NeuroRehabilitation 31 (2012) 443–452 443

DOI 10.3233/NRE-2012-00815
IOS Press

Factors associated with depression and

burden in Spanish speaking caregivers of
individuals with traumatic brain injury
Lillian Flores Stevensf,∗, Juan Carlos Arango-Lasprillab , Xiaoyan Dengc , Kathryn Wilder Schaafa,
Carlos José De los Reyes Aragónd , Marı́a Cristina Quijanoe and Jeffrey Kreutzera
a
Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA, USA
b
IKERBASQUE, Basque Foundation for Science, University of Deusto, Bilbao, Spain
c
Department of Biostatistics, Virginia Commonwealth University, Richmond, VA, USA
d
Department of Psychology, Universidad del Norte, Barranquilla, Colombia
e
Department of Social Sciences, Pontificia University Javeriana of Cali, Colombia
f
Hunter Holmes McGuire Veterans Adminstration Medical Center, Richmond, VA, USA

Abstract. Objective: To determine which factors are highly associated with burden and depression in a group of caregivers of
persons with Traumatic Brain Injury (TBI) in Colombia, South America.
Design: Prospective.
Participants: Fifty-one pairs of individuals with TBI and their caregivers from two major cities in Colombia completed a
comprehensive psychosocial evaluation that included information related to patient and caregiver sociodemographic factors,
patient factors, and caregiver estimation of patient neurobehavioral functioning.
Outcome measures: Caregiver burden (Zarit Burden Interview) and caregiver depression (PHQ-9).
Results: Generalized linear models revealed that patient language problems and caregiver perception of patient functioning
on six neurobehavioral domains were related to caregiver burden. Caregiver socioeconomic status and caregiver perception of
patient functioning on six neurobehavioral domains were related to caregiver depression. These variables were then selected as
candidates for the multiple regression models, which were fit separately for caregiver depression and burden, and revealed that
caregivers’ perception of patient depression was the only factor associated with both caregiver burden and depression.
Conclusion: Caregivers’ perception of patient depression was the single best predictor of both caregiver burden and depression.
Implications for treatment based on these preliminary findings are discussed.

Keywords: Caregivers, depression, burden

1. Introduction
Traumatic brain injury (TBI) is one of the leading
causes of death and disability around the world [1].
In the United States, TBI contributes to a third of all
injury-related deaths, with an estimated 1.7 million
people sustaining a TBI each year [2]. In Latin Ameri-
∗ Corresponding
author: Lillian Flores Stevens, PhD, Hunter
Holmes McGuire VAMC, 1201 Broad Rock Boulevard (116-B),
Richmond, VA 23249, USA. Tel.: +1 804 675 5000; ext, 2859; Fax:
+1 804 675 5312; E-mail: Lillian.Stevens@va.gov.
ca, the incidence of TBI due to road traffic injuries and
violence is higher than in any other world region [3,
4]. TBI often results in cognitive [5,6], behavioral, and
emotional deficits [7,8] which can negatively impact
the injured individual’s ability to lead an independent
life, maintain employment, and sustain relationships [9,
10].
Because of the wide-ranging difficulties associated
with TBI, individuals often require supervision and
support from caregivers, most typically spouses or par-
ents [11]. Being a caregiver for an individual with TBI
can have a profound impact on psychosocial function-
ing. TBI caregivers often experience financial difficul-

ISSN 1053-8135/12/$27.50  2012 – IOS Press and the authors. All rights reserved
444 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden
ties [12,13], disruptions in employment [14], marital
problems [15], social isolation, reduced social adjust-
ment [12,13], poorer quality of life [16], lower per-
ceived health [17], and higher consumption of prescrip-
tion and nonprescription drugs [12–14]. TBI caregivers
also have higher rates of psychiatric morbidity [16]
than the general population, and may experience sig-
nificant levels of stress, anxiety, depression [18–21],
and burden [12,13,18].
Depression and burden are the most common psy-
chosocial problems reported by caregivers of individ-
uals with TBI. Most TBI caregivers experience some
level of burden [12,13], which has been characterized
as a multidimensional response to the various stressors
associated with caregiving [22]. The physical, psycho-
logical, and financial toll of caregiving [23] can be sub-
stantial, and caregiver burden can remain present for
many years after the injury [24]. Rates of depression
among TBI caregivers are also high (22% to 77%; [25]),
and symptoms can persist for years after the onset of
TBI [26]. Depression and burden among caregivers of
individuals with various health conditions or cogni-
tive impairment often result in negative consequences
for both the caregiver and patient, such as unneces-
sary patient hospitalization [27] and increased use of
formal services such as paid individuals that provide
in-home help with personal care or home maintenance
tasks [28].
Because of the prevalence, severity, and persistence
of burden and depression among TBI caregivers, sev-
eral researchers have attempted to determine which pa-
tient and/or caregiver factors can predict these neg-
ative outcomes. Some of the patient characteristics
found to be associated with caregiver burden and de-
pression include higher social isolation [19], lower
physical functioning, higher need for supervision, poor
satisfaction with life, and excessive alcohol use [25].
Caregiver characteristics found to be associated with
these outcomes include the use of escape-avoidance
coping strategies, poor social support [24,29], unmet
needs [20], physical health problems, and use of inef-
fective problem solving techniques [30].
Most recently, researchers have become interested in
determining whether patients’ actual functioning or the
caregivers’ subjective estimation of patient functioning
is a more important predictor of caregiver outcome. To
date, six studies have examined this relationship with
mixed results. Caregiver estimation of patient physical
changes, number of patient behavioral problems, and
amount of patient social contact have been found to be
predictive of caregiver burden [12,13,19,31]. Howev-
er, results for caregiver depression are contradictory.
One study found that caregivers’ report of patient neu-
robehavioral problems does predict caregiver depres-
sion [18]; however, other studies found no relationship
between caregivers’ perception of patient functioning
and caregiver depression [12,13,19,32].
In summary, the existing literature points to various
factors that can predict caregiver depression and bur-
den. These factors can be roughly grouped into three
categories: patient characteristics (e.g., sociodemo-
graphic variables, injury severity, cognitive and neu-
robehavioral functioning, etc.), caregiver characteris-
tics (e.g., sociodemographic variables, relationship,
etc.), and caregiver perceptions (of patient functioning,
of their own coping, of impact on family, etc.). How-
ever, the majority of studies that attempt to determine
predictors of caregiver burden and depression fail to
include all categories of variables. Further, most stud-
ies that examine the role of subjective caregiver per-
ceptions of patient functioning do not include objective
data regarding the TBI patients’ actual functioning.
The aim of the present study is to determine which
factors are highly associated with burden and depres-
sion in a group of caregivers of persons with TBI. In
order to address a noted methodological limitation, this
study includes factors from all three categories (patient
characteristics, caregiver characteristics, and caregiver
perception of patient functioning). This study also in-
cludes both objective reports of patient functioning and
subjective caregiver perceptions of patient functioning.
As this study utilizes a sample from Colombia, South
America, and Hispanic cultures tend to be more family-
oriented [33], it is expected that caregiver perceptions
of the patient’s functioning will play a larger role in
determining caregiver burden and depression.
2. Method
2.1. Participants
Fifty-one pairs of Colombian TBI survivors and their
caregivers participated in this study. TBI survivors were
included if they (1) had a diagnosis of TBI, (2) were
six months or more post injury, (3) had no prior or
current substance abuse, (4) had no prior neurological
or psychiatric conditions, and (5) had no prior learning
disability. Caregivers were included if they (1) were
classified as the primary caregiver of a TBI survivor,
(2) functioned as the primary caregiver of the TBI sur-
vivor for six or more months, (3) had no prior or current
 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden
neurological or psychiatric disorders, and (4) had no
prior or current learning disability.
Twenty-one caregiver-patient pairs (41%) were re-
cruited from Clı́nica Cervantes hospital in Barranquil-
la and 30 pairs (59%) from Hospital del Valle in Cali.
Clı́nica Cervantes hospital is an urban, level IV medi-
cal center. The Hospital del Valle in Cali is an urban,
public teaching hospital and is the only public level III
and IV center for the management of brain injury in
southwest Colombia.
Most caregivers in this study were female (75%) and
averaged 39.9 years of age (SD = 15.6). Regarding
their relationships to the patient, 27.5% of caregivers
were spouses, 23.5% were parents, 25.5% were sib-
lings, 9.8% were children, and 13.7% were other (e.g.,
roommates, professional caregivers, friends, or other
family members). The majority of caregivers were mar-
ried (33.3%), 29.4% were single, 27.5% were cohab-
iting, 5.9% were widowed, and 3.9% were separated.
The caregivers had an average of 10.6 (SD = 4.5) years
of education. Most caregivers (86%) were in the low-
est three levels of the SES classification system used
in Colombia. This system is based on income and the
location of residence, ranging from 1 (low) to 6 (high).
The majority of survivors (71%) were male and av-
eraged 33.2 years of age (SD = 9.9). They had an av-
erage of 11.4 (SD = 3.9) years of education and 43%
were single. Most survivors (84%) were in the low-
est three levels of the SES classification system used
in Colombia. The majority of injuries (82.4%) were
caused by accidents (car, motorcycle, bicycle or pedes-
trian), 13.7% were by an act of violence, and 3.9% were
caused by other means. Median length of injury was
11 months (interquartile range; IQR: 7 to 19). Average
total Glasgow Coma Scale (GCS) score was 10 (SD =
3.1), indicating moderate to severe impairment [34].
More specifically, 13% had mild injury, 51% had mod-
erate injury, and 36% had severe injury.
2.2. Independent variables
Independent variables were grouped into three cat-
egories. The first category, caregiver factors, consist-
ed of age (in years), gender (male vs. female), mari-
tal status (single, married, divorced, separated, or co-
habiting), education (in years), socioeconomic status
(continuous; ranging from 1 [low] to 6 [high], reflect-
ing the Colombian government’s classification system
based on income and location of residence), and rela-
tionship with patient (spouse, parent, sibling, child, or
other). The second category, patient factors, consisted
445
of time since injury (in years), objective cognitive per-
formance (measured using all subscales and total score
of the NEUROPSI), and depression (measured using
the PHQ-9). The third category, caregiver’s evaluation
of the patient, consisted of the caregivers’ report of the
patients’ neurobehavioral functioning (measured using
the six caregiver-completed NFI subscale scores).
2.2.1. NEUROPSI
In order to measure the objective neuropsycholog-
ical functioning of TBI survivors, the total score on
a comprehensive Spanish-language neuropsychologi-
cal instrument (NEUROPSI [35]) was used. The NEU-
ROPSI was designed as a basic neuropsychological
battery to assess six domains: Orientation; Atten-
tion/Concentration; Memory; Language; Visuomotor;
and Executive Function. Total scores range from 2 to
130, with higher scores indicating better cognitive func-
tioning. This test has age and education norms based on
a sample of 800 monolingual Spanish speakers aged 16
to 85 years. Norms are broken down based on four age
groups (16 to 30 years, 31 to 50 years, 51 to 65 years,
and 66 to 85 years) and four education levels (0 years
of education, 1 to 4 years, 5 to 9 years, and 10 or more
years of education). Though norms are not yet avail-
able for various clinical subgroups, including TBI, the
NEUROPSI can be used as a reliable assessment of
cognitive functions [35].
2.2.2. The Neurobehavioral Functioning Inventory
(NFI)
The Neurobehavioral Functioning Inventory (NFI) is
a 76-question self-report measure focusing on behav-
iors and symptoms commonly associated with brain in-
jury [36]. Each item is rated for frequency of problem
occurrence using a 5-point Likert scale (1 = never, 2 =
rarely, 3 = sometimes, 4 = often, and 5 = always).
Factor analysis has identified six primary subscales rep-
resenting the following domains: Depression, Somatic,
Memory/Attention, Communication, Aggression, and
Motor [37]. Though each subscale differs in terms of
the number of items and possible score, higher scores
for all subscales indicate poorer functioning. The NFI
has parallel patient and family forms so that self-report
data regarding the individual with TBI can be obtained
from both the injured individual’s and caregiver’s per-
spectives. In the present study, both the individual with
TBI and his/her caregiver completed the Spanish ver-
sion of the NFI separately. The NFI has been translated
into Spanish, and its reliability and validity have been
well established in both Spanish speaking survivors of
TBI and their caregivers [38].
446 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden
2.3. Dependent variables
For the present study, two dependent variables were
selected: caregiver depression (measured using the
PHQ-9 total score) and caregiver burden (measured us-
ing the Zarit Burden Interview total score).
2.3.1. The Zarit Burden Interview (ZBI)
The Zarit Burden Interview (ZBI) is the most widely
referenced scale used to assess caregiver burden [39].
This self-administered scale consists of 22 items re-
garding how the caregiver feels about their relationship
with the patient, their health condition, finances, psy-
chological wellbeing, and social life [23]. Responses
can range from ‘never’ to ‘nearly always’. A higher
score correlates with a higher level of burden and the
following categories have been developed: 0–20 points
indicate little or no burden, 21–40 points reflect mild
to moderate burden, 41–60 points indicate moderate to
severe burden, and 60–88 points reflect severe levels
of burden [23]. The Spanish version used in this study
has demonstrated good internal reliability [40].
2.3.2. The Patient Health Questionnaire (PHQ)
The Patient Health Questionnaire (PHQ) is a self-
administered examination used to diagnose mental dis-
orders. The PHQ-9 is the module of the PHQ that
specifically evaluates for depression. The PHQ-9 is a
reliable and valid measure of the severity of depressive
symptoms and is regarded as highly useful in both clin-
ical and research applications [41]. The examination
consists of nine items that reflect typical symptoms of
depression. The response choices are designed to as-
sess how often each problem has bothered the respon-
dent over the preceding two weeks, and range from
0–3 (‘not at all’ to ‘nearly every day’). Higher scores
reflect higher levels of depressive symptoms, and cat-
egories regarding severity of depressive symptoms are
also available. Total score ranges of 0–4 indicate no
depression, 5–9 indicate mild depression, 10–14 indi-
cate moderate depression, 15–19 indicate moderately
severe depression, and 20–27 indicate severe depres-
sion. The PHQ-9 is often used in epidemiological stud-
ies and in clinical primary care settings, and can be
given in English or Spanish. The Spanish version used
for this study [42], has been found to be reliable and
valid in assessing depression in Spanish speakers [43,
44].
2.4. Procedure
Researchers reviewed medical records to identify in-
dividuals with TBI who were treated at two hospitals
in Colombia (Clı́nica Cervantes hospital in Barranquil-
la and Hospital del Valle in Cali). Each candidate and
his/her caregiver were screened by telephone to deter-
mine if they met inclusion and exclusion criteria. After
the details of the study were explained to each eligible
candidate, individuals who expressed interest were in-
vited to participate. Once the individuals with TBI and
their caregivers agreed to participate in the study, they
were asked to sign a form that indicated their informed
consent in accordance with regulations approved by
the ethics committee of Universidad del Norte in Bar-
ranquilla and Universidad Javeriana in Cali. All of the
participants completed an interview with a graduate
student under the supervision of a university profes-
sor. The student collected information regarding patient
and caregiver sociodemographic characteristics and ad-
ministered questionnaires related to patient factors and
caregiver perception of patient neurobehavioral func-
tioning as described above.
2.5. Data analysis
All statistical analyses were conducted using SPSS
for Windows, Version 19 (IBM). The primary hypothe-
sis aims to determine the predictors of caregiver burden
and depression. As these two variables were not nor-
mally distributed, log transformations were performed
on both. The resulting transformed data did follow a
normal distribution reasonably well and therefore, anal-
yses were performed using the log-transformed depen-
dent variables.
Bivariate analyses were first conducted to examine
the relationships between independent variables (care-
giver factors, patient factors, caregivers’ evaluation of
patient functioning) and outcome variables (caregiver
burden and depression). For those independent vari-
ables that were categorical, t-tests and ANOVAs were
used. For those independent variables that were con-
tinuous, linear regression models were used. The in-
dependent variables that had a significant relationship
with the outcome variables were then selected as candi-
dates for the multiple regression models, which were fit
separately for caregiver depression and burden. Step-
wise variable selection methods were used to determine
the subset of variables that were most predictive of the
outcomes.
 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden 447

Table 1
Caregiver burden and depression means for categorical independent variables
Caregiver burden Caregiver depression
N Mean 95% CI N Mean 95% CI
Gender
Male 12 1.121 −0.486, 0.006 11 0.619 −0.443, 0.066
Female 37 1.361 37 0.807
Marital status
Single 14 1.29 1.03, 1.56 15 0.71 0.50, 0.93
Married 16 1.27 1.09, 1.45 16 0.79 0.58, 1.00
Separated 2 1.39 0.27, 2.51 2 0.75 −1.16, 2.67
Widowed 3 1.05 −0.58, 2.69 3 0.57 −0.00, 1.14
Cohabitating 14 1.39 1.21, 1.57 12 0.84 0.59, 1.10
Relationship to patient
Spouse 14 1.18 0.94, 1.42 12 0.64 0.39, 0.90
Parent 12 1.41 1.24, 1.59 12 0.84 0.64, 1.04
Sibling 12 1.45 1.28, 1.62 12 0.88 0.65, 1.12
Child 4 1.20 0.55, 1.84 5 0.66 0.26, 1.06
Other 7 1.16 0.66, 1.67 7 0.71 0.29, 1.13

3. Results (F4,44 = 1.46, p = 0.23) or depression (F4,43 = 0.85,

3.1. Description of caregiver burden and depression
The mean total score of caregiver burden on the Zarit
Burden Interview was 26.02 (SD = 19.15), with 49%
of caregivers reporting little or no burden, 31% mild to
moderate burden, 10% moderate to severe burden, and
10% severe burden. The mean total score of caregiver
depression on the PHQ-9 was 7.50 (SD = 6.12), with
41% of caregivers reporting experiencing no symp-
toms of depression, 25% mild symptoms, 18% moder-
ate symptoms, 10% moderate to severe symptoms, and
6% severe symptoms. These categorical classifications
are provided for better understanding of the levels of
burden and depression experienced by the caregivers
in this study; however, for the purposes of statistical
analyses, the mean total scores of these two variables
were used and treated as continuous.
3.2. Bivariate analyses
The log transformed means of caregiver burden and
depression for the gender, marital status, and care-
giver relationship to patient groups are summarized
in Table 1. T -tests indicated that caregiver gender
had no significant relationship with caregiver burden
(t47 = −1.96, p = 0.056) or caregiver depression
(t46 = −1.49, p = 0.14). ANOVA indicated that care-
giver marital status did not have a significant relation-
ship with caregiver burden (F4,44 = 0.534, p = 0.71)
or depression (F4,43 = 0.43, p = 0.79). ANOVA al-
so indicated that caregiver relationship to patient did
not have a significant relationship to caregiver burden
p = 0.50). Results of the linear regressions are pro-
vided in Table 2 (for caregiver burden) and Table 3
(for caregiver depression). Only patient problems in the
language domain and the caregiver perception of all
six domains of patient functioning were significantly
related to caregiver burden. Only caregiver socioeco-
nomic status and the caregiver perception of all six do-
mains of patient functioning were significantly related
to caregiver depression.
3.3. Multiple regression
Multiple linear regression was used to determine
which set of independent variables were most strongly
associated with caregiver burden and depression. Mod-
els were fit separately for each outcome using SPSS’s
stepwise model selection method. For caregiver bur-
den, the seven significant variables from bivariate anal-
yses (patient language problems and caregiver percep-
tion of all six patient neurobehavioral functioning do-
mains) were initially included as candidates for the
multiple linear regression as explanatory variables. In
the final model, only caregivers’ perception of patient
depression significantly contributed to the variability in
caregiver burden, accounting for approximately 31.6%
of variation.
For caregiver depression, the seven significant vari-
ables from bivariate analyses that were initially in-
cluded as candidates for the model included caregiver
socioeconomic status and caregiver perception of all
six patient neurobehavioral functioning domains. In
the final model, only caregivers’ perception of patient
depression significantly contributed to the variability
448 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden

Table 2
Summary of linear regressions between each continuous independent variable and caregiver burden (N = 49)
R β β Std Err t† p
Caregiver factors
Age 0.08 0.002 0.003 0.548 0.586
Education 0.219 −0.018 0.012 −1.538 0.131
Socioeconomic status 0.157 −0.05 0.046 −1.09 0.281
Patient factors
Time since injury 0.215 −0.002 0.001 −1.51 0.138
Depression 0.020 0.002 0.011 0.137 0.891
NEUROPSI attention and concentration 0.106 −0.008 0.011 −0.732 0.468
NEUROPSI long term memory 0.020 −0.001 0.008 −0.140 0.889
NEUROPSI executive functioning 0.225 −0.037 0.023 −1.584 0.120
NEUROPSI language 0.299 −0.015 0.007 −2.15 0.037
NEUROPSI short term memory 0.210 −0.031 0.021 −1.47 0.148
NEUROPSI motor 0.075 0.014 0.027 0.516 0.608
NEUROPSI orientation 0.166 −0.112 0.097 −1.153 0.255
NEUROPSI total score 0.173 −0.004 0.003 −1.20 0.236
Caregivers’ ratings of patient functioning
Caregiver NFI depression 0.562 0.018 0.004 4.66 < 0.001
Caregiver NFI somatic problems 0.305 0.014 0.006 2.196 0.033
Caregiver NFI memory and attention 0.488 0.013 0.003 3.831 < 0.001
Caregiver NFI communication problems 0.402 0.019 0.006 3.012 0.004
Caregiver NFI aggression problems 0.422 0.019 0.006 3.193 0.003
Caregiver NFI motor problems 0.393 0.023 0.008 2.929 0.005
† Degrees of freedom = 48 for all tests. Only exception is that for patient depression, degrees of freedom = 47.

Table 3
Summary of linear regressions between each continuous independent variable and caregiver depression (N = 48)
R β β Std Err t† p
Caregiver factors
Age 0.117 0.003 0.004 0.801 0.427
Education 0.195 −0.016 0.012 −1.346 0.185
Socioeconomic status 0.287 −0.089 0.044 −2.031 0.048
Patient factors
Time since injury 0.242 −0.002 0.001 −1.692 0.097
Depression 0.174 0.013 0.011 1.185 0.242
NEUROPSI attention and concentration 0.089 0.007 0.011 0.607 0.547
NEUROPSI long term memory 0.087 0.005 0.008 0.595 0.555
NEUROPSI executive functioning 0.226 −0.036 0.023 −1.576 0.122
NEUROPSI language 0.274 −0.014 0.007 −1.935 0.059
NEUROPSI short term memory 0.059 −0.009 0.021 −0.401 0.690
NEUROPSI motor 0.154 0.028 0.027 1.055 0.297
NEUROPSI orientation 0.058 −0.038 0.097 −0.393 0.696
NEUROPSI total score 0.016 0.000 0.003 −0.111 0.912
Caregivers’ ratings of patient functioning
Caregiver NFI depression 0.643 0.020 0.004 5.691 < 0.001
Caregiver NFI somatic problems 0.427 0.019 0.006 3.207 0.002
Caregiver NFI memory and attention 0.574 0.015 0.003 4.757 < 0.001
Caregiver NFI communication problems 0.491 0.023 0.006 3.818 < 0.001
Caregiver NFI aggression problems 0.439 0.020 0.006 3.318 0.002
Caregiver NFI motor problems 0.582 0.034 0.007 4.853 < 0.001
† Degrees of freedom = 47 for all tests. Only exception is that for patient depression, degrees of freedom = 46.

in caregiver depression, accounting for approximately 4. Discussion

40% of variation. As both of the final models each only
included one variable, information regarding the slope, The purpose of the present study was to examine
standard error, and p-value can be found in Tables 2 factors related to burden and depression in a group of
and 3. caregivers of individuals with TBI. Results showed that
 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden
caregivers’ perception of patient depression as mea-
sured by the NFI was the only factor associated with
caregiver burden and depression.
This finding contrasts with previous studies that have
found caregiver burden to be related to a number of
factors other than caregiver’s perception of patient de-
pression. In a series of studies conducted by Marsh and
colleagues [12,13,19], caregiver burden was generally
related to caregiver reports of patient behavioral prob-
lems, physical changes, and social contact. In addi-
tion, injury severity, patient neuropsychological func-
tioning, increased patient dependency, and caregiver
reports of patient problematic behaviors have been as-
sociated with increased caregiver burden [31].
Regarding caregiver depression, the results of this
study also differ from findings previously reported in
the literature. For example, in their study, Kreutzer
and colleagues [18] found caregivers’ perceptions of
patient neurobehavioral problems to be associated with
caregivers’ self-report of depression; however, care-
giver perception of patient emotional functioning was
not assessed. In addition, Kreutzer and colleagues [18]
found that verbal learning and relationship to patient
were additional factors that predicted depression out-
side of neurobehavioral functioning. Similarly, another
study found other factors to be more related to caregiver
depression, such as adverse effects TBI had on the fam-
ily [32], and other studies have found no relationship
between caregiver estimation of patient characteristics
and caregiver depression [12,13,19].
There are a number of possible explanations for these
contrasting results, the first of which concerns the mea-
sures used in this study. The present study used the
NFI to measure caregivers’ perceptions of patients, a
questionnaire that allows both the patient and the fami-
ly to rate the patient in six domains: depression, somat-
ic symptoms, memory/attention, communication, ag-
gression, and motor functioning. While other studies
have included measures of caregiver perception of pa-
tient functioning in multiple domains (physical, cogni-
tive, emotional, behavioral, and social), none measured
caregiver perceptions of patient depression specifical-
ly. Further, one study utilized semi-structured inter-
views [32] to measure caregiver perceptions of patient
neurobehavioral functioning.
Another possible explanation for the difference in
findings related to measures concerns how neuropsy-
chological functioning was assessed. Studies that have
found that objective measures of neuropsychological
functioning predict caregiver depression and burden
used measures that targeted specific areas of cogni-
449
tive performance. For example, Kreutzer and col-
leagues [18] found that patients’ verbal learning abil-
ity, as measured by the Rey Auditory Verbal Learn-
ing Test (RAVLT), was related to caregiver depression.
Machamer and colleagues [31] found poorer perfor-
mances on Trail Making Test Parts A and B, the Per-
formance Intelligence Quotient (PIQ) of the Wechsler
Adult Intelligence Scale (WAIS), and the Selective Re-
minding Test to be associated with higher caregiver
burden at 1 month post-injury. However, at 6 months
post injury, only Trails A and the PIQ were significantly
associated with higher caregiver burden. In the present
study, one comprehensive neuropsychological measure
comprised of several domains was administered. It is
possible that each domain of the NEUROPSI was not as
sensitive to the different areas of cognitive functioning
as were the specific tests utilized in the other studies.
For example, the verbal learning and memory compo-
nent of the NEUROPSI is not as extensive as is the
RAVLT; the NEUROPSI assesses learning and memory
of a list of six words, whereas the RAVLT has 15 words.
Also, the Attention and Concentration subscale of the
NEUROPSI includes measures such as digit span back-
wards, visual scanning, and serial subtraction. These
abilities may be more related to working memory, in
contrast to the Trail Making Test Parts A and B, which
assess immediate and sustained attention, mental flex-
ibility, and has a motor component. Additionally, the
NEUROPSI does not have an equivalent to the WAIS
PIQ.
Cultural factors may also account for differences be-
tween current findings and those from previous studies.
Previous studies that examined caregiver burden and
depression have utilized primarily Anglo-Saxon pop-
ulations, while the present study was conducted with
subjects living in Colombia. Hispanic perceptions of
the role and responsibilities of family can differ great-
ly from those in the Anglo-Saxon community [33,45].
Familism, or placing a strong emphasis on the impor-
tance of family needs over individual needs [45], is im-
portant in Hispanic culture. Hispanic caregivers tend
to endorse more traditional beliefs regarding the role
of the caregiver, often resulting in higher distress [46].
In addition, in Hispanic cultures, there is higher stigma
associated with mental health problems, which may re-
sult in caregivers being more aware of, and sensitive
to, patient emotional problems instead of patient phys-
ical or cognitive problems, which may in turn exacer-
bate burden and depression [47] for caregivers when
emotional issues are present in patients. It is possi-
ble that in this South American population, the higher
450 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden
stigma associated with mental health perceptions ex-
plained why only caregiver perception of patient de-
pression was significantly related to caregiver burden
and depression. Future research is needed to further
explore this possibility.
These preliminary findings indicate that caregivers’
perception of patient depression was the only factor as-
sociated with increased caregiver burden and depres-
sion. One possible suggestion to help reduce caregiver
burden and depression includes interventions aimed at
targeting caregivers’ perception of patient depression.
If the caregivers’ perception of patient depression is
inaccurate, treatment can focus on this misperception.
If the caregivers’ perception of patient depression is
indeed accurate, treatment can focus on improved care-
giver coping despite their patients’ depression. Tar-
geting one particular thought process (i.e., perception
of patient depression) may be easier, faster, and more
effective than attempting to address depression as a
whole, especially in healthcare settings where time is
limited and resources are scarce.
Cognitive Behavioral Therapy (CBT) techniques
may be most useful. CBT operates under the premise
that individuals are able to change their emotions
and behaviors by specifically targeting dysfunctional
thoughts [48]. For example, if a caregiver thinks ‘My
son is so depressed; he will never be the same man
he was’, the caregiver may feel depressed. By target-
ing this thought and working to identify more adaptive
thoughts that may also be true (e.g. ‘My son was able
to participate in family dinner tonight’, or ‘My son’s
mood may improve’), caregiver mood may improve.
CBT and its iterations (e.g. Acceptance and Commit-
ment Therapy [49]) allow caregivers to accept their
difficult reality, but reframe negative thoughts to more
adaptive ones that reduce negative mood.
There is also growing recognition of the importance
of including families in the treatment process follow-
ing brain injury [50–55]. For example, family systems
theory asserts that the feelings, thoughts, and behaviors
of one individual affect the entire family [50]. Under
this theory, the caregiver’s perception of depression in
the patient affects the entire family and has possible
negative consequences for the care the patient receives.
Within this framework, providers can work with the
caregiver, survivor, and other family members together,
discussing how the family has been affected by changes
after the injury, openly addressing differences in per-
ceptions of change, and discussing how family mem-
bers can support one another during this difficult adjust-
ment. Using family systems theory to include the fam-
ily in the treatment process would likely improve not
only the well-being of the caregiver and other family
members, but also the care that the survivor receives.
There are several limitations that should be taken in-
to account when interpreting the results of this study.
First, several factors related to our sample limit the
generalizability of findings. The caregivers and indi-
viduals with TBI included in this study were from two
urban areas of Colombia and results may not general-
ize to those in more rural Latin American areas. Also,
the caregivers and patients volunteered to participate
in this study, resulting in a non-random sample. Ad-
ditionally, the caregivers included in this study were
providing care to patients who had received little or no
rehabilitation services, which may limit comparisons
of our findings with those from studies conducted with
individuals who have access to more comprehensive re-
habilitation services. It is possible that the experience
of a caregiver for an individual with TBI in a country
where rehabilitation resources are scarce is very differ-
ent from that of a caregiver for an individual who does
have access to more rehabilitation services; levels of
burden and depression may vary as a function of the
expectation for recovery based on available resources.
Lastly, the majority of caregivers cared for individuals
with moderate-to-severe TBI; findings may not apply
to caregivers of individuals with mild injury, who might
have fewer neurobehavioral problems. Second, there
are a host of other variables that could be related to
caregiver burden and depression that were not included
in this study.
A third limitation of this study involves the instru-
ments chosen. Specifically, this study utilized the NFI to
measure neurobehavioral functioning. This scale does
not assess for all the types of neurobehavioral prob-
lems that could have an effect on caregivers’ level of
burden and depression (e.g., substance abuse, person-
ality changes, sexual problems, etc.). Similarly, care-
giver burden was measured with the Zarit Burden In-
terview. Caregiving for an individual with TBI is very
complex, and this instrument does not assess all the
aspects that may influence caregivers’ burden. Mea-
sures of burden used in other studies included aspects
such as positive experiences, family impact, and time
burden. Conversely, measures of burden used in other
studies did not include aspects covered by the Zarit,
such as financial impact and impact on the relation-
ship between caregiver and patient. Additionally, these
measures rely on self-report. Future studies should take
this into consideration and include objective informa-
tion and observations independent from the caregivers,
such as physiological measures or clinician ratings.
 L.F. Stevens et al. / Spanish-speaking caregiver depression and burden
In conclusion, the purpose of the present study was
to examine factors related to burden and depression in
a group of caregivers of individuals with TBI. Prelim-
inary findings for a group of caregivers of individuals
with TBI in Colombia indicated that caregivers’ per-
ception of patient depression was the single best pre-
dictor of caregiver burden and depression. Implications
for treatment include targeting caregiver perceptions of
patient depression in order to reduce caregiver burden
and depression. Future research is necessary to corrob-
orate and expand these findings and explore the efficacy
of the treatment recommendations presented.
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