1006737

research-article2021
ISP0010.1177/00207640211006737International Journal of Social PsychiatryCohen et al.

E CAMDEN SCHIZOPH

Original Article

International Journal of

Quality of life of family primary Social Psychiatry

1­–9
© The Author(s) 2021
caregivers of individuals with Article reuse guidelines:
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bipolar disorder and schizophrenia DOI: 10.1177/00207640211006737

https://doi.org/10.1177/00207640211006737
journals.sagepub.com/home/isp

in south of Brazil

Mírian Cohen1,2 , Ana Flávia Barros da Silva Lima2,

Clarissa Pereira de Albuquerque Silva3,
Sandro René Pinto de Sousa Miguel2
and Marcelo Pio de Almeida Fleck4

Abstract
Background: The process of deinstitutionalization of individuals with mental disorders (MD) brought greater family
responsibility in terms of patient care.
Aims: Evaluate the Quality of Life (QoL) and its associated factors of primary caregivers of bipolar and schizophrenic
subjects.
Methods: A cross-sectional survey was conducted from 2012 to 2015 with 125 caregivers at an outpatient service of
a teaching hospital in the South of Brazil. QoL instruments (WHOQOL-Bref, SF-36), questionnaires regarding socio-
demographic, clinical data and depressive symptoms (BDI) were applied.
Results: Caregivers of schizophrenic individuals presented lower QoL scores than caregivers of bipolar individuals,
with moderate effect in physical, and social domains of WHOQOL-Bref, and in physical functioning, role-physical, and
role-emotional domains of SF-36. QoL scores of caregivers were lower when compared with the normative data of
the Brazilian population. The factors associated with lower QoL scores were: patient diagnosis of schizophrenia, female
gender, presence of clinical disease and presence of depressive symptoms in the caregiver.
Conclusions: Caregivers of patients with schizophrenia or bipolar disorder present a significant impairment in their
QoL when compared with the general population, highlighting the relevance of developing support programs in the
mental health services that include these caregivers.

Keywords
Quality of life, caregiver, bipolar disorder, schizophrenia

Introduction family has taken a central role in their treatment

Schizophrenia and bipolar disorder (BD) are chronic psy-
chiatric disorders, often disabling, that are considered
important causes of disease burden, especially in low and
middle-income countries (He et al., 2020a, 2020b). Family
members are also affected, with studies showing a signifi-
cant burden resulting from changes in family routines,
social isolation, feelings of guilt, concerns and reduction in
leisure time (Caqueo-Urizar & Gutierrez-Maldonado,
2006; Perlick et al., 2007).
Following an international movement towards deinsti-
tutionalization of individuals with mental disorders (MD),
the psychiatric treatment in Brazil which was previously
performed in hospitals and asylums started to be imple-
mented in community units (Centros de Atenção
Psicossocial; in english: psychosocial care centres), and
(Castaldelli-Maia & Ventriglio, 2016). However, caregiv-
ers were included in this process without receiving any
adequate guidance to perform this new role, and the
healthcare system was not sufficiently organized to
1
 ostgraduate Program in Epidemiology, Universidade Federal do Rio
P
Grande do Sul (UFRGS), Porto Alegre, Brazil
2
Instituto de Avaliação de Tecnologia em Saúde (IATS), Porto Alegre, Brazil
3
Department of Psychiatry, Hospital Nossa Senhora da Conceição,
Porto Alegre, Brazil
4
Postgraduate Program in Psychiatry, Universidade Federal do Rio
Grande do Sul (UFRGS), Porto Alegre, Brazil
Corresponding author:
Mírian Cohen, Universidade Federal do Rio Grande do Sul, Rua Dona
Laura, 45, Sala 402, Porto Alegre, RS 90430-091, Brazil.
Email: mirian.cohen@22c.com.br
2 International Journal of Social Psychiatry 00(0)
prepare them for a new model of care (Awad & Voruganti,
2008; Caqueo-Urizar & Gutierrez-Maldonado, 2006;
Caqueo-Urizar et al., 2009).
Several studies have been conducted to evaluate the
impact of burden on these families (Awad & Voruganti,
2008; Caqueo-Urizar & Gutierrez-Maldonado, 2006;
Perlick et al., 2007). However, the burden concept has a
limited and negative perspective on what it means to be a
caregiver, and it has been shown that many caregivers con-
sider this situation a rewarding and positive experience in
their lives (Kate et al., 2012; Kulhara et al., 2012). In this
context, researches evaluating broader and neutral con-
cepts such as Quality of Life (QoL) are needed.
Literature shows that caregivers of individuals with
MD present impairment in QoL due to factors such as
physical, emotional and financial stress (Caqueo-Urizar
et al., 2009; Cicek et al., 2013; Martin et al., 2011;
Zendjidjian et al., 2012). When compared with other car-
egivers, schizophrenic caregivers present the lowest scores
of QoL (Gupta et al., 2015; Zendjidjian et al., 2012). In
Brazil, data regarding QoL of caregivers of subjects with
MD are scarce. Two studies that evaluated the QoL of fam-
ily members of first-episode psychosis (FEP) patients in
Brazil indicated that they have an important impairment in
their QoL (Jorge & Chaves, 2012; Jorge et al., 2019). The
evaluation of affected domains, and factors associated to
QoL changes could provide a better understanding and
support the development of improvement strategies.
The study aims to: (a) assess and compare the QoL of
caregivers of individuals with schizophrenia/schizoaffec-
tive disorders and BD; (b) compare caregivers QoL with
the normative data of Brazilian population; (c) assess the
impact of sociodemographic and clinical variables on car-
egivers QoL.
Methods
Subjects and procedures
A cross-sectional study by convenience sampling was con-
ducted between 2012 and 2015 at an outpatient service of
a teaching hospital in the south of Brazil (Hospital
Psiquiátrico São Pedro). Primary caregiver was the family
member that the patient or the staff considered central in
providing support and assistance, such as attendance in
follow-up visits, financial and emotional support (Boyer
et al., 2012; Perlick et al., 2004). Selection criteria were:
(a) capacity to answer self-reported instruments; (b) mini-
mum age of 18 years; (c) acceptance to participate.
Individuals who agreed to participate in the study signed
an informed consent form approved by the Ethics and
Research Committee of the institution.
Patients with the following criteria were enrolled: (a)
diagnosis of BD (in a mixed or depressive episode), schiz-
ophrenia or schizoaffective disorder, according to
DSM-IV-TR (American Psychiatric Association, 2000);
(b) presence of acute symptoms; (c) who have consented
with the participation of their family members in the study.
Patient diagnosis was confirmed through a clinical inter-
view conducted by the assistant physician.
Measures
Sociodemographic and clinical data questionnaires. Data
regarding caregivers such as gender, age, years of educa-
tion, marital status, occupational status, socioeconomic
class, degree of relationship with the patient and presence
of clinical comorbidities were evaluated. The presence of
a clinical illness was assessed using a self-administered
instrument with a list of 23 clinical illnesses. Socioeco-
nomic classification was ranked using the Economic Clas-
sification Criterion Brazil 2010 instrument, which seeks to
estimate the purchasing power of individuals, being scored
according to the possession of material items and the level
of education of the head of the household. Classes range
from A to E, in decreasing order based on the average
monthly family income (Brazilian Association of Research
Companies, 2010). The authors also created a question to
estimate how much the caregiver felt that the patient’s ill-
ness interfered in their quality of life, using a Likert Scale
with five categories: not at all, a little, moderately, very
much, extremely.
Data regarding the patient such as diagnosis, age, gen-
der, age of onset of symptoms and disease duration were
also assessed.
Quality of life questionnaires. The Medical Outcomes Study
Questionnaire 36-Item Short Form Health Survey (SF-36)
and the World Health Organization Quality of Life Instru-
ment – Bref (WHOQOL-Bref) were applied, both of which
represent generic and self-administered instruments of
QoL and were also translated and culturally validated for
the Brazilian population (Ciconelli et al., 1999; Fleck
et al., 2000; Ware & Sherbourne, 1992). These two instru-
ments were considered appropriate in a review conducted
on instruments for assessing outcomes in caregivers of
individuals with MD (Harvey et al., 2008).
SF-36 questionnaire consists of 36 items, providing
scores for 8 dimensions of QoL: physical functioning (PF),
role-physical problems (RPP), bodily pain (BP), general
health (GH), vitality (VIT), social functioning (SF), role-
emotional problems (REP) and mental health (MH). The
score ranges from 0 (worst result) to 100 (best result)
(Drummond et al., 2006). WHOQOL – BREF is an instru-
ment composed of 26 questions divided in four domains:
physical, psychological, social relationships and environ-
ment, along with two general questions of QoL. Each ques-
tion is scored on a Likert scale from 1 to 5, its total score
ranges from 0 to 20 or from 0 to 100, and the higher the
value of the scores, the better the QoL (Fleck et al., 2000).
Cohen et al.
In our study, all the domains were measured from 0 to 100,
the only domain measured from 0 to 20 was the overall.
Depressive symptoms scale. The Beck Depression Inven-
tory (BDI) assesses the presence and severity of depressive
symptoms. It consists of 21 items, including symptoms
and attitudes, with their intensity ranging from 0 to 3. The
recommended cut-off point indicative of depression is
⩾12, based on standard values in Brazil (Gorenstein &
Andrade, 1996).
Statistical analysis
Quantitative variables with symmetric distribution were
described by mean and standard deviation and compared
using the Student’s t test for independent samples. Non-
parametric tests were used for non-normal distributions.
Categorical variables were described by n (%) and com-
pared by chi-square test. The p value <0.05 was consid-
ered significant. Cohen’s d test was applied to assess the
effect size of QoL differences between caregivers of schiz-
ophrenic and bipolar patients, and to compare caregivers
QoL with Brazilian normative data (Cruz et al., 2011,
2013). Sample size calculation was performed to detect a
60% difference in the standard deviation between the mean
QoL scores. An alpha of .05 and a power of 90% were
considered, estimating 60 caregivers in each group.
Multivariate analysis was performed through multiple
hierarchical regression to estimate the relative importance
of specific variables in QoL scores. Through a literature
review, a theoretical model was developed to include vari-
ables that are known to impact caregivers’ quality of life.
The first model was comprised of caregiver variables –
gender female, age, kinship parents and years of study. The
second model included the patient diagnosis of schizo-
phrenia, the third model included duration of patient’s ill-
ness, the fourth model included the presence of clinical
illness and the fifth model included the presence of depres-
sive symptoms in the caregiver. In the regression model,
we established the significance level of p < .10. Non-
significant variables were removed from and the regres-
sion was re-run without these variables. Data were
analysed using SPSS version 20.
Results
The sample was composed of 125 caregivers, 62 family
members of individuals with schizophrenia/schizoaffec-
tive disorder and 63 family members of individuals with
BD. Most of caregivers were female (76.8%), married or
living with a partner (62.9%), with an average age of
46.1 ± 14.9 years, were employed (45.9%) and belonged
to the economic class C (52.1%). Regarding degree of kin-
ship, 33.9% were parents, followed by 24.2% of spouses
or partners. Prevalence of clinical illness in caregivers was
3
71.2%, and of depressive symptoms was 47.2%. Caregivers
of individuals with schizophrenia (Cs) were older
(CS = 51.28 ± 12.65; CBD = 40.55 ± 15.17; p < .001) and
had a higher prevalence of depressive symptoms compared
to caregivers of individuals with BD (CBD) (CS = 66.7%;
CBD = 27.4%; p < .001) (Table 1).
The patients had an average of 39.3 ± 11.8 years, with
an age of onset of symptoms of 24 ± 10.2 years, with 56%
of them having 15 or more years of disease. Most of the
patients with BD were female, while those with schizo-
phrenia were male (p < .001) (Table 1).
QoL scores of caregivers of patients with schizophre-
nia were lower than caregivers of patients with BD. The
main differences were found in the role-physical domain
of SF-36 (ES = −0.60; CI 95% −0.96 to −0.24; p < .005)
and in the physical domain of WHOQOL-Bref
(ES = −0.57; CI 95%, −0.93 to −0.21; p < .005) (Table
2). Comparing caregiver’s QoL with the normative data
of Brazilian population, caregivers presented lower
scores in almost all domains (p < .001). The highest dif-
ferences were found in social domain of WHOQOL-Bref
(ES = −1.04; CI 95%, −1.24 to −0.85; p < .001) and in
mental health domain of SF-36 (ES = −0.73; CI 95%,
−0.53 to −0.92; p < .001) (Table 3). Most caregivers
(67.7%) considered that the patient’s illness interfered
moderately to extremely in their QoL, and 32.3% con-
sidered that it did not interfered or interfered a little.
Data from hierarchical regression are presented in Table
4. Variability in QoL scores were best explained by the fol-
lowing factors: patients’ diagnosis of schizophrenia,
female gender, presence of clinical illness and presence of
depressive symptoms in the caregiver. The variance
explained by the regression model was around 15% to
53%, according to the quality of life domain.
Discussion
The findings demonstrate that family caregivers of indi-
viduals with schizophrenia or BD present a relevant
impairment in their QoL, as evidenced by the comparison
with the normative data of Brazilian population. These
results are in agreement with previous studies in other
countries that demonstrated that these caregivers have
worse QoL scores when compared to the general popula-
tion (Hsiao et al., 2017; Leng et al., 2019; Noghani et al.,
2016; Zendjidjian et al., 2012). The presence of lower
scores occurred in practically all domains, and the most
affected domains were social relations of WHOQOL; and
social, role-emotional problems, and mental health of
SF-36. It is also consistent with studies that indicate that
caregivers suffer a greater impact in QoL related to mental
health domains in comparison with physical domains
(Smith et al., 2014; Zendjidjian et al., 2012).
Two studies in Brazil evaluating QoL of caregivers
of individuals in first-episode psychosis also found
4 International Journal of Social Psychiatry 00(0)

Table 1. Sociodemographic and clinical characteristics of caregivers and patients.

Bipolar Schizophrenia p Value

(N = 62) (N = 63)
1. Caregiver
Age (years) 40.55 ± 15.17 51.28 ± 12.65 <.001**
Gender female 69.4% 84.1% .081
Relationship with the patient
Partner 29.0% 19.4% .012*
Father/mother 24.2% 43.5%
Siblings/others 25.9% 29.0%
Son/daughter 21.0% 8.1%
Years of education 9.9 ± 3.3 10.4 ± 4.1 .497
Marital status married/living with 61.3% 64.5% .853
partner
Employment status
Employed 50.8% 41.3% .548
Unemployed 16.9% 22.2%
Retired/others 32.2% 36.5%
Socioeconomic level
A+B 44.6% 32.8% .298
C 44.6% 59.0%
D+E 10.7% 8.2%
Clinical illness 62.9% 79.4% .067
Depressive symptoms 27.4% 66.7% <.001**
2. Patient
Gender female 75.8% 33.3% <.001**
Age (years) 40.31 ± 10.92 38.38 ± 12.43 .388
Age of onset (years) 22.78 ± 10.54 24.91 ± 9.97 .296
Duration of illness (years) 16 (8–29) 11 (4.5–17) .044*

*p < .05. **p < .01.

significant impairment in their QoL, particularly in social
functioning, mental health, and role-emotional SF-36
domains, supporting the findings of our study (Jorge &
Chaves, 2012; Jorge et al., 2019). In our sample, caregiv-
ers presented even lower QoL scores, probably due to the
chronic experience of caregiving since we did not restrict
to patients in their first psychosis episodes (Jorge &
Chaves, 2012; Jorge et al., 2019; Leng et al., 2019).
The family members that provided care to schizo-
phrenic patients had lower QoL scores than relatives that
provided care to individuals with BD in all domains, with
moderate effect in the physical domains of WHOQOL and
SF-36, in the social relations domain of WHOQOL, and in
the role-emotional problems of SF-36. A study from Poon
et al. (2017) showed that a high percentage of caregivers of
individuals with psychosis reported poor social connected-
ness. According to the literature, caregivers of patients
with schizophrenia have lower QoL scores compared to
other caregivers (Gupta et al., 2015; Zendjidjian et al.,
2012). Most of the caregivers were female, which is in line
with researches showing that women are the main car-
egiver when an individual in the family becomes ill.
Specifically, in the case of individuals with schizophrenia,
mothers are the main caregivers (Caqueo-Urízar et al.,
2017; Hsiao et al., 2020; Jorge et al., 2019; Zendjidjian
et al., 2012).
Disease duration in years was higher for patients with
BD. This finding may have occurred as a result of the ser-
vice being specialized – primary care physicians generally
consider themselves more capable of treating affective dis-
orders than psychotic disorders, taking longer before refer-
ring these patients to the specialized service. Furthermore,
schizophrenia is a disorder that tends to have a course with
more episodes of crises and hospitalizations, leading
patients to an earlier access to specialized service.
The high prevalence of depressive symptoms in car-
egivers was significant, confirming previous studies that
indicate that these subjects are more susceptible to present
psychiatric symptoms such as depression and anxiety
(Jeyagurunathan et al., 2017; Jorge et al., 2019; Rodrigo
et al., 2013; Steele et al., 2010). According to Gupta et al.
(2015), these symptoms are associated with chronic stress,
which seems to have been caused by the caregiving bur-
den. There is evidence that the presence of positive (psy-
chotic) symptoms in these patients and the stigma factor
are related to a higher burden on caregivers, which is
Cohen et al. 5

Table 2. Comparison of QoL scores between caregivers of schizophrenic and bipolar patients.

Schizophrenic Bipolar
mean ± SD mean ± SD p Value Effect size (CI 95%)
WHOQOL-BREF domains
Overall 12.55 ± 3.30 14.00 ± 3.66 .022* −0.42 (−0.77; −0.06)
Physical 55.83 ± 19.57 67.45 ± 21.18 .002** −0.57 (−0.93; −0.21)
Psychological 56.81 ± 18.21 60.36 ± 22.38 .335 −0.17 (−0.77; −0.06)
Social 50.86 ± 25.50 60.35 ± 23.80 .033* −0.38 (−0.74; −0.03)
Environment 48.62 ± 16.71 54.42 ± 19.63 .078 −0.32 (−0.67; 0.04)
SF-36 domains
Physical functioning 62.08 ± 29.19 75.15 ± 25.53 .009** −0.48 (−0.83; −0.12)
Role-physical 41.14 ± 41.34 65.16 ± 38.26 .001** −0.60 (−0.96; −0.24)
Bodily pain 53.57 ± 24.81 65.27 ± 27.14 .013* −0.45 (−0.80; −0.24)
General health 58.89 ± 20.85 67.23 ± 21.10 .034* −0.40 (−0.76; −0.03)
Vitality 50.16 ± 21.27 57.04 ± 23.96 .100 −0.30 (0.06; −0.67)
Social functioning 61.71 ± 25.39 67.94 ± 29.91 .211 −0.22 (−0.58; 0.13)
Role-emotional 37.83 ± 40.85 58.06 ± 42.22 .007** −0.49 (−0.84; −0.13)
Mental health 57.38 ± 19.30 61.35 ± 24.14 .331 −0.18 (−0.54; 0.18)

*p < .05. **p < .01.

Table 3. Comparison of QoL scores between caregivers and the normative data of Brazilian population.

Caregivers Population

mean ± SD mean ± SD p Value Effect size (CI 95%)

WHOQOL-BREF domains
Physical 61.64 ± 21.13 58.9 ± 10.5 .02* 0.22 (0.03; 0.41)
Psychological 58.56 ± 20.36 65.9 ± 10.8 <.001** −0.58 (−0.77; −0.39)
Social 55.57 ± 25.03 76.2 ± 18.8 <.001** −1.04 (−1.24; −0.85)
Environment 51.47 ± 18.36 59.9 ± 14.9 <.001** −0.55 (−0.74; −0.35)
SF-36 domains
Physical functioning 68.56 ± 28.10 82.45 ± 20.51 <.001** −0.65 (−0.84; −0.46)
Role-physical 52.96 ± 41.49 74.73 ± 35.33 <.001** −0.60 (−0.79; −0.41)
Bodily pain 59.38 ± 26.54 67.53 ± 23.75 <.001** −0.34 (−0.53; −0.15)
General health 62.81 ± 21.29 71.10 ± 19.52 <.001** −0.42 (−0.61; −0.22)
Vitality 53.36 ± 22.73 66.85 ± 20.39 <.001** −0.65 (−0.85; −0.45)
Social functioning 64.80 ± 27.79 78.30 ± 23.88 <.001** −0.55 (−0.74; −0.36)
Role-emotional 47.87 ± 42.60 70.02 ± 38.12 <.001** −0.57 (−0.76; −0.38)
Mental health 59.23 ± 21.69 73.82 ± 19.79 <.001** −0.73 (−0.92; −0.53)

*p < .05. **p < .01.

associated with the presence of depressive symptoms and
worse QoL (Grover et al., 2017; Guan et al., 2021; Hsiao
et al., 2017). These two factors, stigma and positive symp-
toms, are more associated with schizophrenia than BD,
which also correlates with twice the prevalence of depres-
sive symptoms found in caregivers of schizophrenic indi-
viduals in this study.
Hierarchical regression showed that caregiver factors
such as female gender, presence of clinical illness, pres-
ence of depressive symptoms and caring for schizophrenic
individuals contributed negatively to QoL scores. It is in
agreement with previous researches that demonstrated that
female caregivers present impaired QoL (Hsiao et al.,
2020; Ribé et al., 2018). In almost all domains, the pres-
ence of depressive symptoms in caregivers was the varia-
ble most associated with a decrease in QoL socres. Several
studies have shown that depression can be considered an
important predictor of decreased QoL (Jeyagurunathan
et al., 2017; Jorge et al., 2019; Opoku-Boateng et al.,
2017). Although the design of this study does not allow the
establishment of causal relationships, one hypothesis is
that depression may be acting as a mediating factor
between the patient’s diagnosis of schizophrenia and worse
QoL scores of caregivers. In this sense, caregivers of
6 International Journal of Social Psychiatry 00(0)

Table 4. Hierarchical regression for variables associated with QoL scores.

Model 1 Model 2 Model 3 Model 4 Model 5 R2 Adj

β β β β β
WHOQOL-BREF domains
Physical Gender female (caregiver) −0.22* −0.19* −0.20*
Diagnosis of schizophrenia (patient) −0.24* −0.24* −0.20*
Clinical illness (caregiver) −0.32* −0.26*
Depression (caregiver) −0.58* 0.48
Psychological Gender female (caregiver) −0.22* −0.21* −0.22* −0.20*
Years of education (caregiver) 0.19 0.19* 0.21* 0.16* 0.19*
Depression (caregiver) −0.69* 0.53
Social Diagnosis of schizophrenia (patient) −0.19* −0.21* −0.16
relationships Clinical illness (caregiver) −0.16
Depression (caregiver) −0.57* 0.33
Environmental Diagnosis of schizophrenia (patient) −0.16
Depression (caregiver) −0.60* 0.34
Overall Diagnosis of schizophrenia (patient) −0.21* −0.16
Clinical illness (caregiver) −0.23* −0.16*
Depression (caregiver) −0.61* 0.40
SF-36 domains
Physical Gender female (caregiver) −0.22* −0.20* −0.19* −0.19* −0.15
functioning Years of education (caregiver) 0.16 0.16 0.21* 0.17*
Depression (caregiver) −0.25* 0.28
Role physical Gender female (caregiver) −0.20* −0.20*
problems Age (caregiver) −0.21
Diagnosis of schizophrenia (patient) −0.27* −0.25* −0.25* −0.22
Illness duration (patient) −0.17 −0.18
Clinical illness (caregiver) −0.23* 0.15
Bodily pain Gender female (caregiver) −0.31* −0.30* −0.28* −0.27* −0.23*
Diagnosis of schizophrenia (patient) −0.17* −0.17 −0.14
Clinical illness (caregiver) −0.17 −0.42* 0.29
General health Age (caregiver) −0.20
Clinical illness (caregiver) −0.35* −0.21*
Depression (caregiver) −0.47* 0.30
Vitality Gender female (caregiver) −0.27* −0.26* −0.27* −0.25* −0.18*
Depression (caregiver) −0.46* 0.26
Social Gender female (caregiver) −0.17
functioning Depression (caregiver) −0.46* 0.19
Role emotional Gender female (caregiver) −0.22* −0.19* −0.24* −0.17
problems Diagnosis of schizophrenia (patient) −0.21 −0.21* −0.19*
Depression (caregiver) −0.38* 0.20
Mental health Clinical illness (caregiver) −0.19*
Depression (caregiver) −0.50* 0.27

Note. Models were adjusted for: model 1: caregiver variables – gender female, age, kinship parents and years of study; model 2: additionally included
patient diagnosis of schizophrenia; model 3: additionally included duration of patient’s illness; model 4: additionally included presence of clinical ill-
ness in the caregiver; model 5: additionally included presence of depressive symptoms in the caregiver.
*p < .05.

individuals with schizophrenia present higher scores of
depressive symptoms that negatively impacting their QoL.
Despite the association between depressive symptoms and
QoL, it is interesting to note that most QoL studies in car-
egivers of individuals with MD do not assess depressive
symptoms in the caregiver. Other factors that could be
expected to influence QoL scores such as caregiver’s years
of education and duration of patient’s illness, practically
were not significant in this model.
Among the limitations of this study is the cross-sec-
tional design, which does not allow the establishment of
causal associations. As a result of using self-applied instru-
ments, the validity of results is limited, as illiterate sub-
jects did not participate. It diminishes the representation of
Cohen et al.
the Brazilian population, also indicated by the low propor-
tion of D and E socioeconomic classes in the sample.
Furthermore, by having applied generic QoL instruments,
some specific characteristics concerning the care of indi-
viduals with schizophrenia or BD may not have been eval-
uated. As a result of being a specialized health care service,
these patients were probably the most severe cases, and it
may have negatively influenced caregivers’ QoL scores. In
this sense, they cannot represent the broad heterogeneity
of patients and caregivers.
It should be highlighted that this is the first study that
evaluates the QoL of caregivers of individuals with
schizophrenia and BD in Brazil applying generic instru-
ments with different constructs, thereby expanding the
range of dimensions evaluated. By using generic and
easily applicable instruments, this study can be repli-
cated in other regions of Brazil. Internationally, there are
also few studies that compare QoL of caregivers of indi-
viduals with bipolar and schizophrenic disorders, and it
is important to notice the difference of the impact on
QoL related to the mental disorder. Our results can also
be compared with caregivers of patients with other MD,
and in different countries, thus enabling the expansion of
knowledge about this subject. One of the main strengths
of this study is that it analysed the presence of depres-
sive symptoms in caregivers since most studies evaluat-
ing QoL of caregivers of patients with MD do not assess
the presence of depressive symptoms in these subjects,
which are known to be extremely high and have a major
influence on QoL (Gupta et al., 2015; Jorge et al., 2019;
Steele et al., 2010).
Finally, based on these results, we emphasize the impor-
tance of developing programs in public healthcare system
that encourage the inclusion of these relatives, seeking to
improve their QoL, and prevent or treat symptoms such as
depression and anxiety. Studies have shown that caregiv-
ers play an important role in the management and clinical
outcome of the patient, as demonstrated by better treat-
ment adherence, reduced depressive symptoms and less
chance of relapse (Gex-Fabry et al., 2015; Velligan et al.,
2010). Thus, interventions geared towards their needs such
as psychoeducational groups, development of healthy cop-
ing skills and the promotion of social support, can help not
only the caregivers, but the patients and the whole family
as well (Caqueo-Uízar et al., 2017; Gex-Fabry et al., 2015;
Sin et al., 2017).
Author’s Note
Mírian Cohen is also affiliated with Instituto de Avaliação de
Tecnologia em Saúde (IATS), Porto Alegre, Brazil. Ana Flávia
Barros da Silva Lima is also affiliated with Instituto de Avaliação
de Tecnologia em Saúde (IATS), Porto Alegre, Brazil. Clarissa
Pereira de Albuquerque Silva is also affiliated with Department
of Psychiatry, Hospital Nossa Senhora da Conceição, Porto
Alegre, Brazil. Sandro René Pinto de Sousa Miguel is also
7
affiliated with Instituto de Avaliação de Tecnologia em Saúde
(IATS), Porto Alegre, Brazil.
Acknowledgements
M. Cohen elaborated the research project, collected and analysed
the data, and wrote the paper. AFBS. Lima supervised the pro-
ject, assisted with data analysis and writing the paper. CPA. Silva
collected and analysed the data. SRPS. Miguel assisted with the
data analysis, and writing the paper. MPA Fleck supervised the
project, assisted with data analysis and elaborating the paper. All
authors contributed to and have approved the final draft.
Conflict of interest
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) received no financial support for the research,
authorship, and/or publication of this article.
ORCID iD
Mírian Cohen https://orcid.org/0000-0001-9602-0206
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