Occupational Therapy In Health Care

ISSN: 0738-0577 (Print) 1541-3098 (Online) Journal homepage: http://www.tandfonline.com/loi/iohc20

Burden and Quality of Life of Family Caregivers of

Stroke Patients

Camila Caminha Caro, Jacqueline Denubila Costa & Daniel Marinho Cezar Da
Cruz

To cite this article: Camila Caminha Caro, Jacqueline Denubila Costa & Daniel Marinho Cezar
Da Cruz (2018): Burden and Quality of Life of Family Caregivers of Stroke Patients, Occupational
Therapy In Health Care, DOI: 10.1080/07380577.2018.1449046

To link to this article: https://doi.org/10.1080/07380577.2018.1449046

Published online: 26 Mar 2018.

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OCCUPATIONAL THERAPY IN HEALTH CARE
, VOL. , NO. , –
https://doi.org/./..

Burden and Quality of Life of Family Caregivers of Stroke

Patients
Camila Caminha Caro a , Jacqueline Denubila Costa a
,
and Daniel Marinho Cezar Da Cruz b
a
Programa de Pós-Graduação em Terapia Ocupacional, Universidade Federal de Sao Carlos, Sao Carlos,
Brazil; b Occupational Therapy, Universidade Federal de Sao Carlos, Monjolinho, Sao Carlos, Brazil

ABSTRACT ARTICLE HISTORY

The purpose of this study was to identify the level of burden Received  September 
and quality of life of family caregivers of stroke patients and to Revised  January 
investigate the correlation between burden, quality of life (includ- Accepted  January 
ing physical, social, psychological, and environmental domains), KEYWORDS
age of caregivers, and the care period. A descriptive correlational Caregiver; burden;
cross-sectional study was performed, with a convenience sam- occupational therapy; quality
ple of family caregivers (n = 30) of stroke patients in São Paulo, of life; stroke
Brazil. Data were collected using a questionnaire on participants’
characteristics, the Zarit Burden Interview Scale (ZBIS), and the
World Health Organization Quality of Life-BREF (WHOQOL-BREF)
instrument. A descriptive analysis was performed, and correla-
tions between variables were analyzed using Pearson’s product-
moment correlation coefficient. The average burden score on the
ZBIS was 29.6, representing a moderate burden, and the average
overall quality of life score on the WHOQOL-BREF was 62.06%,
which indicates moderate quality of life. A significant weak nega-
tive correlation was observed between burden and environmen-
tal domains (r = −0.470; p = .009), quality of life (r = −0.414;
p = .023), and physical domains (r = −0.394; p = .031). No sig-
nificant correlations were found between burden and quality of
life, and variables in the psychological and social domains, age
of caregivers, or care period. Caregivers for stroke patients pre-
sented with moderate levels of burden and reduction in quality
of life. Levels of burden correlated negatively with environmen-
tal domains, quality of life levels, and physical domains; however,
these correlations were weak, indicating the possible interference
of other factors.

Introduction
Ischemic and hemorrhagic strokes are caused by an interruption of cerebral blood
flow and are characterized by histopathological changes in areas of the brain and
consequent neuronal death. Physical, cognitive, or behavioral changes may occur,
depending on the area of the brain affected (Brust, 2012). Every year, approximately

CONTACT Camila Caminha Caro camilacaminhacaro@gmail.com Programa de Pós-Graduação em Terapia

Ocupacional, Universidade Federal de Sao Carlos, Rodovia Washington Luis, Km , Sao Carlos –, SP, Brazil.
©  Taylor & Francis Group, LLC
2 C. C. CARO ET AL.

15 million individuals suffer from strokes worldwide and, of these, approximately

a third die, a third have no sequelae, and the remainder have permanent sequelae
(Grysiewicz et al., 2008). Strokes are considered the main cause of long-term disabil-
ity worldwide (Grysiewicz et al., 2008) and the main cause of death and disability in
Brazil, with an annual incidence of 108 cases per 100,000 individuals (Ministério da
Saúde, 2013).
The prevalence of stroke is sex-dependent, with a higher incidence of both
ischemic and hemorrhagic strokes in men than in women (Goldstein et al., 2011).
Disability tends to be higher in women, with a lower probability of independence
and return to activities of daily living (ADLs) after stroke (Roger et al., 2012).
Dependency and care demand are higher during the first 6 months after a stroke
(Carod-Artal et al., 2002). Stroke impairment may be permanent, with patients
presenting with prolonged dependency for ADLs, reduced social interactions, and
emotional and financial issues (Jeong et al., 2015; Kelly-Hayes et al., 2003). Family
involvement is important in helping with ADLs, offering emotional support, and
rehabilitation (Sumathipala et al., 2012), with spouses, especially women, the main
caregivers (Baumann et al., 2011, 2012).
The demands of caregiving lead to a reduction in leisure time, socialization, sleep,
and mental relaxation for family caregivers (Watanabe et al., 2015), and may affect
their well-being and health (Gbiri et al., 2015). Caregiving also influences their
working lives, with a decrease in working hours, resignation, or retirement com-
mon in order to care for a family member (Ko et al., 2007). An increase in expenses
and a decrease of the income of caregivers have also been reported in the 12–15
months after hospital discharge (Banks & Pearson, 2004), and care-related expenses
can be higher than income (Gbiri et al., 2015).
Stress can affect caregivers. The interrelationship between patients and their
caregivers and the context in which care is delivered can be strained when the
events exceed the capabilities of carers, putting their personal well-being in dan-
ger (Lazarus & Folkman, 1986). Burden results from changes caused by strokes that
demand physical and emotional support of family members, and changes to the
social life of caregivers, social isolation, and a decrease in free time (Rigby et al.,
2009; Bocchi, 2004; Sprangers et al., 2000). Factors such as prolonged periods of
care and higher levels of intimacy with the stroke patient, as well as physical, cogni-
tive, and behavioral changes of the patient, reduced mobility, dependency for ADLs,
advanced age, and change in marital relations are all associated with an increase in
the level of burden of the caregiver (Gbiri et al., 2015; Baumann et al., 2012; Rezende
et al., 2010; Rigby, 2009; Rudman et al., 2006; Bocchi, 2004; Bagg et al., 2002; Pearlin
et al., 1991). Individual characteristics of caregivers, such as often being women, hav-
ing a low level of education, and being elderly are considered predictors of burden
(Vincent et al., 2009). Burden has also been associated with emotional and phys-
ical changes in caregivers (Balhara et al., 2012; Rezende et al., 2010; Morimoto &
Schreiner, 2003), including poor health, morbidity, and mortality (Gouin, 2011).
Moreover, a higher level of burden is related to the main indices of dissatisfaction
with life (Bergström et al., 2011).
 OCCUPATIONAL THERAPY IN HEALTH CARE 3

Another aspect of the life of caregivers that can be compromised is their quality
of life. Family caregivers of stroke patients have been reported to have lower quality
of life than the population norm, and the higher the level of behavioral problems
and the lower the level of social reintegration of the stroke survivor, the lower the
quality of life of the caregiver (White et al., 2006). Changes to the quality of life of
caregivers of stroke patients may also be related to deterioration in marital relation-
ships, motor limitations, changes to memory, long periods of care, and the patients’
dependency for ADLs (Baumann et al., 2012; Jeong et al., 2015). Additional factors
associated with a poor quality of life include an increase in time spent at home, a
decreased participation in leisure activities, and social isolation (Baumann et al.,
2011; Sprangers et al., 2000). Personal characteristics typical of caregivers, such as
advanced age, being women, a low level of education, a lack of social relationships,
and low income, are also related to a low quality of life (Jeong et al., 2015; Sprangers
et al., 2000). Poor health of the caregiver is also considered a contributing factor
(White et al., 2006).
In occupational therapy, human occupation plays an essential role in life, and
has a significant influence on health, personal organization, and use of personal
skills and experiences, all of which affect quality of life (Kielhofner, 1980). Evidence
from previous research has identified the impact of caring for family members on
elderly relatives in terms of health and engagement in personal and social activities
(Bookwala et al., 2004). Some occupational therapy studies examining caregivers
of stroke patients have focused on the burden of caregiving activities, rather than
investigating quality of life in relation to the caregivers’ engagement in the caregiv-
ing activity and the relationships between variables of caregiving (Bergström et al.,
2015, 2011; Tooth et al., 2005). Thus, there is a need for research to explore the rela-
tionships associated with occupational engagement of relatives in providing care for
stroke patients and their perceived level of burden and quality of life. The aims of this
study were to identify the levels of burden and quality of life of family caregivers of
stroke patients, and to investigate the correlation between burden, quality of life, and
other variables, such as physical, social, psychological, and environmental domains,
and the care period. We hypothesized that caregiving for stroke patients would result
in high levels of burden for caregivers and affect their quality of life, that burden and
quality of life were intercorrelated, and that there were correlations between burden
and quality of life, and other variables, such as physical, social, psychological and
environmental factors, age of caregivers, and the amount of time devoted to care-
giving.

Methods
A descriptive correlational cross-sectional study was performed in two public health
facilities, one offering ambulatory assistance, and the other home assistance to
patients with physical disabilities in a medium sized city in the interior of the state
of São Paulo, Brazil.
4 C. C. CARO ET AL.

Participants
Multidisciplinary teams at the study facilities identified caregivers of all stroke
patients who were undergoing rehabilitation or had been discharged from the ser-
vices during the previous year. Thirty-eight and 80 caregivers of stroke patients
were identified for the ambulatory assistance service and home assistance service,
respectively. Four participants were common to the two services, and were therefore
excluded from the study. Finally, 114 participants were selected from both services.
The criteria for selection and inclusion were: caregivers aged >18 years; caregiv-
ing experience of 6–72 months for an adult male relative who had suffered only one
stroke episode of at least six months; and currently providing care to a stroke patient
(who had no other neurological or incapacitating conditions). Next, all medical
records of stroke patients were consulted, and participants were screened. Eighty-
four caregivers of stroke patients were excluded because they did not meet the inclu-
sion criteria, and 30 were selected for inclusion in this study.
The study was approved by the Human Research Ethics Committee of the Fed-
eral University of São Carlos, where the study was performed (approval number
407.176). All participants freely signed an informed consent form prior to the start
of the study.

Measures
Sociodemographic and health profile
We developed a structured questionnaire, based on the literature review. The ques-
tionnaire characterized the participants in terms of sociodemographic profile (age,
education, care period, age of stroke patient, monthly income per person living in
the same household as the caregiver, gender, marital status, relationship to the stroke
patient, cohabitation with the stroke patient), and social and health characteris-
tics (paid employment before and after the commencement of caregiving, leisure
activities, support from other family members, changes to sleep patterns, compro-
mised physical and emotional health according to previous medical diagnoses, most
frequently reported health problems, time of commencing care giving, cognitive
impairment of the stroke patient identified via the rehabilitation service’s screening
process, and walking ability in stroke patient.

Burden of care
Burden was evaluated using the Zarit Burden Interview Scale (ZBIS), proposed by
Zarit et al. (1985), which assesses the impact of care on the social, emotional, physi-
cal, and financial well-being of individuals. The Brazilian version of ZBIS was shown
to provide valid and consistent results when applied to caregivers of individuals with
mental illness (Scazufca, 2002). Moreover, it was reliable when applied to caregivers
of individuals with dementia (Taub et al., 2004). This instrument has also been used
to assess caregivers of stroke patients (Pereira et al., 2013; Jeong et al., 2015). It con-
sists of 22 items, with each item being a statement that the caregiver is asked to
 OCCUPATIONAL THERAPY IN HEALTH CARE 5

score on a 0–4 point scale: never = 0, rarely = 1, sometimes = 2, frequently = 3,

and always = 4. The exception is the last item on the scale, which questions whether
the caregiver feels burdened by the caregiver role, and has the following possible
answers: 0 = not at all, 1 = a little, 2 = moderately, 3 = very much, and 4 = extremely.
Burden level is determined by adding all of the scores, and can vary from 0 to 88; the
higher the score, the higher the burden (Schreiner et al., 2006). Burden scores were
classified as follows: 0 to 21 – no burden; 21 to 40 – moderate burden; 41 to 60 –
moderate to severe burden; 61 to 88 – severe burden (Zarit & Zarit, 1987). The scale
also incorporates a predictive cut-off score for the risk of depression of between 24
and 26 points (Schreiner et al., 2006).

Quality of life
Quality of life was evaluated using the World Health Organization Quality of Life-
BREF (WHOQOL-BREF), a tool developed by The Whoqol Group (1996). The
Brazilian version was used, since it demonstrated satisfactory internal consistency,
discriminant validity, concurrent validity, and test-retest reliability in a study on
clinic and hospital patients (Fleck et al., 2000). It consists of 26 items distributed into
four domains: physical (7 items), psychological (6 items), social (3 items), and envi-
ronmental (8 items). The physical domain includes ADLs, dependence on medici-
nal substances and medical aids, energy and fatigue, mobility, pain and discomfort,
sleep and rest, and work capacity. The psychological domain includes bodily image
and appearance, negative feelings, positive feelings, self-esteem, spirituality, religion,
personal beliefs, thinking, learning, memory and concentration. The social domain
includes personal relationships, social support, and sexual activity. The environ-
mental domain includes financial resources, freedom, security, accessibility, qual-
ity of health services and social assistance, domestic environment, opportunities to
acquire knowledge and skills, participation and opportunity for recreational/leisure
activities, physical environment (pollution, noise, traffic, climate), and transporta-
tion (WHO, 1996). Two additional items evaluate overall quality of life and health.
The participants score each question on a 5-point Likert scale with the results given
as a percentage. Higher scores indicate better quality of life.

Procedure

Data were collected at the ambulatory care service or in caregivers’ homes, depend-
ing on the availability of the participants. The demographic questionnaire was
administered during a structured interview conducted by the researchers with the
caregivers followed by the instruments ZBIS and WHOQOL-BREF.
All data were collected in single sessions lasting an average of 1 hour between
January and May 2014.

Data analysis

®
All data were entered onto Microsoft Excel 2010 worksheets (Microsoft Corpo-
ration Inc., Redmond, WA, USA), and simple descriptive analysis was conducted.
6 C. C. CARO ET AL.

Quality of life scoring was calculated using the Statistical Package of Social Sci-
ences (SPSS) (IBM Corporation Inc., Armonk, NY, USA), with WB syntax. Pear-
son’s product-moment correlation coefficient was used to determine correlations
between burden, quality of life, physical, psychological, social, scores were analyzed
and environmental domain, age of caregivers, and care period, using R Core Team
2016 software (The R Foundation for Statistical Computing, Vienna, Austria). Cor-
relation strength was interpreted according to the following reference values: 0.7 ࣘ
r ࣘ 0.89 (high); 0.5 ࣘ r ࣘ 0.69 (moderate); 0.3 ࣘ r ࣘ 0.49 (low); 0.0 ࣘ r ࣘ 0.3 (very
low or no correlation) (Munro, 2005). All analyses were performed with p ࣘ .05.

Results
Demographic characteristics of the stroke patients and their caregivers are shown
in Table 1 and their health and social characteristics in Table 2.
Table 3 shows the burden scores. The observed burden determined using the
ZBIS ranged from 5 to 80, with a mean burden of 29.6 (±17.26) points, representing
moderate burden. Approximately 67% of the sample (20 participants) had burden
scores suggesting they were at risk of depression (Schreiner et al., 2006).
Table 4 shows quality of life scores. The observed WHOQOL-BREF and its
domains ranged from minimum to maximum scores, with an average overall quality
of life score of 62.06% (±17.26%), indicating moderate quality of life.
There were significant correlations between some pairs of variables. There were
weak negative correlations between level of burden and quality of life (r = −0.414;

Table . Sample distribution according to sociodemographic characteristics.

Characteristics of CAREGIVERS Values

Quantitative variable Mean (std dev)

∗
Age (years ) . (.)
Education (years) . (.)
Care period (months) . (.)
Age of stroke patient (years) . (.)
∗∗
Monthly income per person living in the same house as the caregiver(minimum income ) . (.)
Categorical variable N (%)
Gender
Female  ()
Male  ()
Marital status
Married/Stable union  ()
Divorced  ()
Widowed  ()
Single  ()
Kinship to the stroke patient
Wife  ()
Son/daughter  ()
Mother  ()
Other  ()
Cohabitation with the stroke patient
Yes  ()
No  ()

Total number of subjects = .

∗ In Brazil,  years of school corresponds to basic education (similar to middle school),  years correspond to high school
(similar to high school) and above  years of school correspond to higher education (similar to college).
∗∗  = R$ , or USD $ ,.
 OCCUPATIONAL THERAPY IN HEALTH CARE 7

Table . Sample distribution according to health and social characteristics.

Characteristics Values

Categorical variable N (%)

Paid job
Before the commencement of caregiving  ()
After the commencement of caregiving  ()
Leisure activities
Yes  ()
No  ()
Support from other family members
Yes  ()
No  ()
Changes in sleep pattern
Yes  ()
No  ()
∗
Compromised physical health
Yes  ()
No  ()
∗
Compromised emotional health
Yes  ()
No  ()
Most mentioned health problems
Body pain (predominantly in the dorsal region)  ()
Cardiovascular diseases (mainly hypertension)  ()
Arthropathies  ()
Emotional changes (mainly depression)  ()
Dyslipidemias (diabetes mellitus)  ()
Beginning of the health problem
After the stroke of their relative  ()
Different time as the starting point  ()
∗∗
Presence of cognitive impairment in the relative with stroke
Yes  ()
No  ()
Walking in the relative with stroke
Independence  ()
Caregiver’s dependency  ()
Total incapacity to walk (wheelchair)  ()
Total number of subjects = 
∗ Compromised physical and emotional health according to previous medical diagnosis.
∗∗ Screening with Mini Mental State Examination (MMSE) that took place at the rehabilitation service.

p = .023), physical domains (r = −0.394; p = .031), and environmental domains

(r = −0.470; p = .009) (see Table 5). However, the correlations between level of
burden and quality of life, and the age of caregivers, care period, and psychological
and social domains were not significant.

Discussion

Sociodemographic and health aspects

The study sample exclusively comprised caregivers of male stroke patients, whose
mean age was 70 years. The caregivers were mainly women and married to the
patients. Although we expected women to be predominant because the stroke
patients were men, similar profiles have previously been reported in studies of care-
givers of both male and female stroke patients (Jeong et al., 2015; Bergström et al.,
8 C. C. CARO ET AL.

Table . Properties of the sample distribution of burden.

Burden Values

Minimum 
Maximum 
Mean (Std Dev) . (.)
Classification N (%)
Absence or mild  ()
Moderate  ()
Moderate to severe  ()
Severe  ()
Risk for depression
Present  ()
Absent  ()

Total number of subjects = .

Table . Properties of the sample distribution of quality of life.

Values
Quality of life Minimum Maximum Mean (std dev)

Domains
Physical .  . (.)
Psychological . . . (.)
Social   . (.)
Environment . . . (.)
Total . . . (.)

Total number of subjects = .

2015, 2011; Baumann et al., 2012, 2011; Tooth et al., 2005). The profiles of the care-
givers reveal a cultural tendency and preferred participation of women in familial
caregiving. The low income of the participants in our sample may be explained by
the fact that the patients were receiving medical care from public health services.
About 37.9% of the participants left employment after their relatives’ strokes,
confirming the assumptions from Ko et al.’s study (2007) that starting to care for
a relative affected the caregivers’ paid employment; that study found that 36% of
caregivers reduced their working hours, resigned, or retired to provide care for the
relative between the third and ninth month post stroke. There may be several rea-
sons for our finding. First, 87% of our participants cohabited with the stroke patient
and 50% did not benefit from the support of other family members, which made
it difficult to remain in paid employment. The necessity to leave paid employment

Table . Correlations of interest.

Burden Quality of life
Variables R p value R p value
∗
Quality of life − . . — —
∗
Physical domain − . . — —
Psychological domain − . . — —
Social domain − . . — —
∗
Environment domain − . . — —
Period of care − . . . .
Age of caregiver − . . −. .
∗ Significant at % level.
 OCCUPATIONAL THERAPY IN HEALTH CARE 9

might also be a reflection of the absence of public provision for family caregivers
in Brazil. Second, the tendency of women to carry out a number of roles, frequently
including domestic work, paid employment, and caregiving, as suggested by Jacques
(2008), may have made it difficult to achieve a balance between professional activ-
ities, caring for the stroke patient, and other daily responsibilities, thus leading to
adaptations of each of these activities or even abandonment of some of them (Bau-
mann et al., 2011). Third, health problems, particularly those which started after the
relative’s stroke, might be another justification for some caregivers to leave work as
deteriorating health might affect the caregiver’s ability to maintain competing obli-
gations, work being one of them. Therefore, caring for a stroke patient may be con-
sidered directly related to the loss of occupational roles, such paid employment.
Although reduced levels of paid employment may account for the low income
of caregivers in our study to some extent, other possible reasons for a reduction in
income include casual paid work, which would increase time available for caregiving
but result in a less stable income, or the stroke patient, usually the caregiver’s spouse
or member of the caregiver’s household, giving up paid employment. Stroke patients
may face difficulties returning to employment, due to their motor, cognitive, and
emotional limitations (Corr & Wilmer, 2003). Other researchers have reported that
the income of caregivers of stroke patients decreases after their relatives’ discharge
from hospital (Banks & Pearson, 2004). The additional expense of healthcare after
a stroke imposes a financial burden (Gbiri et al., 2015). The combined impact of
reduction in family income and increased expenses may also limit the availability
of resources, further increasing the burden and compromising the quality of life of
caregivers.
The possible reduction in sleep and leisure time we found after starting to care
for a stroke patient corroborates the findings of a similar study in which caregivers
of stroke patients reported difficulty leaving the house (68.8%) and resting (60.0%),
and also reported being sleep deprived (81.2%) (Watanabe et al., 2015). Our finding
may be explained by the responsibilities of caregiving, difficulty in striking a balance
between activities, and absence of support from other family members. Reduction
in sleep and leisure activities may have health consequences (Fernandes & Garcia,
2009) and result in social isolation (Pellerin et al., 2011), as well as reducing active
involvement in other activities, with further detrimental health consequences and
increased burden on the caregivers.
The physical and emotional issues reported by our participants corroborate the
results of a previous study, which reported a higher prevalence of chronic conditions
and psychosomatic problems, predominantly body aches (93.3%) and psychiatric
problems (86.7%), among caregivers (Fernandes & Garcia, 2009). The most frequent
health problem reported is back pain, which may be associated with depression and
sleep disorders (Chapman & Gavrin, 1999). A possible cause of this problem was the
physical demands of caregiving, such as assisting the patient in ADLs (e.g., transfers,
walking, bathing, and dressing), since 60% of the stroke patients of our study had
reduced mobility. Yalcinkaya et al. (2010) reported that 82.2% of caregivers of stroke
patients had low lumbar pain, which was inversely correlated with the physical
10 C. C. CARO ET AL.

dependency of the stroke patient. Illness among caregivers can be the result of care-
giving activities; we found that 30% of the caregivers of our study became ill after
their relative’s stroke, which corroborates the findings of a study that reported the
health impacts on caregivers (Bookwala et al. 2004). These repercussions demon-
strate that occupational engagement in caregiving activities has a possible affect on
health and well-being indices of caregivers, with implications for their quality of life.

Burden and quality of life

We found a range of scores for burden in our study participants, with the overall
average score representing a moderate burden. Our findings are similar to those in
previous studies using the Caregiver Burden Scale to evaluate burden among care-
givers of stroke patients (Bergström et al., 2015; Pereira et al., 2013). The moder-
ate levels of burden among caregivers in our study can be explained by character-
istics of the stroke patients, such as cognitive changes, reduced mobility, old age,
the requirement for long-term and intimate care, and the patient and carer being
married. Although not assessed in this study, physical and behavioral changes, and
dependency for ADLs may also be factors. These data are supported by several stud-
ies that report relationships between these variables (Gbiri et al., 2015; Baumann
et al., 2012; Rezende et al., 2010; Rigby, 2009; Rudman et al., 2006; Bocchi, 2004;
Bagg et al., 2002; Pearlin et al., 1991) and support the fact that 30% of the caregivers
fell ill after their relative’s stroke, highlighting the impact of the burden of caring for
relatives with stroke on their caregivers.
Burden may also have related to characteristics of the caregivers (e.g., women and
low education levels); other characteristics have been identified in previous studies
(Rezende et al., 2010; Vincent et al., 2009). Significant positive correlations between
caregiver burden, emotional changes, and psycho-emotional disorders have also
been identified previously (Balhara et al., 2012; Rezende et al., 2010). However,
such impairments may not necessarily be related to care in our study, since 70%
of our participants stated they had health issues prior to the illness of their relative.
Although involvement of relatives of stroke patients in caregiving is a determinant of
caregiver burden, it is not an exclusive factor, since other aspects may also influence
this variable.
We found that moderate levels of burden were associated with increased scores
for risk of depression (67%) and changes in emotional health (33%). These find-
ings correspond with those of previous studies reporting a relationship between
increased levels of burden and increased rates of depression among caregivers of
stroke patients (Balhara et al., 2012; Rezende et al., 2010). There may be several rea-
sons for our findings including those we have already identified, such as changes to
employment, low participation rates in leisure activities, and changes in sleep pat-
terns. Other possible factors include secondary triggers for stress related to care,
such as social isolation, problems with relationships with the relative for whom they
are caring, and a feeling of self-annulment (Pearlin et al., 1991). Thus, there is a need
 OCCUPATIONAL THERAPY IN HEALTH CARE 11

for preventive health measures targeted at family caregivers of stroke patients, given
the risk of development of depression.
The moderate average quality of life score indicated possible detrimental changes
to overall quality of life and to physical, psychological, social, and environmental
domains. Higher average quality of life scores for physical (75.4%), psychological
(70%), social (77.4%), and environmental domains (73%) were observed in a pre-
vious study of caregivers of stroke patients using the WHOQOL-BREF (Baumann
et al., 2012). The differences between the results of our study and that of Baumann
et al. can be explained by the higher education level of Baumann et al.’s study popu-
lation (57.6% – 12 or more years) than in our study (average 4.9 years), as education
level is a predictor of quality of life (Sprangers et al., 2000).
Other personal characteristics of caregivers that may explain our findings are the
predominance of women as caregivers and low income levels (Jeong et al., 2015;
Sprangers et al., 2000). Our findings of physical and emotional impairment among
the caregivers, and the fact that 30% of them reported having suffered ill health fol-
lowing their relative’s stroke, are also possible justifications for a reduction in qual-
ity of life. White et al., (2006) also noted that caregivers’ health problems reduced
their quality of life. Moreover, as in our study, López-Espuela et al. (2015) reported
changes to quality of life, particularly in the pain/discomfort (66.7%) and anxi-
ety/depression (68.8%) domains, in their study, which used the EuroQol-5D (EQ-
5D) questionnaire.
The quality of life of caregivers in our study may also have been affected by
changes in their marital relationships, given that most caregivers and patients were
married (Baumann et al., 2011). Other likely factors affecting the caregivers’ quality
of life include motor limitations and cognitive changes of the stroke patients and the
requirement for long-term care, allowing caregivers little opportunity to participate
in leisure activities (Baumann et al., 2012; Jeong et al., 2015). Additional factors not
assessed in our study that may also account for our findings include increased time
spent at home and social isolation (Baumann et al., 2011; Sprangers et al., 2000).
Thus, the quality of life of stroke patients is affected by diverse factors, and occupa-
tional engagement in caregiving activities and their repercussions demand specific
attention in this population.

Correlation between burden and quality of life, and environmental and physical
domains
Significant weak negative correlations were found between level of burden and qual-
ity of life of caregivers, confirming the key hypothesis of this study. McCullagh et al.
(2005) also found a significant negative correlation between the determinant fac-
tors of burden among caregivers of stroke patients using the Hospital Anxiety and
Depression Scale, EQ-5D, and EuroQol Visual Analogue Scale over 12 months of
care. The consequences of burden to the caregiver’s quality of life caused by care-
giving highlight the need for interventions aimed at reducing or preventing bur-
den. Such interventions may include preventative programs addressing the health
12 C. C. CARO ET AL.

needs of caregivers, as an experience with a group of caregivers of patients with amy-

otrophic lateral sclerosis that was recognized as an opportunity to discuss emotional
issues and caregiving difficulties (Almeida et al., 2017). These interventions are of
the utmost importance because an increase in the caregiver’s burden may also affect
the level of care provided by the caregiver, and because we found that environmental
and physical variables were the variables most impaired by the burden of caregiving.
The significant weak negative correlations found in our study between the level
of burden and the environmental domains confirm our key hypothesis and demon-
strate the multiple dimensions of burden. Factors identified in our study that support
these correlations include low income and low levels of participation in leisure activ-
ities. Gbiri et al. (2015) also identified that burden had a significant negative influ-
ence on the financial well-being of caregivers. We did not assess factors such as free-
dom, security, accessibility, quality of health services and social assistance, domestic
environment, opportunities to acquire knowledge and skills, physical environment,
and transportation (WHO, 1996), although these may also be contributory factors.
The findings of our and other studies indicate that the level of burden may be affected
by factors not related to caregiving, since burden results from the interrelationship
between individuals and their environment (Lazarus & Folkman, 1986). Environ-
mental factors may therefore be mediators of the relationship between burden and
quality of life of caregivers, indicating the need for future research to identify their
role.
A significant weak negative correlation was also found between level of burden
and the physical domain, supporting our earlier finding that caregiving has effects on
physical health. Kumar, Kaur, and Reddemma (2015) used the ZBIS and WHOQOL-
BREF instrument to assess quality of life and burden of caregivers of stroke patients
and identified via hierarchical multiple correlations that higher levels of burden were
negatively associated with physical aspects of quality of life. These correlations may
have resulted from high levels of pain and changes to physical health reported by
the participants and reinforce the importance of rehabilitation aimed at increasing
the independence of stroke patients. Occupational therapy is an important resource
in order to reduce the physical demands of care on caregivers; for example, occu-
pational therapists can provide help improve accessibility, make adaptations to the
environment, and provide assistive devices for ADLs.
A correlation between level of burden and the psychological domain was not
observed. We expected to find a correlation, given the predictive risk of depression
related to burden we had identified in 67% of caregivers and changes in emotional
health in 33%, and because caregiver burden is considered a predictor of emotional
changes (Balhara et al., 2012; Morimoto & Schreiner, 2003) and dissatisfaction with
life (Bergström et al., 2011). Our assumption was based on Gbiri et al.’s findings that
identified a significant negative influence of burden on the emotional well-being of
caregivers (2015). However, the absence of a significant correlation between level
of burden and the psychological domain may be explained by mediating factors,
such as coping strategies that focus on problem solving and controlling emotions
(Lazarus & Folkman, 1986).
 OCCUPATIONAL THERAPY IN HEALTH CARE 13

We also found that there was no significant correlation between level of burden
and the social domain in our study as expected since participants reported decreased
levels of employment, reduced participation in leisure activities, which indicates
a reduction in social activities, and lack of support from other family members
(50%), which implies a possible reduction in integral care. Social isolation and a
decrease in free time have been found to increase burden (Bocchi, 2004; Sprangers
et al., 2000) and caregiving responsibilities have been found to be a factor leading
to decreased personal and social activity (Bookwala et al., 2004). Moreover, burden
has been found to have a significant negative influence on the social well-being of
caregivers (Gbiri et al., 2015). The absence of a significant correlation between level
of burden and the social domain may be explained by factors not addressed in our
study, such as those involved in confrontation mechanisms: social skills, motivation,
social support (friends or healthcare professionals), and material resources (Lazarus
& Folkman, 1986). Another possible explanation for the absence of a correlation are
caregivers’ preexisting roles, which may also contribute to quality of life variables in
the social domain.
No significant correlations were found between burden and quality of life, and age
of caregivers. Similar findings were also reported in a previous study of caregivers of
stroke patients (McCullagh et al., 2005). However, we expected to find correlations
because the influence of age on burden (Vincent et al., 2009) and on quality of life
(Jeong et al., 2015; Sprangers et al., 2000) has been widely reported in the literature
and because, on average, our participants were in late middle age (average age, 58.70
years). Aging is a lifelong process and implies maturation and change at physical,
psychological, and social levels (Riley, 1978). The absence of correlations may reflect
the presence of factors that reduce the impact of the physical, psychological, and
social changes associated with aging, such as healthcare and social participation.
Finally, we did not find a significant correlation between burden and quality of
life, and the care period. In contrast to our findings, several studies have reported
that a long period of care of elderly stroke patients by family caregivers is predictive
of a higher level of burden and detrimental changes to quality of life (Rigby et al.,
2009; Sprangers et al., 2000; Vincent et al., 2009), most likely because of prolonged
exposure to stress factors. However, the lack of correlation we found may be due to
adaptation to a new routine through quickly established habits, non-rigid beliefs,
and effective problem-solving skills (Lazarus & Folkman, 1986). Further research
is required to elucidate the role of these and other determinants of confrontation
mechanisms as mediators of burden.

Implications for occupational therapy practice

Our results demonstrate that occupational engagement in caregiving activities leads
to increased burden and lower quality of life, which may have health implications for
caregivers. Our research highlights the importance of occupational therapy inter-
ventions for family caregivers and stroke patients, aimed at changing factors that
cause burden in a clinical context. Interventions that aim increasing the functional
14 C. C. CARO ET AL.

independence of the stroke survivors can use environmental modifications and

compensatory strategies for ADLs reducing the burden of care. Also, the focus on
caregivers meaningful occupations as a aim of intervention can preventing health
problems. Occupational therapists can make positive contributions to the health
and quality of life of caregivers through occupational engagement, as well as by
identifying care-related activities with potentially negative effects, thereby helping
to reduce detrimental consequences (American Occupational Therapy Association,
2004; Stav et al., 2012). This will require a change from a clinical approach aimed
only at addressing the needs of stroke patients to an approach that also considers
family caregivers of stroke patients. This might be done through reorganization of
routine, including habits and occupational roles with focus on balance between care
and other occupations such as leisure, rest and sleep and relaxing activities.

Limitations
This study has some limitations, particularly regarding composition of the partici-
pants in the sample, both in relation to collection sites and to the profiles of care-
givers of male stroke patients without associated comorbidities. We recognize that
these limitations prevented us from identifying characteristics of burden and quality
of life in a narrower group of participants. Most caregivers in our study were provid-
ing care to relatives who were elderly. This is critical because aging results in changes
in function and cognition, and may interfere with the care and support provided by
the caregiver, resulting in higher burden and a greater effect on quality of life. Thus,
it is likely that the demographic profile of the stroke patients in our study may justify
the stress levels evidenced by the caregivers.
Although inverse correlations were identified between burden and two of the
variables of quality of life (the environmental and physical domains), these corre-
lations were weak. Though previous studies report significant correlations between
burden, and social and psychological aspects, as well as between burden and quality
of life, and age of caregivers and care period, we did not find significant correlations
between these variables, possibly partly due to the use of measurement tools that
might be less sensitive than those used in other studies, or due to the small sample
size. Further larger studies are therefore needed.
Another possible limitation was that we did not investigate aspects such as coping
and factors involved in confrontation mechanisms, which are considered mediators
of burden and quality of life, and this may also have accounted for the absence of
significant correlations. Future research on the role of these factors as mediators of
burden and quality of life among caregivers of stroke patients are recommended.

Summary
The purposes of our study were to identify the levels of burden and quality of life of
family caregivers of stroke patients, and to investigate the correlation between bur-
den, quality of life, and other variables, such as physical, social, psychological, and
 OCCUPATIONAL THERAPY IN HEALTH CARE 15

environmental domains, and the care period. The study revealed the predominance
of women, particularly spouses, in caring for male stroke patients and presented
with moderate levels of burden that correlated significantly with decreased quality
of life. Significant correlations were also identified between burden and environ-
mental and physical domains, which demonstrate the possible impact on caregiving
activities of external factors not addressed by this study on the caregiver’s quality of
life. However, these correlations were weak, indicating the possible effects of other
factors on these variables.
Further longitudinal studies with larger samples are needed to better understand
the impact of caring for stroke patients on caregivers’ health and quality of life.
Moreover, studies that address the role of environmental factors and the influence
of mediators of burden, such as confrontation and coping mechanisms, are also
needed. We also suggest performing clinical trials that investigate the effects of occu-
pational therapy directed towards caregivers in order to prevent burden and pro-
mote quality of life among caregivers. We hope that new studies will help to estab-
lish guidelines for new public policies and actions aimed at promoting the health of
family caregivers of stroke patients.

Declaration of interest
The authors report no conflicts of interest. The authors alone are responsible for the content and
writing of the paper.

ORCID
Camila Caminha Caro http://orcid.org/0000-0002-1487-2737
Jacqueline Denubila Costa http://orcid.org/0000-0001-9650-1309
Daniel Marinho Cezar Da Cruz http://orcid.org/0000-0002-4708-354X

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