DEPRESSION AND ANXIETY 25:1020–1027 (2008)

Research Article
EMOTIONAL BURDEN IN CAREGIVERS OF PATIENTS
WITH OBSESSIVE-COMPULSIVE DISORDER
Ana Teresa de Abreu Ramos-Cerqueira, Psychologist Ph.D.,1 Albina Rodrigues Torres, M.D. Ph.D.,1
Ricardo Cezar Torresan, M.D.,1 Ana Paula Maranhão Negreiros,2 and Caroline Nakano Vitorino2

Background: The objective of this study was to evaluate the emotional burden,
psychological morbidity, and level of family accommodation in caregivers of
obsessive-compulsive disorder (OCD) patients, according to sociodemographic
and clinical factors. Methods: Fifty Brazilian DSM-IV OCD patients and their
caregivers were evaluated using the Family Accommodation Scale, the Zarit
Burden Interview (ZBI), the Self-Report Questionnaire (caregivers), the Yale-
Brown Obsessive-Compulsive Scale, and the Beck Depression Inventory
(patients). Most caregivers (80%) were aged between 30 and 59 years and
lived with the patient (88%). Results: Forty-two percent presented a common
mental disorder and their mean ZBI score was 28.9. Family accommodation
was moderate in 26% and severe or very severe in 24%. Caregivers’ levels of
psychological morbidity, accommodation, and emotional burden were associated
with each other and with the severity of patient obsessive-compulsive and
depressive symptoms. Conclusions: The results suggest that caregivers of OCD
patients have important levels of burden and psychological morbidity and should
receive orientation and support to minimize this emotional impact. Depression
and Anxiety 25:1020–1027, 2008. & 2008 Wiley-Liss, Inc.

Key words: obsessive-compulsive disorder; caregiver; burden; family accom-

modation; psychological morbidity; common mental disorders

INTRODUCTION regarding the consequences of caring for OCD

The emotional burden of those who care
for individuals presenting a mental disorder is well
established in the literature,[1,2] but the vast majority of
studies in this area focus on caregivers of patients with
dementia or psychotic disorders, such as schizophrenia
or bipolar disorder.[3–10] A review article[11] reported
that family members of psychiatric patients usually
have to face the duty of informal caring alone, without
any training, orientation, or support from health
professionals, a situation that considerably enhances
their objective and subjective burdens and may lead to
psychological problems, such as depressive and anxiety
symptoms, and impairment in their quality of life.
Shame, stigma, and guilt are common feelings among
caregivers, but a lack of research regarding family and
marital problems involving obsessive-compulsive dis-
order (OCD) exists,[12,13] particularly in developing
countries like Brazil.[14] Few systematic studies exist
sufferers, such as impact, stress, disability, burden,
hope, and coping.[12,15–20]
It is known that, due to the clinical features of this
condition, relatives are often involved in the patient’s core
1
Department of Neurology, Psychology, and Psychiatry,
Botucatu Medical School-UNESP, Botucatu (São Paulo),
Brazil
2
Botucatu Medical School-UNESP, Botucatu (São Paulo), Brazil
Correspondence to: Ana Teresa de Abreu Ramos-Cerqueira,
Departamento de Neurologia e Psiquiatria, Faculdade de Medi-
cina de Botucatu (FMB)-UNESP, Distrito de Rubião Jr., Botucatu
(SP) 18.618-970, Brazil. E-mail: ateresa@fmb.unesp.br
Received for publication 23 July 2007; Revised 13 September
2007; Accepted 19 October 2007
DOI 10.1002/da.20431
Published online 2 October 2008 in Wiley InterScience (www.
interscience.wiley.com).

r 2008 Wiley-Liss, Inc.

 Emotional Burden in Caregivers of OCD Patients
symptoms, which can alter the entire daily routine and
dominate family life,[21] with an adverse effect
on the relatives’ quality of life.[22] The patient’s obsessive
doubts, indecisiveness, constant search for reassurance,
and avoidance behaviors can lead to extreme dependence
on family members, who usually have to assume many of
the patient’s activities, duties, and responsibilities.[17]
Therefore, a phenomenon called ‘‘family accommoda-
tion’’, which describes family participation in the patient’s
rituals and modifications in daily family life to adjust to
the patient’s needs in relation to the disorder, is a frequent
finding in the context of OCD.[23] However, such
accommodation, which aims to reduce patient anxiety
and discomfort, is associated with impaired family
functioning and worse prognosis of the patient’s condi-
tion.[24,35]
Certain experiences and strategies are frequently
found among family members, such as limitations in
social life and a tendency to deny or conceal the
patient’s symptoms from other people to avoid
stigmatization and shame, thus, establishing a pact of
silence, even in relation to their own burden.[19,20]
A fear of certain symptoms, such as aggressive
obsessions, is also frequent, as well as the ambivalence
and alternation between helping the patient
with their symptoms and directly opposing them.
Sometimes the relatives are verbally or even physically
attacked by the patient when confronted with the
feared stimuli. A peregrination between different
health professionals and services is also common until
the correct diagnosis is made and the proper treatment
established.[19]
The negative impact of this situation can further
affect family members, including the occurrence of
psychiatric problems, particularly depressive and phy-
sical symptoms, and greater use of health services.[2,17]
Nevertheless, health professionals often neglect these
negative consequences in informal caregivers.
Some recent studies have evaluated different aspects
of OCD caregivers, such as coping strategies and
quality of life.[16,20,22] The lack of knowledge, help-
lessness, insecurity regarding how to deal with the
patient’s symptoms and demands, along with related
feelings, such as fear, shame, anger, frustration, and
guilt were indicated as being highly distressing.[19,20]
Stigmatization seems to be another important dimen-
sion of the suffering experienced by relatives of OCD
patients.[19] However, the scarcity of studies addressing
caregiver burden in OCD is evident. A recent review
article[8] found only two studies in this area that
analyzed caregivers’ burden, both using qualitative
methodology.[19,20] We found no studies in the
literature that analyzed the impact of OCD using
quantitative methodology to measure the level of
burden and psychological morbidity in caregivers.
Also, no previous research has evaluated the emotional
impact of caring while considering specific socio-
demographic and clinical variables, including family
accommodation.
1021
OBJECTIVES
(1) To evaluate the subjective perception of emotional
burden, the psychological morbidity and the level of
family accommodation in primary caregivers of adults
suffering from OCD; (2) to study possible associations
between these three outcomes and between these and
the sociodemographic characteristics of the caregiver
and the patient, and in relation to the clinical features of
the patient’s condition. Our hypothesis is that the
severity of patient OCD is associated with higher levels
of family accommodation and perceived burden and
psychological morbidity in caregivers.
MATERIALS AND METHODS
SUBJECTS
Fifty consecutive adult outpatients from the University Clinical
Hospital of Botucatu Medical School, São Paulo State University
(UNESP), Brazil, and their respective primary caregivers were
evaluated. Each patient indicated who they considered was their
main caregiver, according to the level of intimacy and involvement
with the problem. Inclusion criteria for patients were: (1) individuals
presenting lifetime OCD as their principal psychiatric diagnosis,
according to the Diagnostic and Statistical Manual of Mental
Disorders, fourth edition (DSM-IV) criteria[25]; (2) individuals aged
18 years and older; and (3) individuals agreeing to participate in the
study, after being fully informed about its purposes and methods. The
only exclusion criteria for patients were those presenting a serious
psychiatric comorbid condition, such as psychotic disorders, demen-
tia, or mental retardation. Exclusion criteria for caregivers were
individuals presenting OCD, or any other serious psychiatric
diagnosis, and those not willing to participate in the study.
MEASURES
Trained research assistants conducted the assessments by means of
the following instruments.
Patients. Sociodemographic and clinical variables, such as age
at the onset of symptoms and clinical course, were assessed using a
specifically created questionnaire (available on request).
Yale-Brown Obsessive-Compulsive Scale[26,27]. The
Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) was used to
assess the severity of obsessive-compulsive (OC) symptoms. It has
five items regarding obsessions and five regarding compulsions, each
score ranging from 0 to 4 (maximum score of 20 for both the
obsession and the compulsion subscales), with a maximum total score
of 40. The cutoff point for clinically significant symptoms is 16 or
more. The global score was analyzed both as a binary and as a
continuous variable.
Beck Depression Inventory[28]. The Beck Depression
Inventory (BDI) has 21 items to assess the presence and severity of
depressive symptoms, each score ranging from 0 to 3. The following
thresholds were considered: o10 5 depressive symptoms absent or
minimal; 10–18 5 mild to moderate symptoms; 19–29 5 moderate to
severe symptoms; and 30–63 5 severe symptoms. The cutoff point of
18/19 differentiated cases with clinically significant depressive
symptoms. The global score was also used as a continuous variable
in subsequent analyses.
Alcohol Use Disorders Identification Test[29]. The
Alcohol Use Disorders Identification Test has 10 questions concerning
the use of alcoholic beverages in the previous year (maximum score of 40).
The cutoff point that suggests hazardous alcohol use or dependence is 8
Depression and Anxiety
1022 Ramos-Cerqueira et al.

or more. This instrument was included because problematic drinking can, TABLE 1. Demographic and other characteristics of
of itself, be a source of considerable burden for the caregivers. OCD patients (n 5 50) and their caregivers (n 5 50)
Caregivers
[30]
Self-Report Questionnaire . The Self-Report Ques- Patients Caregivers
tionnaire (SRQ) was used to investigate the presence of psychological
morbidity or emotional suffering, known as common mental N % N %
disorders.[31] This concept includes neurotic aspects, mainly anxiety
Sex
and depressive symptoms, usually found in patients in primary care
Male 22 44.0 25 50.0
settings. The development of this instrument was coordinated by the
Female 28 56.0 25 50.0
World Health Organization to help identify mental distress that
Age (years)
usually does not fulfill specific psychiatric diagnostic criteria. It has
29 or less 14 28.0 4 8.0
20 questions and was validated in Brazil by Mari and Williams[32].
30–45 24 48.0 20 40.0
The best sensitivity (83%) and specificity (80%) values were obtained
46–59 9 18.0 20 40.0
using a cutoff point of 7/8. The same study suggests the use of a
60 or more 3 6.0 6 12.0
differential threshold score for men (5/6).[32] The global score was
Marital status
also used as a continuous variable.
Single 17 34.0 3 6.0
Zarit Burden Interview[33,34]. The Zarit Burden Inter- Married or cohabiting 27 54.0 40 80.0
view (ZBI) is the most consistently used instrument for assessing Divorced or separated 2 4.0 3 6.0
subjective burden perceived by caregivers. It is composed of 22 items, Widowed 4 8.0 4 8.0
each of them with scores ranging from 0 to 4, and the maximum Educational level
global score is 88. It was used as a continuous variable expressing the Up to 7 years of formal education 10 20.0 18 36.0
level of burden and also as a dichotomous measure; considered 8–12 years of formal education 29 58.0 17 34.0
positive with a score of 30 or more. University 11 22.0 15 30.0
Family Accommodation Scale[23]. The Family Accom- Occupational status
modation Scale (FAS) is composed of 13 items, each ranging from 0 Employed (working) 19 38.0 30 60.0
to 4 points, including participation in the patient’s rituals (items 1–5) Unemployed 11 22.0 2 4.0
and modifications in family functioning (items 6–9). A total score in Medical leave (temporary) 4 8.0 2 4.0
these nine items of up to 9 indicates mild family accommodation, Retired (time completed) 0 0.0 7 14.0
10–18 moderate, 19–27 severe, and 28–36 very severe accommoda- Retired (due to health problem) 1 2.0 0 0.0
tion. Item 10 specifically refers to the level of distress experienced by House wife 11 22.0 9 18.0
the caregiver, whereas items 11–13 are about the consequences of not Student 4 8.0 0 0.0
accommodating to the patient’s symptoms. Religious practice
DATA ANALYSIS Yes 37 74.0 41 82.0
No 13 26.0 9 18.0
Statistical analyses were conducted using the statistical package Physical health problem
STATA, version 8.0.[35] Initially a descriptive analysis was realized, Present 14 28.0 19 38.0
followed by univariate analysis of the associations between possible Absent 36 72.0 31 62.0
independent variables with the levels of the caregivers’ subjective Self-evaluation of health
burden, psychological morbidity, and family accommodation, using Good or very good 29 58.0 35 70.0
the w2 or Fisher’s exact tests (for categorical variables, as appropriate) Regular, bad, or very bad 21 42.0 15 30.0
and the Student’s t test for continuous variables. Linear regression
was used to analyze the correlations between continuous variables, OCD, obsessive-compulsive disorder.
such as scoring in the three main scales with the patients’ Y-BOCS
score. Finally, a logistic regression was conducted to adjust the
findings regarding the level of caregivers’ burden for possible
confounders, such as the patients’ depression score and caregivers’
physical health, which were significant in the previous univariate The patients’ mean age was 36.5 years (SD 12.2,
analysis. A standard significance level of Po.05 was adopted. range 17–65) and they had in average 11.7 years of
formal education (SD 4.5, range 3–26). Most
ETHICAL CONSIDERATIONS patients (64%) had a somewhat qualified occupation
The study protocol was approved by the Ethics in Research and a personal income of at least one minimum
Committee of Botucatu Medical School. All participants provided wage per month (66%). Eighteen (36%) lived
written informed consent. with their parents and siblings, 29 (58%) with their
spouses and children, and only three (6%) lived with
other relatives. The most frequent religion was Roman
RESULTS Catholic (54%), an expected result for the Brazilian
population.
DEMOGRAPHIC CHARACTERISTICS OF
All patients presented both obsessions and compul-
PATIENTS AND PRIMARY CAREGIVERS AND
sions, 68% had been previously treated in other
PATIENTS’ CLINICAL FEATURES health services, but only three had been previously
Most of the patient and caregiver demographic and hospitalized in a psychiatric ward for treatment, two of
other characteristics are described in Table 1, and which occurred in partial hospitalization services. At
patient clinical characteristics are given in Table 2. the time of the interview, 62% of the casuistic
Depression and Anxiety
 Emotional Burden in Caregivers of OCD Patients 1023

TABLE 2. Obsessive-compulsive disorder patients’ TABLE 3. Associations between the patients’ total
clinical characteristics scores in the Zarit Burden Interview, Self-Report
Questionnaire, Yale-Brown Obsessive-Compulsive Scale,
Patients (n 5 50) and Family Accommodation Scale: Linear Correlation
(Pearson)
N %
Variables r P
Age at onset of OCD symptoms
12 years or less 15 30.0 Zarit Burden Interview
13 to 17 years 17 34.0 Self-Report Questionnaire 0.31 o0.001
18 years or more 18 36.0 Family Accommodation Scale 0.52 o0.001
OCD clinical course Y-BOCS total score 0.23 o0.001
Episodic 1 2.0 Self- Report Questionnaire
Waxing and waning 32 64.0 Family Accommodation Scale 0.13 0.009
Chronic (stable) 12 24.0 Y-BOCS total score 0.08 0.04
Deteriorating 5 10.0 Family Accommodation Scale
Y-BOCS score of 16 or more Y-BOCS total score 0.26 o0.001
Yes 31 62.0
No 19 38.0 Y-BOCS, Yale-Brown Obsessive Compulsive Scale.
Alcohol problems (AUDIT score of 8 or more)
Yes 3 6.0
No 47 94.0 PREVALENCE OF COMMON MENTAL
Relevant depressive symptoms (BDI score of 19 or more)
DISORDERS OR PSYCHOLOGICAL
Yes 26 52.0
No 24 48.0 MORBIDITY IN CAREGIVERS, FAMILY
Continuous variables Mean (SD) Range ACCOMMODATION, AND BURDEN OF
Age at OC symptom’s onset 17.42 (8.21) 4–39 CARING
Y-BOCS obsession subscale score 9.94 (4.47) 2–19
Y-BOCS compulsion subscale score 10.35 (5.35) 0–19
Twenty-one caregivers (42%) scored positively for a
Y-BOCS total score 20.48 (9.21) 5–36 common mental disorder in the SRQ; however, only
BDI score 18.4 (13.18) 0–50 four (8%) were receiving some kind of psychological or
AUDIT score 1.92 (2.53) 0–10 psychiatric treatment, although 24% had received
previous mental health treatment. Five caregivers
OCD, obsessive-compulsive disorder; Y-BOCS, Yale-Brown Obses- (10%) reported no accommodation with the patients’
sive Compulsive Scale; AUDIT, Alcohol Use Disorders Identification OC symptoms at all, 20 (40%) only mild accommoda-
Test; BDI, Beck Depression Inventory.
tion, 13 (26%) moderate accommodation, eight (16%)
severe accommodation, and four (8%) very severe
accommodation. Moderate to very severe accommoda-
tion was more frequent among caregivers of patients
still presented clinically significant OC symptoms with a minimum Y-BOCS score of 16 (80%) than
(Y-BOCS total score of at least 16), whereas 38% among those with lower Y-BOCS scores (20%;
presented less severe symptoms. Problem drinking in P 5.009). The caregivers’ mean SRQ score was 6.0
the previous year was reported in only three partici- (SD 4.9, range 0–17), the mean family accommodation
pants, whereas current relevant depressive symptoms score (as measured by questions 1–9 of the FAS) was
(BDI score above 18) were present in 52% of the 11.6 (SD 9.6, range 0–33), and the mean burden (as
casuistic (Table 2). Most patients (74%) presenting a Y- measured by the ZBI) was 28.9 (SD 17.0, range 0–78).
BOCS score of 16 or more also presented clinically The correlations between the continuous measure of
relevant depressive symptoms (BDI score of 19 or caregivers’ perceived burden (ZBI score), their psycho-
more). In other words, a highly significant association logical morbidity (SRQ score), the level of family
(Po.001) occurred between OCD severity and depres- accommodation (FAS score), and the severity of
sive symptom severity. patients’ OC symptoms (Y-BOCS score) are given in
Fifty percent of the caregivers were spouses, Table 3.
38% parents, four (8%) children, and only one
sibling. No one outside the family was indicated as
the key caregiver by any patient. The vast majority RISK FACTORS FOR CAREGIVERS’ BURDEN
(88%) lived with the patient, 52% for at least 10 years,
and 58% did not share patient care with any The associations between the presence of a common
other person. Most of them (58%) were employed mental disorder or relevant psychological morbidity
and currently working, and the most frequent among caregivers (SRQ positive) and a high burden for
physical problems reported by the caregivers were caring (ZBI score of 30 or more) with the demographic
hypertension, asthma, diabetes, hypothyroidism, and and clinical characteristics of the casuistic are given in
back pain. Table 4.
Depression and Anxiety
1024 Ramos-Cerqueira et al.

TABLE 4. Caregivers’ psychological morbidity (SRQ positive) and caregivers’ burden (ZBI positive) in relation to
sociodemographic and clinical variables

SRQa ZBIb

Variables Positive (n 5 21) P Positive (n 5 20) P

Caregivers’ gender
Male 10 (40.0%) 9 (36.0%)
Female 11 (44.0%) 0.77 11 (44.0%) 0.56
Family arrangements (patient lives with)
Parents and siblings 11 (44.0%) 8 (32.0%)
Spouse and children 9 (47.4%) 10 (52.6%)
Other 1 (16.7%) 0.39 2 (33.3%) 0.36
Subjective distress for caringa
None or mild 10 (30.3%) 7 (21.2%)
Moderate, severe or very severe 11 (64.7%) 0.02 13 (76.5%) 0.08
Caregivers’ occupation
Qualifiedb 10 (34.5%) 9 (31.0%)
Nonqualified 11 (52.4%) 0.21 11 (52.4%) 0.13
Caregivers’ physical health problem
Present 9 (47.4%) 6 (31.6%)
Absent 12 (38.7%) 0.54 14 (45.2%) 0.34
Caregivers’ self-evaluation of health
Good or very good 9 (25.7%) 11 (31.4%)
Regular, bad, or very bad 12 (80%) o0.001c 9 (60.0%) 0.06
Patients’ depressive symptoms (BDI 5 419)
Yes 4 (16.7%) 16 (61.5%)
No 17 (65.4% o0.001c 4 (16.7%) 0.001
Patients’ Y-BOCS (score 5 416)
Yes 16 (51.6%) 16 (51.6%)
No 5 (26.3%) 0.079 4 (21.0%) 0.04c

SRQ, Self-Report Questionnaire; ZBI, Zarit Burden Interview; BDI, Beck Depression Inventory; Y-BOCS, Yale-Brown Obsessive–Compulsive
Scale.
a
As assessed by item 10 of the Family Accommodation Scale (FAS).
b
Occupation that requires specific training skills.
c
Fisher’s Exact Test.

Significant associations occurred between both the
presence of common mental disorders (SRQ positive)
and the high level of burden with the caregivers’
appraisal of distress for caring, their self-evaluation of
health, and the severity of the patients’ depressive and
OC symptoms (at a trend level for psychological
morbidity and OC symptoms).
In Table 5 the level of the caregivers’ burden (ZBI as
a continuous measure) is presented according to certain
significantly different demographic and clinical vari-
ables. The mean burden score was significantly higher
among those with nonqualified occupations (occupa-
tions that did not require specific training skills), with a
common mental disorder and with moderate to very
severe subjective distress for caring and family accom-
modation, as well as worse self-evaluation of health.
Moreover, the mean level of burden was significantly
higher when the patients’ OC minimum score was 16
and the depressive symptoms minimum score was 19.
No significant differences occurred between total
scores in the ZBI, SRQ, or FAS according to patient
gender, age at onset and clinical course of OCD,
caregivers’ gender, religion, educational level, physical
Depression and Anxiety
health status, sharing the patient’s care with someone
else, and living or not in the same house. Caregivers
who were employed and working showed higher mean
scores in the ZBI compared to those who were not
working (P 5.037). A worse self-evaluation of health by
the caregivers was significantly different according to
higher SRQ and ZBI scores and also tended to be
different in case of higher FAS scores (data not shown).
The adjusted associations (logistic regression results)
between caregivers’ burden and the significant inde-
pendent variables in the univariate analyses are
presented in Table 6. The only variable that remained
significantly associated with the main outcomes (high
level of burden and presence of common mental
disorders among caregivers) was the presence of
relevant depressive symptoms (BDI score 5 419)
among patients.
DISCUSSION
This is the first Brazilian study to systematically
evaluate the emotional burden, psychological morbid-
ity (presence of common mental disorders), and family
 Emotional Burden in Caregivers of OCD Patients 1025

TABLE 5. Significant associations between the mean Few studies have evaluated the burden of caring for
Zarit Burden Interview score and demographic and OCD patients and this is the first report using
clinical variables (t test) quantitative measures.[8] The mean burden score found
in this study (28.9, SD 17.0) is slightly lower than the
Mean SD P
mean scores of some studies conducted using the same
Caregiver instrument involving caregivers of elderly patients
Occupation presenting dementia or depression.[36–39] In contrast,
Qualifieda 24.6 17.5 the mean burden score of caregivers of patients is
Nonqualified 34.8 14.8 0.037 considerably higher in some studies.[40,41] This finding
Psychological morbidity (SRQ positive) is understandable considering OCD clinical features;
Yes 38.6 20.8 although some symptoms can be very incapacitating,
No 21.9 8.9 o0.001
only a few sufferers need constant supervision and
Subjective distress for caringb
None or mild 20.7 9.3
assistance from their relatives to be able to deal with
Moderate, severe, or very severe 44.7 17.6 o0.001 self-care activities. For example, only patients with very
Family accommodation severe symptoms need help taking a shower or getting
None or mild 21.0 11.2 dressed, which occurs quite frequently with psychotic
Moderate, severe, or very severe 36.8 18.4 o0.001 or demented patients. Moreover, it is very rare that
Self-evaluation of health OCD patients cannot be left alone to avoid inap-
Good or very good 24.7 12.5 propriate or dangerous behavior and, when this occurs,
Regular, bad, or very bad 38.7 22.1 0.006 it is usually at their own request, due to irrational fears
Patient of losing control and doing things they do not want to
Depressive symptoms (BDI score of 19 or more)
do. Furthermore, one third of the present casuistic had
Yes 36.9 18.5
No 20.2 9.8 0.003
already presented a significant improvement in their
Y-BOCS score 5 416 OCD symptoms with treatment, as shown by a score of
Yes 34.2 3.3 less than 16 in the Y-BOCS at the time of the interview.
No 20.3 2.3 0.004 Thus, in general, OCD patients are less likely to need
constant and direct supervision, including physical
SRQ, Self-Report Questionnaire; BDI, Beck Depression Inventory; assistance, than patients presenting other chronic
Y-BOCS, Yale-Brown Obsessive–Compulsive Scale. mental disorders. The burden, however, could be due
a
Occupation that requires specific training skills.
b to different demands, such as repeated reassurance in
As assessed by item 10 of the Family Accommodation Scale (FAS).
relation to routine activities, which can also be very
distressing.
Another aspect that could account for lower levels of
TABLE 6. Odds ratios for the caregivers’ burden (ZBI burden in this study is the fact that the caregivers’ mean
positive) regarding the patients’ Y-BOCS score, adjusted age was considerably lower than that reported in most
for the possible confounders: Beck Depression Inventory dementia studies, because many primary caregivers are
score, caregivers’ self-evaluation of health, and spouses who are usually elderly too. An alternative
accommodation to the patient’s symptoms explanation could be that the instrument used to
Adjusted OR evaluate the level of burden (ZBI) was developed to
High burden (ZBI positive) OR (95% CI) (95% CI) assess aspects that are more relevant in dementia or
psychoses than OCD.
Y-BOCS score 5 416 4.00 (1.08–14.80) 1.08 (0.19–6.13) As hypothesized, a positive and statistically signifi-
Depression score 5 419 8.00 (2.11–30.33) 5.57 (1.12–27.80) cant correlation was found between the caregivers’
(BDI positive) scores in the burden interview and their levels
Caregivers’ self-evaluation 3.27 (0.93–11.48) 2.25 (0.54–9.43)
of psychological morbidity (SRQ score) and of
of health regular, bad, or
very bad
accommodation to the patient’s symptoms (FAS
Accommodation (moderate 2.78 (0.86–9.01) 1.76 (0.43–7.20) score) as well as with the severity of patients’ symptoms
to very severe) (Y-BOCS score). Using the same aspects as categorical
variables, univariate analysis confirmed the significant
ZBI, Zarit Burden Interview; OR, odds ratios; Y-BOCS, Yale-Brown associations between clinically relevant OCD
Obsessive–Compulsive Disorder; BDI, Beck Depression Inventory. symptoms and high caregivers’ burden, high family
accommodation to the patient’s symptoms, and
presence of common mental disorder in the care-
accommodation in caregivers of patients presenting givers. Moreover, the caregiver’s emotional burden
DSM-IV OCD, using structured assessment instru- was significantly higher when they had nonqualified
ments. Sociodemographic characteristics and clinical occupations and worse self-evaluation of health,
aspects of the disorder, such as age at onset of and when they described more subjective perception
symptoms, clinical course, and severity of symptoms of distress for caring (as assessed by item 10 of
were also evaluated. the FAS).
Depression and Anxiety
1026 Ramos-Cerqueira et al.
OCD severity was highly associated (Po.001) with
the severity of depression: 74.2% of the 31 individuals
with a Y-BOCS score of 16 or more were positive in the
BDI compared to only three individuals (11.5%) with a
maximum Y-BOCS score of 15. However, in the
logistic regression, a BDI score of 19 or more,
indicating relevant depressive symptoms, was the only
variable that remained significantly associated with the
caregiver’s burden, after adjusting for possible con-
founders. Therefore, depressive symptoms may have a
specific impact on caregivers, probably due to their
interference in important relationship aspects, such as
communication, volition, and pragmatism.
Although no causal relationship can be assumed,
given the study design, it is probable that more severe
OCD symptoms lead to depressive symptoms, greater
family accommodation, greater burden, and psycholo-
gical morbidity in the caregivers. Thus considering,
depressive symptoms can be seen as factor in the causal
pathway of caregivers’ burden and not a true con-
founder; however, only longitudinal studies will be able
to properly address this issue.
Ninety percent of the caregivers in this study
reported some level of accommodation to the patient’s
symptoms and 50% reported moderate to very severe
accommodation. This finding is similar to that
reported in another study,[23] where 88.2% of family
caregivers of OCD patients described some degree of
accommodation, which was directly correlated to the
distress experienced by the same. In a recent clinical
study,[24] high modification in family function due to
OCD was one of the factors independently associated
with treatment refractoriness. Therefore, family ac-
commodation, besides increasing the burden experi-
enced by relatives, can negatively affect the clinical
course of the condition.
It is noteworthy that 42% of the family caregivers in
this study scored positively for a common mental
disorder, which was significantly associated with the
perceived burden for caring, indicating the need for
some kind of psychological assistance or support.
A study of hope and coping among 67 caregivers of
OCD patients[16] found a direct association between
the caregiver’s depressive symptoms and denial-disen-
gagement coping strategies and an inverse relation with
active framing, religiosity, and social support strategies,
indicating that appraisal influences the burden con-
sequences of caring. In this study, however, religiosity
was not associated with levels of burden (data not
shown).
Some limitations of this study should be considered.
The small sample size may have limited the study
power for some of the analyses and the specific content
of OC symptoms, which could have a differential
impact on caregivers, was not assessed. The presence of
comorbid personality disorders, which could also be a
potential source of additional burden for caregivers,
was not evaluated. The results were generated from a
university treatment program and cannot be general-
Depression and Anxiety
ized to other clinical settings or to community samples.
These findings, however, can help understand the
impact of OCD symptoms in family caregivers.
Although not to the same degree as other severe
psychiatric disorders, OCD can be a devastating
problem for family caregivers, leading to considerable
levels of family burden and psychological morbidity.
Nevertheless, the emotional impact of living and taking
care of OCD individuals has not yet been adequately
studied or acknowledged by most health professionals.
The role of depressive comorbid symptoms in the
levels of burden of OCD caregivers also warrants
further study.
A clear need exists for support and orientation
programs directed toward OCD patient caregivers,
such as psychoeducational intervention, ability train-
ing, and multifamily support groups, which could
minimize individual burden and favor the clinical
course of the patient’s disorder, due to diminished
accommodation. Family informal caregivers should not
only be considered partners in the patient’s treatment
process[19,20] and in psychiatric research,[8] but deserve
special attention from health care providers for their
own psychological morbidity and suffering.
Acknowledgments. The authors thank Ana Car-
olina R. Hercos, Aron Barbosa C. Guimarães, Mariana
de Souza Domingues, and Anna Paola Vince Chiarelli
for their assistance with some of the interviews.
Conflict of interests: none. Financial support: none.
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