
interviewed the patient, partners filled in this self-report
questionnaire.
Data were collected on burden of caregiving and potentially
explanatory factors of this burden. Explanatory factors were studied in
terms of (1) characteristics of patients: sociodemographic
characteristics (age, sex, and level of education), clinical
characteristics (severity, type, and localization of stroke),
functional health (disability in ADL, disability in IADL, and
handicap), and perceived unmet care demands; and (2) characteristics of
partners: age, sex, disability in IADL, quality of life, loneliness,
amount of informal care provided, and perceived unmet care
demands.
Stroke severity, defined as level of consciousness at stroke
onset, was assessed with the Glasgow Coma
Scale.18 Because of the possible presence
of aphasia, the verbal component of this scale was omitted. When a
patient had a maximum score on the eye and motor components, he/she was
considered to be alert. Type of stroke ([sub]cortical infarction,
lacunar infarction, or hemorrhage) and localization of stroke
(left or right hemisphere) were assessed on clinical grounds and
CT data. Scans were made routinely within 2 weeks after stroke
and were evaluated by local radiologists. Disability in ADL was
measured with the Barthel Index,19 and disability
in IADL with the Frenchay Activities Index.20
Handicap was assessed with the modified Rankin
Scale.21 22 Unmet care demands as perceived by
patients ("Do you wish to receive [more] care?") were assessed
for various types of professional care services that are viewed as a
potential supplementation or substitution of informal care given by
partners. For brevity we aggregated the unmet demands into 3 categories
with regard to (1) (I)ADL care (day care, nursing care, and home help);
(2) psychosocial support (social care, mental care, sociocultural care
[eg, organized social activities with other elderly, group travels]);
and (3) aids (including home adaptations).
In partners, IADL disability was also measured with the Frenchay
Activities Index.20 Quality of life was assessed
with the COOP Charts, including the following domains: physical
function, emotional status, role function, social function, and overall
health. Each domain has 5 function levels that are illustrated with
pictogrammes.23 24 Loneliness was measured with
the Loneliness Questionnaire developed by de Jong-Gierveld and
Kamphuis,25 which consists of 11 items addressing
feelings of belonging and aspects of missing relationships. The amount
of care provided by partners was assessed with a self-constructed
scale. For 10 daily activities (personal care, eating or drinking,
mobility inside or outside the house, preparing meals, household
management, recreation, coping with emotional problems, arranging home
adaption, aids or care, and management of finances, insurance, or
housing) partners were asked to indicate the amount of care they
provided on a 3-point rating scale: never or seldom, sometimes, often
or always. The amount of informal care provided was determined by
summation of the item scores, and ranged from 10 (no informal care) to
30 (a large amount of informal care). The reliability of this scale
showed to be sufficient (Cronbach's 
coefficient=0.72). Unmet care
demands as perceived by partners ("Would you benefit from
professional care services [or aids] taking over some care tasks you
have to perform?") were, as with patients' unmet care demands,
assessed for each of the aforementioned types of professional care and
in the analyses aggregated into 3 categories: unmet demands for
(I)ADL care, psychosocial support, and aids.
The level and the specific nature of the burden of caregiving as
experienced by partners of stroke patients were assessed with the Sense
of Competence Questionnaire (SCQ).26 27 The SCQ
is arranged into 3 subscales: (1) satisfaction with the impaired person
as a recipient of care (7 items); (2) satisfaction with one's own
performance as a caregiver (12 items); and (3) consequences of
involvement in care for the personal life of the caregiver (8 items).
Each item was scored on a 4-point rating scale. The burden score was
determined by summation of the item scores; the total score ranges from
27 (no burden) to 108 (severe burden). The psychometric properties of
the SCQ in terms of homogeneity, stability, construct validity, and
clinical validity were good on total level as well as the subscale
level among caregivers of dementia and stroke
patients.27 28
The level and the specific nature of burden are described by the
total mean and the subscale means of the SCQ. Since the SCQ contains 3
subscales with various numbers of items, standardized means were
calculated for comparison of the subscale scores (standardized mean
equals mean subscale score/number of subscale items. Differences
between the subscale means were tested with dependent-samples
t tests. Explanatory factors of burden were identified at a
univariate level with independent-samples t
tests and ANOVA. The significant characteristics of patients and
partners (P
0.10) as identified from the
univariate analysis were also analyzed with
multiple linear regression (with a stepwise forward selection strategy,
using the F statistic, with P=0.05 as the criterion for
selection). Residual analyses were performed to search for
violations of necessary assumptions in terms of linearity, equality of
variance, normality, and influential points (Cook's distances). The
possible presence of collinear data was explored with Tolerance
Statistics. All analyses were done with SPSS/PC+ Statistics,
version 7.5 (SPSS Inc). The study was approved by the Medical
Ethics Committees of the participating centers. Informed consent was
given by all patients and partners.
Results
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Level and Nature of Burden of Caregiving
Table 1
presents the
level and nature of burden of caregiving as experienced by partners of
stroke patients. The mean total SCQ score of burden was 47.1 (range, 30
to 76). Dependent-samples t tests showed that the burden
scores concerning the consequences of involvement in care for the
personal life of the caregiver (subscale 3 of the SCQ) were
significantly higher (standardized mean=2.1) compared with the scores
on subscale 1 (P<0.01) and subscale 2 (P<0.01).
The mean item score was 1.7 (range, 1.3 to 2.8). A relatively high
level of caregiving burden was documented for 5 items: (1) "The
responsibility for my partner weighs heavily on me over and above the
responsibilities for my family, my job, etc" (mean item score=2.1);
(2) "It is unclear to me how much care my partner needs" (mean item
score=2.1); (3) "I feel that my social life has suffered because of
my involvement with my partner" (mean item score=2.2); (4) "I
worry all the time about my partner" (mean item score=2.6); and (5)
"I feel that my partner seems to expect me to take of him/her as if I
were the only one he/she could depend on" (mean item score=2.8).
View this table:
[in a new window]
Table 1. Descriptive Statistics of Level and Nature of Burden
of Caregiving 3 Years After Stroke
Characteristics of Patients
Characteristics of patients and their relationship to the
partners' burden are presented in Table 2. Median age of the patients was 68
years (range, 29 to 90 years), most patients were male (77%), and 63
patients (55%) had only primary education. There were 92
supratentorial strokes (52 subcortical and cortical
infarctions, 26 intracerebral hemorrhages, and
14 lacunar infarctions) and 17 infratentorial strokes. In 6 (5%)
patients stroke type was unknown or incompletely described. As
concerned lesion location, 54 had left-hemisphere and 43 had
right-hemisphere lesions. In 18 (16%) patients lesion laterality was
undetermined (unknown for 1 patient and infratentorial in 17 patients).
Altogether, 44 (38%) patients were disabled in ADL, whereas almost
half of the patients (48%) were substantially handicapped in terms of
care dependency. Univariate analysis did not show a
relationship between patients' sociodemographic characteristics and
partners' burden of caregiving. Concerning the clinical
characteristics, only lesion location was related to partners' burden:
partners of patients with a right-hemisphere lesion perceived a higher
level of burden (P=0.06). Patients' functional health
problems in terms of disability in ADL (P<0.01), disability
in IADL (P=0.08), and handicap (P=0.02) also
appeared to be associated with a higher burden among partners.
Concerning patients' unmet care demands, only unmet demands for aids
showed to be related to higher levels caregiving burden
(P=0.06).
View this table:
[in a new window]
Table 2. Differences in Patient Characteristics in Relation
to Mean Total Score of Partners' Burden (Based on Sense of Competence
Questionnaire) 3 Years After Stroke
Table 3 shows that the median age of
partners was 65 years (range, 28 to 87 years), most partners
were female (77%). Univariate analysis revealed a
significant association between all partner characteristics and the
level of perceived burden, with the exception of partners' age, sex,
and physical functioning as measured with the COOP charts.
View this table:
[in a new window]
Table 3. Differences in Partner Characteristics in Relation
to Mean Total Score of Partners' Burden (Based on Sense of Competence
Questionnaire) 3 Years After Stroke . The variance of the total burden
explained was 47%. Although patients' characteristics in terms of
disability in IADL independently explained 14% of the total variance
in burden, partners' characteristics in terms of disability in IADL
(3%), emotional distress (16%), loneliness (6%), and a large amount
of informal care provided (2%) were able to explain independently the
greater part of the burden level. Not patients' unmet care demands,
but partners' unmet demands for IADL care (2%) and psychosocial
support (4%) appeared to be associated with higher levels of burden of
caregiving. On subscale level, the variance of subscale 3
"consequences of involvement in care for the personal life of the
caregiver" had the highest degree of explained variance (63%),
especially by the amount of care partners provided (29%).
Dissatisfaction with the patient (subscale 1) was primarily explained
by partners' unmet care demands for psychosocial care (24%), whereas
emotional distress was an important explanatory factor (16%) of
dissatisfaction with one's own performance as a caregiver
(subscale 2).
View this table:
[in a new window]
Table 4. Forward Stepwise Regression Models to Explain Burden
of Caregiving at 3 Years After Stroke (n=115 Patients and Partners)12
,
Partial Explained Variance (Partial
R23
), and Total Explained Variance
(Total R2)
Discussion
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
Partners of stroke patients perceived most caregiving burden in
terms of "the consequences of involvement in care for the personal
life of the caregiver" (subscale 3 of the SCQ), and more specifically
in terms of feelings of heavy responsibility, uncertainty about
patient's care needs, constant worries, restraints in social life, and
feelings that patients rely on only their care. Although patients'
impaired functional health was associated with the burden of
caregiving, partners' characteristics seem to have a greater impact on
this burden. A large amount of care provided, partners' unmet demands
for psychosocial care, and their emotional distress were related
especially to higher levels of burden.
Acknowledgments
This study was funded by the Netherlands Heart Foundation (NHS
44.014), Ontwikkelingsgeneeskunde (OG 1991–037), and the Netherlands
Organization of Scientific Research, Medical Science (NWO/KWAZO
900–571-032). Dr Limburg is a Clinical Investigator of the Netherlands
Heart Foundation.
Footnotes
Address correspondence to W.J.M. Scholte op Reimer, Department of Social Medicine, Academic Medical Center, University of Amsterdam, Meibergdreef 15, 1105 AZ Amsterdam, PO Box 22700, 1100 DE Amsterdam, Netherlands.
References
Top
Abstract
Introduction
Subjects and Methods
Results
Discussion
References
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H.M. Dewey, A.G. Thrift, C. Mihalopoulos, R. Carter, R.A.L. Macdonell, J.J. McNeil, and G.A. Donnan Informal Care for Stroke Survivors: Results From the North East Melbourne Stroke Incidence Study (NEMESIS) Stroke, April 1, 2002; 33(4): 1028 - 1033. [Abstract] [Full Text] [PDF]
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 J. Rees, C. O'Boyle, and R. MacDonagh Quality of life: impact of chronic illness on the partner J R Soc Med, January 11, 2001; 94(11): 563 - 566. [Full Text] [PDF]
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C. Anderson, S. Rubenach, C. N. Mhurchu, M. Clark, C. Spencer, and A. Winsor Home or Hospital for Stroke Rehabilitation? Results of a Randomized Controlled Trial : I: Health Outcomes at 6 Months Stroke, May 1, 2000; 31(5): 1024 - 1031. [Abstract] [Full Text] [PDF]
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