healthcare

Systematic Review
Caregiver Burden among Caregivers of Patients with Mental
Illness: A Systematic Review and Meta-Analysis
Choy Qing Cham 1 , Norhayati Ibrahim 1,2, *, Ching Sin Siau 3 , Clarisse Roswini Kalaman 1 , Meng Chuan Ho 4 ,
Amira Najiha Yahya 5 , Uma Visvalingam 6 , Samsilah Roslan 7 , Fairuz Nazri Abd Rahman 8 and Kai Wei Lee 9

1 Center for Healthy Ageing and Wellness (H-CARE), Faculty of Health Sciences, Universiti Kebangsaan
Malaysia, Kuala Lumpur 50300, Malaysia
2 Institute of Islam Hadhari, Universiti Kebangsaan Malaysia, Bangi 43600, Malaysia
3 Center for Community Health Studies (ReaCH), Faculty of Health Sciences, Universiti Kebangsaan Malaysia,
Kuala Lumpur 50300, Malaysia
4 Centre for Pre-U Studies, UCSI University (Springhill Campus), Port Dickson 71010, Malaysia
5 Department of Educational Psychology & Counselling, Faculty of Education, Universiti Malaya,
Kuala Lumpur 50603, Malaysia
6 Department of Psychiatry, Hospital Putrajaya, Putrajaya 62250, Malaysia
7 Department of Foundation of Education, Faculty of Educational Studies, Universiti Putra Malaysia,
Serdang 43400, Malaysia
8 Psychiatry Department, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur 56000, Malaysia
9 Department of Medical Microbiology, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia,
Selangor 43400, Malaysia
* Correspondence: [email protected]

Abstract: Due to the increasing importance of caregivers in the treatment outcomes of patients with
mental illness, this study aimed to systematically review studies investigating the former’s caregiver
Citation: Cham, C.Q.; Ibrahim, N.;
burden and determine its prevalence. An open search, without filters, was conducted. Articles were se-
Siau, C.S.; Kalaman, C.R.; Ho, M.C.;
lected from Medline, Scopus, and PubMed from inception to 30 April 2022 using the PRISMA protocol.
Yahya, A.N.; Visvalingam, U.; Roslan,
Subgroup analyses examined the between-group differences by study setting, measurements used,
S.; Abd Rahman, F.N.; Lee, K.W.
Caregiver Burden among Caregivers
and disorder type. A total of 5034 caregivers from 23 countries were included in this review. Thirty-
of Patients with Mental Illness: A nine studies were included in the systematic review, and, among them, twenty-six were deemed
Systematic Review and eligible for meta-analysis. The overall pooled prevalence of caregiver burden among caregivers
Meta-Analysis. Healthcare 2022, 10, of individuals with mental illness was 31.67% (95% CI = 26.22–37.12). Pooled prevalence was the
2423. https://doi.org/10.3390/ highest among care recipients receiving treatment in a hospital setting (36.06%; 95% CI = 22.50–49.63),
healthcare10122423 followed by the community and clinic settings. Caregiver prevalence values were higher for burden
Academic Editor: Daniele Giansanti
measured using the Zarit Burden Interview (38.05%; 95% CI = 27.68–48.43). compared with other
instruments, and for carers of care recipients with psychosis (35.88%; 95% CI = 27.03–44.72) compared
Received: 12 October 2022 with those without. Thus, targeted interventions should focus on caregivers of patients in hospital
Accepted: 25 November 2022
settings and with psychotic symptoms.
Published: 30 November 2022

Publisher’s Note: MDPI stays neutral Keywords: caregiver burden; prevalence; mental illness
with regard to jurisdictional claims in
published maps and institutional affil-
iations.
1. Introduction
Caregiving burden is defined as the stress that derives from caring for others, while
Copyright: © 2022 by the authors.
caregiver burden is the sensation of emotional or physical tension felt by caregivers [1].
Licensee MDPI, Basel, Switzerland.
Such terms are multifaceted and aim to capture the concept behind the particular role
This article is an open access article
of caring for people from different backgrounds with varying degrees of strength and
distributed under the terms and resources, and who are dealing with illness-specific symptoms [2]. Treudley first proposed
conditions of the Creative Commons the concept in 1946, stating that caregiving has a negative impact on the caregiver’s mental
Attribution (CC BY) license (https:// health and quality of life [3]. In order to meet caregiving responsibilities, caregivers
creativecommons.org/licenses/by/ expend their physical, mental, social, and financial resources [4]. Caregiver burden is
4.0/). a widespread occurrence observed all around the world, with approximately 80% of

Healthcare 2022, 10, 2423. https://doi.org/10.3390/healthcare10122423 https://www.mdpi.com/journal/healthcare

Healthcare 2022, 10, 2423 2 of 16

caregivers experiencing it in their duties [3]. Factors such as the patient’s characteristics
(e.g., female sex, a lower educational level), carers’ attributes, the relationship between the
patient and carer (e.g., living in with the carer), time spent with the patient, and the nature
and severity of the illness could impact the intensity of the caregiver burden [5,6].
Currently, an estimated 25% of the global population is suffering from mental health
conditions, placing it as one of the most important factors contributing to the disease
burden [7]. Correspondingly, around 450 million people across the world are experiencing
mental or behavioral disorders [8]. Depression holds the highest proportion of 4.3% of
the global burden of diseases and is among the largest single cause of mental illness
worldwide [8]. Nearly 30% of people from all parts of the world suffer from mental
illness in a year. With the increasing prevalence of psychiatric illnesses, more psychiatric
patients are treated at home as compared to obtaining in-hospital treatment, which may
unintentionally increase the burden of the caregivers of these psychiatric patients [9].
However, many informal caregivers who shoulder such responsibilities may not have had
any proper training and education in providing care. Mental illness would thus have
an influence not only on the person with the condition, but also on those who care for
them [10]. Caregivers of patients with mental illness were found to have high rates of
mental health difficulties compared to the general population [11]. While the benefits and
drawbacks of providing care are not always obvious, they tend to result in high levels of
caregiver stress [6].
Due to the considerable disability associated with their condition, those suffering
from major mental illness become increasingly dependent on their caretakers. When a
person suffers from severe mental illness, he or she experiences significant functional and
role impairment, as well as employment disability. Approximately 90% of people with
serious mental illnesses are assisted practically and emotionally on a daily basis by family
carers [12]. However, many caregivers experience a significant amount of psychological
pressure and are heavily burdened as a result of their lack of preparedness for the job as an
informal caregiver [12–14]. The need and obligation to provide care deeply influence the
carers’ health, employment, social life, and relationships, leading to feelings of unhappiness
and dissatisfaction [10,15,16]. Suffering psychological distress and shouldering burdens
while caring for a mentally ill relative affects not only the caregiver’s quality of life and
health, but also their productivity as an individual and their ability to provide quality care
for the ill relative, thereby worsening the ill relative’s health and decreasing the likelihood
of recovery or health improvements [17,18].
Several reviews have looked into caregiver burden across various caregiving groups,
including carers living with patients who have dementia [6,19–23]. These reviews [6,19–23]
found that, in the 149 studies reviewed, carers’ quality of life was associated with burden
and burnout syndrome, as dementia caregivers are isolated from society because of the
nature of their caregiving responsibilities [19]. The findings also showed that there is a great
need within this population for interventions that are successful at lowering the burden
and depression symptoms [19,20]. Another review on caregivers of dementia patients
reported that female caregivers tend to be more burdened than male caregivers as females
undertake a greater amount of caregiving work [23]. Other reviews were conducted on
carers living with older relatives [24–26] and carers of cancer patients [27,28]. A number
of meta-analyses have also studied the association between caregiver burden and psycho-
logical distress, such as depression, anxiety, and stress [29–31]. Del-Pino-Casado et al. [29]
reported on the association between subjective caregiver burden and symptoms of anx-
iety across caring groups in accordance with the COSMOS-E guide’s recommendations.
Del-Pino-Casado et al. [30] examined the relationship between the subjective caregiver
load of caregivers of elderly relatives and depressive symptoms. Park and Park [31] ana-
lyzed the impact of family support programs on the caregiving burden, depression, and
stress experienced by family caregivers of dementia patients. Others have focused on
the effectiveness of interventions to ameliorate caregiver burden among carers [32,33].
Although there are several reviews and meta-analyses on caregiver burden across different
Healthcare 2022, 10, 2423 3 of 16

populations, especially in the area of dementia or neurocognitive disorders, there have not
been any studies investigating the prevalence of caregiver burden among caregivers of
individuals with mental illnesses. Data surrounding this area are thus lacking, warranting
further research.
This study aimed to provide a systematic review and meta-analysis by addressing the
prevalence of burden among caregivers of individuals with mental illness; this study thus
hopes to give more detailed insights and shed further light in the practice and research of
this particular area. The specific questions addressed in this review were as follows:
1 What is the prevalence of caregiver burden among caregivers of individuals with
mental illness?
2 Does the prevalence of caregiver burden differ according to study setting, measure-
ments used, and type of disorder?

2. Materials and Methods

2.1. Protocol
The present review was conducted in accordance with the Preferred Reporting Items
for Systematic Reviews and Meta-Analyses (PRISMA) and was registered with PROSPERO
(CRD42021255863).

2.2. Design
The present study was a systematic review and meta-analysis of quantitative studies
on caregiver burden among caregivers of patients with mental illness.

2.3. Literature Search

In compiling articles for this study, the electronic databases Medline, Scopus, and
PubMed were used. The articles were selected regardless of publication date and study
location, so long as it was published before or on 30 April 2022. An open search, without
filters, was conducted to maximize sensitivity. A combination of search terms was used to
look for relevant studies, i.e., burden* OR caregiver burden* OR burnout OR exhaustion
OR strain OR overload* OR frustrate* OR stress AND caregiver* OR informal caregiver
OR family caregiver OR carer* AND mental* OR mental illness OR mental disorder OR
mental issues OR schizophrenia OR psychiatric disorder OR psych* problem OR mental
health OR bipolar disorder OR substance abuse OR psychiatric illness OR depression OR
anxiety OR psychotic disorder OR obsessive-compulsive disorder OR behaviour disorder
OR behavioural disorder. Forward and backward searches were conducted as well to
identify suitable articles. The search strategies are shown in Table 1.

Table 1. Search terms and strategy used in PubMed, Scopus, and MEDLINE.

burden* OR caregiver burden* OR burnout OR exhaustion OR strain OR overload* OR

(1)
frustrate* OR stress
(2) caregiver* OR informal caregiver OR family caregiver OR carer*
mental* OR mental illness OR mental disorder OR mental issues OR schizophrenia OR
psychiatric disorder OR psych* problem OR mental health OR bipolar disorder OR
(3)
substance abuse OR psychiatric illness OR depression OR anxiety OR psychotic disorder
OR obsessive-compulsive disorder OR behaviour disorder OR behavioural disorder
Note. truncation technique* for SCOPUS and PubMed.
Healthcare 2022, 10, 2423 4 of 16

2.4. Study Selection

Firstly, relevant articles identified through the databases were imported into the
Endnote program X5 version and any duplicate publications were removed. This step
was performed by two investigators (C.Q.C. and C.R.K.) independently. Secondly, the
two investigators (C.Q.C. and C.R.K.) independently screened the titles and abstracts to
ensure the eligibility of the articles. Thirdly, full-text articles were assessed independently
by the same two investigators, based on the inclusion criteria mentioned below. Any
disagreements that arose were resolved through a discussion before the commencement of
the quantitative analysis.

2.5. Inclusion Criteria

Cohort studies and cross-sectional studies were eligible for quantitative analysis if
the participants in the study were the caregivers of individuals with mental illness. The
studies must also have been published in an English peer-reviewed journal. Any articles
that reported on the percentage, prevalence, or mean score of burden with any screening or
diagnostic tools were included in this study. The disorders that are listed in the Diagnostic
and Statistical Manual of Mental Disorders, Fifth Edition [34] were included in the study.
Studies on caregivers of patients with mental illness, in general, were also included.

2.6. Exclusion Criteria

Based on the authors’ consensus, we decided to exclude major neurocognitive disor-
ders or dementia, as a recent meta-analytic study had addressed this condition [21]. If the
first and second investigators (C.Q.C. and C.R.K.) had doubts concerning the eligibility
of a study to be included, then the third and fourth reviewers (K.W.L. and C.S.S.) were
involved in the decision-making process. We also excluded pilot, qualitative, validation,
psychometric, preliminary, randomized controlled trial, systematic review, meta-analysis,
treatment-related, and interventional studies. Unpublished reports, seminar presentations,
doctoral and master’s theses, and grey literature searches were not included in the study.

2.7. Data Extraction

The data were extracted and managed in a pre-designed form in Microsoft Excel. A
form listing the name of the first author, publication year, study location, study design,
study setting, sample size, and measuring instruments was then used to assess article
characteristics. Data extraction was conducted independently by three reviewers (C.Q.C.,
C.S.S., and C.R.K.), and the results of the data extraction were compared between the three
reviewers to ensure that there were no errors.

2.8. Quality Assessment

The quality of the included articles was assessed based on the Strengthening the
Reporting of Observational Studies in Epidemiology (STROBE) checklist [35]. The results
of the assessment are shown in Table S1. There are 22 proposed items in the checklist,
with items 6, 12, 14, and 15 having specific variations, which assessed 6 components for
cohort, case–control, and cross-sectional studies. The absence or presence of a component
stated in each item from the article was graded with a “0” or a “1”, respectively. Each
article was graded as “low risk of bias” if the STROBE score was ≥14/22; or “high risk of
bias” if the score was <14/22. Two investigators (C.Q.C and C.R.K.) individually assessed
the study’s quality, and any discrepancies were resolved by discussion with the third
investigator (C.S.S.). Fifteen studies scored ≥14 and were graded as having “low risk of
bias”, while 24 studies scored ≤14 and were graded as having “high risk of bias”. Studies
were nevertheless included in the analysis regardless of the STROBE score and grading
(refer to Table S1).
Healthcare 2022, 10, 2423 5 of 16

2.9. Statistical Analysis

A meta-analysis using a continuous random-effect model (DerSimonian and Laird
method) was performed. Random-effects meta-analyses allow for heterogeneity by as-
suming that underlying effects follow a normal distribution, but they must be interpreted
carefully. Heterogeneity between the trials was assessed by considering the I2 inconsistency
statistic. An I2 estimate greater than or equal to 70% was interpreted as an indication of
substantial levels of heterogeneity. If the quantitative analysis was unsuitable due to the
heterogeneity and/or a small number of studies, a narrative overview of the findings of
the included studies was presented with tabular summaries of extracted data.
Since the mean of burden was available from 26 of the articles, the mean of burden
was used to conduct the meta-analysis of this study to estimate the pooled prevalence of
caregiver burden [36,37]. Percentages and 95% confidence intervals were used as summary
statistics for the pooled prevalence. Sensitivity analyses were used to examine whether
overall findings were robust to potentially influential decisions. Prediction intervals from
random-effects meta-analyses are a useful device for presenting the extent of between-
study variation. The data from each study (care recipients, country, study design, study
setting, and measures for burden) were used to build tables for an overall description of
the included studies. As study populations and data sources differed among the included
studies, an evaluation of studies was conducted to determine whether they were suitable
for meta-analysis, and only suitable studies were included in the quantitative analysis.
Open Meta (Analyst) [38] was used to conduct the meta-analysis for this study.

2.10. Subgroup Analyses

Subgroup analyses are useful to examine the between-group differences in terms
of the prevalence as a possible cause of heterogeneity across studies. The prevalence of
caregivers of individuals with mental illness was examined by subgrouping the study
setting, measurements used, and type of disorder. The prevalence of caregiver burden was
reported in percentages with a 95% confidence interval (CI).

2.11. Sensitivity Analysis

We performed sensitivity analysis by using the leave-one-out meta-analysis to exam-
ine how each particular study altered the overall performance of the rest of the studies,
especially with regard to the pooled prevalence estimates and heterogeneity. We used the
I2 (Higgins et al. [39]) to measure the proportion of heterogeneity due to the variability of
effect estimates amongst individual studies, with values of 25, 50, and 75% indicative of
mild, moderate, and severe heterogeneity, respectively.

3. Results
3.1. Description of Included Studies
A total of 4983 articles were identified in the initial screening. After removing the du-
plicate articles (n = 598), 4385 articles were retrieved for further assessment. After screening
for suitability based on the title and abstract, 4341 articles were excluded, and 44 articles
were selected for full-text assessment. After a thorough evaluation, a total of 27 articles
were identified to be suitable to be included in the systematic review. Another 52 articles
were identified through forward and backward searches. However, of these 52 articles,
only 12 articles were deemed suitable to be included in the systematic review. Therefore, a
total of 39 articles were included in the systematic review. Among the 39 articles, 26 articles
were deemed eligible for meta-analysis (refer to Figure 1).
Healthcare 2022,10,
Healthcare2022, 10,2423
x 6 of
of1617

Figure1.1.Preferred
Figure PreferredReporting
ReportingItems
Itemsfor
forSystematic
SystematicReviews
Reviewsand
andMeta-Analyses
Meta-Analyses(PRISMA)
(PRISMA)flow
flow
diagram of the literature screening process.
diagram of the literature screening process.

Themain
The maincharacteristics
characteristicsofofthe theincluded
includedstudies
studies(n(n==39)39)were
weretabulated
tabulatedas asshown
showninin
TableS2.
Table S2.Among
Amongthe theincluded
includedstudies,
studies,23 23studies
studiesusedusedaacross-sectional
cross-sectionaldesign.
design.AAtotaltotalofof
5034caregivers
5034 caregivers fromfrom 23 countries
23 countries were included
were included in the analysis.
in the analysis. Six studiesSix studies
were conductedwere
conducted in Nigeria [18,40–44], five studies in Brazil [45–49], three
in Nigeria [18,40–44], five studies in Brazil [45–49], three studies each in Nepal [50–52] and studies each in Nepal
[50–52][53–55],
Turkey and Turkey [53–55],
two studies twoinstudies
each Hong Kong each [56,57],
in Hongthe Kong
USA[56,57],
[58,59],theandUSA [58,59],
Taiwan and
[60,61],
Taiwan
and [60,61],
one study andinone
each study
Africa each
[62], in Africa
China [62], China
[63], Chile [63], Chile
[64], Egypt [65], [64],
GreeceEgypt
[66],[65],
IndiaGreece
[67],
[66], India
Ireland [68],[67],
ItalyIreland [68], Italy
[69], Japan [70], [69],
JordanJapan
[71],[70], Jordan
Kuwait [71],
[72], Kuwait
Poland [72],
[73], Poland[74],
Portugal [73],
Singapore [75], Spain
Portugal [74], [76], and
Singapore [75],theSpainNetherlands
[76], and [77]. In terms of study
the Netherlands [77]. setting,
In terms 11 ofstudies
study
were conducted
setting, 11 studiesin the
werecommunity,
conducted18instudies in the hospital,
the community, and nine
18 studies in thestudies in the
hospital, andclinic
nine
(refer to Table S2).
studies in the clinic (refer to Table S2).
With
Withregard
regardtotothe thecare
carerecipients
recipientsofofthe thecaregivers,
caregivers,12 12studies
studieswere wereconducted
conductedon on
patients
patientswithwithmental
mental illness in general,
general, 12 12studies
studiesfocused
focusedon onpatients
patients with
with schizophre-
schizophrenia,
nia, while
while fivefive studies
studies focusedon
focused onbipolar
bipolar affective
affective disorders
disorders withwithschizophrenia-related
schizophrenia-related
disorders.
disorders. Two Twostudies
studiesfocused
focusedon onpatients
patientswithwithdepressive
depressivedisorders.
disorders.One Onestudy
studyeach each
was conducted on patients who were suffering from autism
was conducted on patients who were suffering from autism spectrum disorders, down spectrum disorders, down
syndrome,
syndrome, neurodevelopmental
neurodevelopmental disorders, disorders, neuropsychiatric
neuropsychiatric illness,
illness, minor
minorpsychiatric
psychiatric
disorders, and obsessive-compulsive
disorders, and obsessive-compulsive disorders. disorders.
The
Themostmost used instrument
used to measure
instrument caregivercaregiver
to measure burden was the Zaritwas
burden Burden
the Interview
Zarit Burden [78],
which was used in 17 of the studies. Three studies each used
Interview [78], which was used in 17 of the studies. Three studies each used the Family the Family Burden Inter-
view
BurdenSchedule
Interview[79]Schedule
and the Involvement Evaluation [80].
[79] and the Involvement Two studies
Evaluation [80]. Twoeachstudies
employed each
the
employed the Caregiver Strain Index [81] and Burden Assessment Scale [82].onOther
Caregiver Strain Index [81] and Burden Assessment Scale [82]. Other studies, the
other hand, utilized the Caregiver Burden Inventory [83], Family
studies, on the other hand, utilized the Caregiver Burden Inventory [83], Family Burden Burden Scale [84], Family
Problems
Scale [84],Questionnaire
Family Problems [85], Questionnaire
Feetham Family Functioning
[85], Scale [86],
Feetham Family PerceivedScale
Functioning Chronic[86],
Strains Scale [87], Self-Perceived Pressure by Informal Care Scale [88], Social Behavior
Perceived Chronic Strains Scale [87], Self-Perceived Pressure by Informal Care Scale [88],
Assessment Schedule [89], Burden Assessment Schedule [90], Burden Questionnaire [91],
Social Behavior Assessment Schedule [89], Burden Assessment Schedule [90], Burden
and Caregiver Burden Scale [92]. In two of the studies [45,50], the researchers constructed
Questionnaire [91], and Caregiver Burden Scale [92]. In two of the studies [45,50], the
their own questionnaire to measure caregiver burden.
researchers constructed their own questionnaire to measure caregiver burden.
 Healthcare 2022, 10, x

Healthcare 2022, 10, 2423 7 of 16

3.2. Pooled Prevalence of Caregiver Burden among Caregivers of Patients with Mental Ill
A summary of the pooled prevalence of caregiver burden among caregi
patients with mental illness is shown in Figure 2. The pooled prevalence was con
3.2. Pooled Prevalence of Caregiver Burden among Caregivers of Patients with Mental Illness
on the 26 articles that were deemed eligible for meta-analysis. The overall
A summaryprevalence
of the pooled
wasprevalence
31.67% (95%of caregiver burden among
CI = 26.22–37.12). caregivers
The highest of patients
prevalence of caregiver
with mental illness is shown
recorded was in Figure
86.51% 2. The
(95% CI =pooled prevalence
82.54–90.48), while was conducted
the lowest on the was 3.13
prevalence
26 articles that were
CI = deemed eligible
2.36–3.90). Morefor meta-analysis.
than The overall
half of the studies pooled
(n = 14) prevalence
recorded was
a prevalence of ca
31.67% (95% CI burden
= 26.22–37.12). The highest prevalence of caregiver burden recorded was
below the average prevalence of 30%, while twelve studies recorded a pre
86.51% (95% CI =of82.54–90.48), while above
caregiver burden the lowest prevalence
the average was
(refer to3.13%
Figure(95%
2). CI = 2.36–3.90).
More than half of the studies (n = 14) recorded a prevalence of caregiver burden below the
average prevalence of 30%, while twelve studies recorded a prevalence of caregiver burden
above the average (refer to Figure 2).

Figure 2. Pooled prevalence of caregiver burden among caregivers of patients with mental illness
[18,40,41,44,48–52,54–56,58–60,62–65,68–72,75,77].
Figure 2. Pooled prevalence of caregiver burden among caregivers of patients with menta
[18,40,41,44,48–52,54–56,58–60,62–65,68–72,75,77].
3.3. Subgroup Analysis for the Prevalence of Caregiver Burden among Caregivers of Patients with
Mental Illness According to Study Setting, Instruments, and Type of Mental Illness
3.3. Subgroup
Table 2 summarizes theAnalysis
subgroupfor analysis
the Prevalence of pooled
of the Caregiver Burden among
prevalence Caregivers of Patie
of caregiver
with Mental Illness According to Study Setting, Instruments, and
burden among caregivers of patients with mental illness according to study setting Type of Mental
and Illness
instruments used, as Table
well as2 the
summarizes
disorders.the subgroup
Forest analysis
plots for of the pooled
study setting, prevalence of ca
the instruments
burden among caregivers of patients with mental illness according
used, and the disorders are shown in Figure 3, Figure 4, and Figure 5, respectively (refer to study sett
to Figures 3–5). instruments used, as well
The pooled prevalence ofas the disorders.
caregiver burdenForest plots foramong
was highest study thesetting,
care the instr
used, andtreatment
recipients who received the disorders
in a are shown
hospital in Figures
setting 3, 4, 95%
(36.06%; and 5, CIrespectively
= 22.50–49.63), (refer to Fig
5). The pooled
followed by the community prevalence
setting (28.28%;of95%
caregiver burden waswhile
CI = 18.97–37.58), highest
theamong
lowest the care recipien
pooled
receivedburden
prevalence of caregiver treatment
amongin the
a hospital setting who
care recipients (36.06%; 95%CI
received = 22.50–49.63),
treatment was in afollowed
clinic setting (27.52%; 95% CIsetting
community = 14.78–40.26).
(28.28%;Subgroup analysis according
95%CI = 18.97–37.58), whileto thethelowest
instrument
pooled preva
used showed that the highest burden of care was were reported in studies
caregiver burden among the care recipients who received treatment was using the Zaritin a clinic
Burden Interview (36.90%;
(27.52%; 95% CI
95%CI = 28.17–45.62).
= 14.78–40.26). In termsanalysis
Subgroup of the type of disorder,
according to thetheinstrumen
pooled prevalence of caregiver
showed that theburden wasburden
highest highestof among
care the
wascaregivers
were reportedof careinrecipients
studies using th
who suffered from psychotic
Burden disorders
Interview (35.88%;
(36.90%; 95%=CI
95%CI = 27.03–44.72)
28.17–45.62). In (refer
terms to ofTable 2). of disord
the type
pooled prevalence of caregiver burden was highest among the caregivers
recipients who suffered from psychotic disorders (35.88%; 95%CI = 27.03–44.72) (
Table 2).
Healthcare 2022, 10, 2423 8 of 16

Table 2. Subgroup analysis of pooled prevalence of caregiver burden among caregivers of patient
with mental illness.

Variables No. of Studies Prevalence, % 95% CI I2 , % p-Value

Community
8 28.28 18.97–37.58 99.74 <0.001
(Subgroup c)
Clinic
6 27.52 14.78–40.26 99.87 <0.001
Study setting (Subgroup b)
Hospital
12 36.06 22.50–49.63 99.89 <0.001
(Subgroup a)
Subtotal 26 31.67 26.22–37.12 99.85 <0.001
The Zarit Burden Interview
13 36.90 28.17–45.62 99.26 <0.001
(Subgroup 0)
Instruments Others
13 26.47 19.55–33.40 99.90 <0.001
(Subgroup 1)
Subtotal 26 31.67 26.22–37.12 99.85 <0.001
With psychosis
14 35.88 27.03–44.72 99.88 <0.001
Healthcare 2022, 10, x (Subgroup 1) 8 of 17

Disorders Without psychosis

12 26.82 17.98–35.67 99.82 <0.001
(Subgroup 0)
Subtotal 26 31.67 26.22–37.12 99.85 <0.001

Figure 3. Subgroup forest plot on the study setting (Community: [50,58,64,68–70,75,77]; Clinic:
[40,49,54,56,59,71]; Hospital: [18,41,44,48,51,52,55,60,62,63,65,72]).
Figure 3. Subgroup forest plot on the study setting (Community: [50,58,64,68–70,75,77]; Clinic:
[40,49,54,56,59,71]; Hospital: [18,41,44,48,51,52,55,60,62,63,65,72]).
 Figure 3. Subgroup forest plot on the study setting (Community: [50,58,64,68–70,75,77]; Clinic:
[40,49,54,56,59,71]; Hospital: [18,41,44,48,51,52,55,60,62,63,65,72]).
Healthcare 2022, 10, 2423 9 of 16

Healthcare 2022, 10, x 9 of 17

Figure 4. Subgroup forest plot on the types of measurement used (Zarit: [44,50–
52,55,56,58,60,63,71,72,75,77]; Others: [6,18,40,41,48,49,54,62,64,65,68–70]).

Figure 4. Subgroup forest plot on the types of measurement used (Zarit: [44,50–52,55,56,58,60,63,71,72,75,77];
Others: [6,18,40,41,48,49,54,62,64,65,68–70]).

Figure 5. Subgroup forest plot of psychotic and non-psychotic disorders (Psychosis: [44,51,52,56,58,
59,62,64,68–70,72,75]; Non-psychosis: [18,40,41,48–50,54,55,60,65,71,77]).
Figure 5. Subgroup forest plot of psychotic and non-psychotic disorders (Psychosis:
[44,51,52,56,58,59,62,64,68–70,72,75];
4. Discussion Non-psychosis: [18,40,41,48–50,54,55,60,65,71,77]).
To the best of our knowledge, this review is the first systematic review and meta-
Table 2. Subgroup analysis of pooled prevalence of caregiver burden among caregivers of patient
analysis on the caregiver burden of carers for individuals with mental illness. We aimed to
with mental illness.
investigate the prevalence of burden among caregivers of individuals with mental illness.
A total of 5034 caregivers from 23 No. of Prevalence,
countries were included in the analysis. Thirty-nine
Variables 95% CI I2, % p-Value
articles were included in the systematic
Studiesreview%and 26 articles were deemed eligible for
Community
8 28.28 18.97–37.58 99.74 <0.001
(Subgroup c)
Clinic
6 27.52 14.78–40.26 99.87 <0.001
Study setting (Subgroup b)
Healthcare 2022, 10, 2423 10 of 16

meta-analysis. Subgroup comparisons across study settings, the measurement used, and
the type of mental illness were conducted. The main finding of this study was that the
overall pooled prevalence of caregiver burden among caregivers of individuals with mental
illness was 31.67%. Subgroup analyses showed that caregivers in hospital settings (36.06%),
studies using the Zarit Burden Interview (36.90%), and caregivers of individuals suffering
from psychosis (35.88%) recorded significantly higher prevalence values.
In this study, we found that nearly one third of caregivers of individuals with mental
illness, excluding major cognitive disorders, suffered from caregiver burden. The caregiver
burden prevalence of 31.67%% found in our study, however, is lower than the prevalence
of caregiver burden found in other meta-analytic studies [20,93] which cover a wide range
of conditions, including physical and mental illnesses. For example, the pooled prevalence
of caregiver burden among caregivers of dementia patients was nearly twice as high, at
49.26% [20]. On the other hand, a meta-analysis conducted in Iran on the caregiver burden
of carers for chronic illness patients showed that more than half (53.28%) had caregiver
burden, and the prevalence of caregiver burden for mentally ill patients (58.7%) was
comparable to that of Alzheimer’s patients (57.1%) [93]. A meta-analysis that compared the
caregiver burden of carers for physical vs. mental illnesses showed that carers for patients
with physical illnesses recorded significantly lower caregiver burden mean scores than
those with cognitive impairment or dementia, Alzheimer’s, and mental illnesses [94]. As
the heterogeneity between studies included in this meta-analysis was high, there may be a
need to examine further the factors that contributed to the high variances, and the reasons
contributing to the lower prevalence.
This study also found that carers for mentally ill individuals within the schizophre-
nia spectrum disorder or with psychosis recorded a higher caregiver burden prevalence
(35.88%) than for carers in studies that did not mention the presence of psychosis in the
patients (26.82%). Caregivers who care for patients with psychotic symptoms face a greater
burden than those who care for patients with bipolar disorders, with a higher burden
reported by laborers and housewives [95]. Symptoms of psychosis, such as disorganized
thoughts, hallucinations, and delusions, may require constant supervision to ensure the
patient’s personal hygiene and grooming and prevent the patient from engaging in negative
behaviors such as skipping medication [95,96]. The greater burden felt by caregivers of
schizophrenia patients may also be due to the need for caregiving even during remission,
and the social exclusion experienced by the caregivers or patients [95]. The caregiver
burden of schizophrenia patients was higher among older and unemployed individuals,
mothers, those reporting lower educational levels, and caretakers of younger patients [64].
Moreover, a study further found that the caregiver burden may be due to higher psycho-
logical morbidity and maladaptive coping in caregivers or schizophrenia patients [97].
Another study reported that, compared to carers of patients with depression, a significantly
higher percentage of carers of patients with schizophrenia reported worrying about the
future and finances of the patient [98]. Carers of schizophrenia patients also reported
providing more motivation and encouragement to schizophrenia patients in the latter’s
care [98]. Greater worry and the provision of nursing care may have contributed to a greater
burden among carers for patients with psychosis or schizophrenia spectrum disorders.
Moreover, the higher stigma against individuals with schizophrenia vs. depression or
other mental illnesses, particularly in terms of perceptions of dangerousness and negative
stereotyping for schizophrenia patients [99,100], may further isolate the caregiver from
sources of social support.
Caregivers of individuals with mental illness in hospital settings in this study reported
a higher caregiver burden compared with those in clinic and community settings. The
characteristics of the patients requiring hospitalization may indicate a need for greater
care, such as a more severe presentation of the mental illness symptoms or exhibiting self-
harm or suicidal behaviors [101,102]. A study found that patients who were involuntarily
admitted to the hospital had a higher likelihood of more severe psychotic symptoms,
aggressive behavior, and medication non-adherence [101]. Caregiver burden may be a
Healthcare 2022, 10, 2423 11 of 16

factor determining the decision to institutionalize older people in hospital settings [103].
Limited engagement with the healthcare system due to a lack of health literacy, perceptions
of ineffective healthcare provided, and limited access to healthcare services has been
associated with greater caregiver burden [2]. In another study on caregiver burden among
carers of children with neurodevelopmental disabilities, caregivers experienced a greater
burden when they found it difficult to access and navigate within the healthcare system or
reported unmet healthcare needs [104]. Therefore, caregivers of hospital-dwelling patients
may be experiencing a higher caregiver burden as they may lack the support provided by
the healthcare system.
The Zarit Burden Interview (ZBI) is the most commonly used instrument to measure
caregiver burden. The findings are consistent with a review of instruments measuring
caregiver burden for mental illness patients conducted by Schulze and Rössler [105]. The
other instruments used to measure caregiver burden are the Family Burden Interview
Schedule [80], Involvement Evaluation [80], Caregiver Strain Index [81], Burden Assessment
Scale [82], Caregiver Burden Inventory [83], Family Burden Scale [84], Family Problems
Questionnaire [85], Feetham Family Functioning Scale [86], Perceived Chronic Strains
Scale [87], Self-Perceived Pressure by Informal Care Scale [88], Social Behavior Assessment
Schedule [89], Burden Assessment Schedule [90], Burden Questionnaire [91], and Caregiver
Burden Scale [92].
Despite the use of a number of validated questionnaires, two of the studies reviewed
used a self-designed or adapted questionnaire [45,50]. It was interesting to note that the
caregiver burden prevalence using the Zarit Burden Interview was higher (36.90%) in com-
parison with studies utilizing other instruments (26.47%). The difference may be attributed
to the fact that these questionnaires were originally developed for measuring caregiver
burden among different populations, and they have different factor structures and target
populations. For example, the ZBI was developed with the purpose of measuring the
burden of caregivers for dementia patients and is now considered the gold standard and a
generic measurement for caregiver burden for diverse diseases. Meanwhile, the Involve-
ment Evaluation Questionnaire was used more specifically to assess the caregiver burden
among those caring for patients with severe mental illnesses such as schizophrenia [74].
The Caregiver Burden Inventory, on the other hand, provides a multidimensional view
of caregiver burden (time dependence, developmental, physical, social, and emotional
burden) and may be useful in providing specific areas for intervening with caregiver bur-
den based on these dimensions [83]. Future studies estimating the prevalence of caregiver
burden should specify which questionnaire they are using and note the tendency for the
ZBI to yield a higher estimated prevalence of caregiver burden.
More than half (62%) of the included studies in our review had a high risk of bias.
There were 24 articles with a “high risk of bias”, while the remaining studies were graded
as having a “low risk of bias” (n = 15). Items in the STROBE checklist, such as “use of a flow
diagram”, “sources of bias”, and “sample size calculation”, were not commonly reported.
Two studies used self-designed questionnaires to measure caregiver burden, which may
have resulted in limited comparison with studies using commonly used scales such as the
Zarit Burden Interview. As a result of the high risk of bias of 24 studies and variations
in the caregiver burden measurement tools, only a small selection of research could be
included for meta-analysis. This research has some limitations. The search technique was
confined to peer-reviewed and published articles in international databases. Unpublished
reports, seminar presentations, doctoral and master’s theses, and grey literature searches
were not included in the study. The pre-specified criteria for this study may be too narrow,
resulting in the exclusion of potentially relevant studies from our analysis. All the research
considered in this review used cross-sectional designs, which prevented causal conclusions
from being drawn. The use of several scales to measure caregiver burden may have
contributed to the higher heterogeneity between studies. In addition, we found high levels
of within-group heterogeneity to be present among subgroups, indicating that these groups
may not account for the variance between studies and that the results of subgroup analyses
Healthcare 2022, 10, 2423 12 of 16

may need to be interpreted with caution because of uneven covariate distributions among
groups. As a result, it would be worthwhile to conduct additional studies to address
these constraints.

5. Implications
The results of this study support a renewed emphasis on interventions to identify
the caregiver burden for the growing number of informal caregivers. The findings of this
study have drawn attention to the possibility that caregivers of individuals with mental
illness may require psychological help in order to cope with the burden that they face. By
taking care of loved ones at home, caregivers significantly contribute to the reduction of
expenses and resources for the healthcare system. Therefore, it is essential to provide a
support framework to lessen the burden on caregivers. There also appears to be a lack of
cohort studies addressing caregiver burden, which could provide higher-quality evidence
of caregiver burden across time. Researchers choosing measurement tools to measure
caregiver burden should be aware that the Zarit Burden Interview may provide higher
burden scores in comparison with other instruments measuring caregiver burden.

6. Conclusions
In conclusion, this study revealed that nearly one third of the caregivers experienced
a burden when taking care of individuals with mental illness. This study suggests that
the prevalence of caregiver burden was significantly higher for carers in hospital settings,
studies utilizing the Zarit Burden Interview, and caregivers of individuals with psychosis.
Given their increasing importance in the treatment outcomes of psychiatric patients in
the age of deinstitutionalization, caregivers of people with mental illness should therefore
receive more attention.

Supplementary Materials: The following supporting information can be downloaded at: https://
www.mdpi.com/article/10.3390/healthcare10122423/s1, Table S1: Strengthening the Reporting of
Observational Studies in Epidemiology (STROBE) of Included Studies, Table S2: Characteristics of
Included Studies.
Author Contributions: Conceptualization, C.Q.C., C.S.S., K.W.L. and N.I.; Data curation, C.Q.C.,
C.S.S. and C.R.K.; Formal analysis, C.Q.C., K.W.L. and C.S.S.; Methodology, C.Q.C., K.W.L. and
N.I.; Supervision, N.I. and C.S.S.; Validation, A.N.Y., U.V., F.N.A.R. and S.R.; Visualization, C.Q.C.;
Writing—original draft, C.Q.C., M.C.H., N.I., K.W.L., C.S.S., C.R.K., A.N.Y., U.V., F.N.A.R. and S.R.
All authors have read and agreed to the published version of the manuscript.
Funding: This research received its funding from the Fundamental Research Grant Scheme
(FRGS/1/2020/SS0/UCSI/02/1) from the Ministry of Higher Education, Malaysia. The funder
had no role in the study design, data collection and analysis, decision to publish, or preparation of
the manuscript.
Institutional Review Board Statement: Not applicable.
Informed Consent Statement: Not applicable.
Data Availability Statement: Not applicable.
Acknowledgments: We would like to thank H.W.Y. for proofreading this manuscript.
Conflicts of Interest: The authors declare that they have no competing interests.

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