971511

research-article2020
JAGXXX10.1177/0733464820971511Journal of Applied GerontologySheth et al.

COVID-19 Article
Journal of Applied Gerontology

Effects of COVID-19 on Informal 2021, Vol. 40(3) 235­–243

© The Author(s) 2020
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DOI: 10.1177/0733464820971511

Validation of a Scale in English and journals.sagepub.com/home/jag

Spanish to Measure the Impact of

COVID-19 on Caregivers

Khushboo Sheth1,2 , Kate Lorig2, Anita Stewart3,

José F. Parodi4 , and Philip L. Ritter2

Abstract
To understand how the COVID-19 pandemic has affected caregivers, we assessed its perceived impact on caregiving through
a new measure: the Caregiver COVID-19 Limitations Scale (CCLS-9), in Spanish and English. We also compared levels of
caregiver self-efficacy and burden pre-COVID-19 and early in the pandemic. We administered surveys via internet to a
convenience sample of caregivers in January 2020 (pre-pandemic, n = 221) and in April–June 2020 (English, n = 177 and
Spanish samples, n = 144) to assess caregiver self-efficacy, depression, pain, and stress. We used the early pandemic surveys
to explore the validity of the CCLS-9. The pre-COVID-19 survey and the April English surveys were compared to determine
how the COVID-19 pandemic affected caregivers. The CCLS-9 had strong construct and divergent validity in both languages.
Compared to pre-COVID-19, caregiver stress (p = .002) and pain (p = .009) were significantly greater early in COVID-19,
providing evidence of its validity. COVID-19 added to caregiver stress and pain.

Keywords
caregiving, stress, self-efficacy, burden, COVID-19

Approximately 43.5 million people in the United States are
caregivers to a family member with a disability or illness
(Family Caregiver Alliance, 2020). These people are termed
informal caregivers as they are seldom trained for this role
nor did they necessarily desire it. These “informal” caregiv-
ers provide indispensable health services to their family
members and are considered by many policy makers to be
front-line health service providers (American Psychological
Association, 2020). The economic value of services provided
by informal caregivers was estimated to be 470 billion dol-
lars in 2013 (Family Caregiver Alliance, 2020).
In the best of times, caregivers have high levels of stress
and depression. Caregiving can affect a caregiver’s emotional
well-being, finances, and routine social activities as caregivers
often feel unprepared for their role due to a host of personal
factors and lack of skills (R. Brown & Brown, 2014; Reinhard
et al., 2012). These effects are reflected in perceived caregiver
burden and stress due to caregiving, as well as depression, and
health problems (Loh et al., 2017; Schulz & Martire, 2004).
Little is known about how stress, depression, caregivers’
well-being, finances, and routine social activities are changed
during a pandemic such as COVID-19 (Coronavirus disease,
disease caused by novel Sars-CoV-2 virus). Already stressed,
caregivers are trying to navigate these difficult times along
with caring for friends or family. There is limited data on the
impact or added burden of a pandemic or other natural or man-
made calamity on caregivers. What is available is from the
HIV pandemic. A study by Kohli et al. (2012) focused on
exploring the perceptions and norms regarding care being pro-
vided by family caregivers for persons living with HIV. Most
of the other studies were focused on caregiving for children
Manuscript received: July 13, 2020; final revision received: October
9, 2020; accepted: October 12, 2020.
1
VA Palo Alto Healthcare System, CA, USA
2
Stanford University, CA, USA
3
University of California, San Francisco, USA
4
Universidad de San Martín de Porres, Lima, Perú
Corresponding Author:
Khushboo Sheth, Division of Immunology and Rheumatology, Department
of Medicine, Stanford University School of Medicine, Stanford, CA, 94305,
USA; VA Palo Alto Health Care System, Palo Alto, CA, 94304, USA.
Email: ksheth@stanford.edu
236 Journal of Applied Gerontology 40(3)

Table 1.  Study Design for Two Studies Using Three Samples.

Published study: Prior to

COVID-19 pandemic (Jan 2020) Early in COVID-19 pandemic (Apr 2020)

Survey content Sample 1 U.S. English Sample 2 U.S. English Sample 3 Latin America, Spanish
CCLS-9 — A A
COVID-19 experiences — A A
CSES-8 B A/B A
Caregiver burden measures B A/B A

Note. A: Data relevant to Study A: Test CCLS-9 in Samples 2 and 3. B: Data relevant to Study B: Compare caregiver self-efficacy and burden pre-COVID
(Sample 1) to early COVID-19 (Sample 2) (both U.S. English samples). COVID = coronavirus disease; CCLS-9 = Caregiver COVID-19 Limitations
Scale-9; CSES-8 = Caregiver Self-Efficacy Scale-8.

with HIV or the effects of caregiver and household HIV on
child development (Osafo et al., 2017; Sherr et al., 2016).
Several articles have elaborated on the roles and challenges
for informal caregivers during the COVID-19 pandemic; how-
ever, literature on the experience of informal caregivers and
how their self-efficacy is affected during COVID-19 pandemic
is lacking. In their article, E. E. Brown et al. (2020) examined
the current and expected impact of the COVID-19 pandemic
on individuals with Alzheimer’s disease and related dementias
(ADRD). They discussed possible effects of COVID-19 on
caregivers of individuals with ADRD including difficulties
with social distancing, caregiving associated exhaustion, and
other factors. Kent et al. (2020) elaborated on the vital role
family caregivers play during pandemics as professional health
care work force is busy treating COVID-19 patients. They
describe three main challenges facing caregivers during the
pandemic—emotional stress, economic stress, and decreased
routine health care options—and provide insights on how to
best support family caregivers during COVID-19.
We could not find studies that specifically focus on care-
giver self-efficacy or other factors that enhances or mitigated
and the leading factors that add to caregiver strains during a
pandemic or other unexpected man-made or natural upheavals
on a similar scale. Caregiving self-efficacy relates to caregiv-
ers’ confidence in accomplishing caregiving tasks and coping
with the difficulties of caregiving (Au et al., 2009; Lorig et al.,
2019; Zeiss et al., 1999). Self-efficacy is one of the major
components of the social cognitive theory. Many interventions
designed to manage stress and improve behavioral skills are
based on self-efficacy (Bandura, 1997). Steffen et al. (2002)
have showed that self-efficacy is inversely related to caregiver
stress. Several studies have been successful in improving self-
efficacy by different interventions (e.g., yoga, occupational
therapy) thus implying that caregiver self-efficacy may be a
mediator to help caregivers achieve positive outcomes (Gitlin
et al., 2001; Lorig et al., 2019; Waelde et al., 2004).
As a natural disaster the magnitude of COVID-19 is unparal-
leled, we have taken its advent as an opportunity to study the
effects of this specific disaster on caregiving. We hypothesized
that caregivers would have higher stress and lower self-efficacy
during the COVID-19 pandemic. We created a new Caregiver
COVID-19 Limitations Scale (CCLS-9) which might be useful
in future man-made or natural disasters. This scale was tested in
samples of English speakers throughout the United States and
Spanish speakers from Latin America, mainly Peru.
Method
Study Design and Research Questions
To examine the impact of the COVID-19 pandemic on care-
givers, we report on two broad research questions based on
two studies. The overall design is shown in Table 1. First, to
assess directly how the pandemic affected caregivers, we
developed a new measure: the CCLS-9. We administered the
CCLS-9 early in the pandemic (April 2020–June 2020) to
two samples of caregivers, one in English in the United
States (Sample 2) and one in Spanish (primarily in Latin
America, Sample 3) (Supplementary File). We report the
psychometric properties of the CCLS-9 and explore its con-
struct validity in relation to measures of caregiver self-effi-
cacy and caregiver burden (referred to as Study A in Table 1).
Second, because we had administered the same measures of
caregiver self-efficacy and caregiver burden in a prior survey
conducted just before the COVID-19 pandemic, we com-
pared levels in the early COVID-19 English-speaking sam-
ple (Sample 2) to our pre-COVID-19 sample of caregivers
(Sample 1) (Supplementary File). This is referred to as Study
B in Table 1. We wished to determine if burden was higher in
the new English-language sample than in the pre-COVID-19
sample. Thus, the research design consisted of two studies (A
and B) utilizing three samples (1, 2, and 3).
The research was approved by our institution’s Institutional
Review Board. No incentives were provided to the participants.
The Samples and Recruitment
Sample 1.  The pre-COVID-19 survey (Sample 1) was origi-
nally administered in January 2020 as part of a potential
study of the effect of arthritis upon caregivers. Recruitment
was via the internet, using a REDCap survey link on social
media, mainly Listservs and blogs to convenience samples of
informal caregivers of adults. Those receiving the links were
urged to send them to other populations. Information
Sheth et al. 237
regarding the trial, including description, risks and benefits,
time involvement, participant’s rights, authorization, and
contact information, were described in detail on the first
page of the Redcap survey. Consent was obtained by asking
the following two questions on the survey: I have read and
understand the information provided “above” and “I agree to
participate in this study.” If a participant selected “No” to
either question, they were not able to complete the survey.
Sample 2. Both English- and Spanish-speaking early-
COVID-19 samples were recruited similarly to the pre-
COVID-19 sample. Questions were added to January 2020
survey and the English-language survey was administered to
caregivers in the United States in April 2020.
Sample 3.  Parodi J, one of the authors of this article, a geria-
trician in Peru, was also interested in understanding the effects
of COVID-19 on caregiving. He translated the survey into
Spanish. This included all items in English-language Sample
2 (variables described below). It was then back translated into
English by another professional colleague whose first lan-
guage was also Spanish. The Spanish survey was then admin-
istered in May and June 2020 using Listservs and social
media to caregivers in South America by Parodi J, although
some surveys reached and were completed by Spanish-speak-
ing caregivers in Mexico, Spain, and the United States.
Measures
We assessed caregiver stress using a visual numeric scale (on
a 1–10 scale) and pain using a visual numeric scale (Ritter
et al., 2006). Depression was measured with the eight-item
Patient Health Questionnaire (PHQ-8, a modified version of
the PHQ-9, Kroenke & Spitzer, 2002). Overall health was
ascertained with a single-item measure from the health assess-
ment questionnaire (ranging from poor to excellent; Ramey
et al., 1992). We administered the eight-item Caregiver Self-
Efficacy Scale (CSES-8) that measures obtaining respite,
controlling negative thoughts, coping with new situations,
stress management, self-care, finding resources, and prevent-
ing disruptions (Ritter et al., in press) Basic demographic
included age and gender of caregiver and care recipient, rela-
tionship between caregiver and care recipient, number of
hours of caregiving, and ethnic identification of caregiver.
Ages and hours of caregiving used categories rather than
require volunteer respondents to fill in exact numbers.
For the early COVID-19 surveys (Samples 2 and 3), we
added questions about COVID-19 testing, symptoms, and
hospitalization. We also developed and added a nine-item
CCLS-9 which is described below.
Study A: Development and Validation of the
CCLS-9, English and Spanish
Development of the CCLS-9.  We developed items with input
from all authors based on emerging information on how
COVID-19 was affecting the general population and extrap-
olating this to how it might affect caregivers. The sources of
information included the national press, our local clinical
experience with senior living environments, and literature
review. We identified specific areas of caregiving most
likely to be adversely impacted by the pandemic, building on
published measures of caregiver burden. The content of the
initial 10 items included questions that focused on particular
aspects of COVID-19 including the anxiety of contracting
the disease, need for social isolation, contagion uncertainty
(how it is transmitted), enhanced hygiene, limitations on
going out and having visitors (including respite), limitations
in access to health care, and the effect on the economy.
As context, we assessed caregivers’ experiences with
COVID-19 by asking whether the caregiver or their care
recipient had experienced any of a list of COVID-19 symp-
toms in the past month, and if so, whether they talked to a
doctor about their symptoms, were tested, and needed
hospitalization.
Analyses.  We evaluated the basic psychometric properties of
the CCLS-9 separately for the English-language and Span-
ish-language samples. This included examining item means,
item-scale correlations corrected for overlap, and internal
consistency reliability via Cronbach alpha. Principal compo-
nents analysis was applied to determine if the scale consisted
of multiple components or subscales. Once items were found
to meet criteria of psychometric adequacy, we created an
overall CCLS-9 score by averaging non-missing items.
Scores ranged from 1 to 10, and a higher score indicates
more limitations. If more than two items were missing, the
entire scale was set to missing.
We used Pearson correlation coefficients to examine the
associations between CCLS-9 with the caregiver burden
measures (depression, stress, pain, overall health) and with
caregiver self-efficacy (CSES-8). We hypothesized that self-
efficacy, depression, and stress would be more strongly asso-
ciated with the CCLS-9 than pain and overall health.
Study B: Comparison of Caregiver Stress/Burden
Pre-COVID-19 to Early COVID-19, English
Samples
Study B utilized data from our pre-COVID-19 survey (Sample
1 in Table 1) to compare with the English-language early
COVID-19 sample (Sample 2 in Table 1). Because the same
measures were administered in the newer sample, we were
able to compare scores between the sample recruited pre-
COVID-19 (Sample 1) and the new English-language sample
recruited in April 2020 (Sample 2). We first compared the
demographic characteristics of the two samples. Because these
independent samples were collected using identical methodol-
ogy, we hypothesized that there would not be significant dif-
ferences in age, gender, education, or ethnicity. Continuous
demographic variables had been collected using categories
(e.g., age 50–59). We tested these variables in two ways: using
238 Journal of Applied Gerontology 40(3)

Table 2.  Demographic Characteristics of Participants in the Pre-COVID-19, English Early-COVID-19, and Spanish Early-COVID-19
Samples.

Sample 1: Pre- Sample 2: English early Sample 3: Spanish early

COVID-19 survey COVID-19 survey COVID-19 survey
Variable Category (N = 221) (%) (N = 177) (%) (N = 144) (%)
Gender (% Female) 88.9 86.8 83.0
Age 18–49 16.1 17.8 34.8
50–59 24.8 25.3 29.1
60–69 36.2 38.5 25.5
70–79 16.5 14.9 9.2
>80 6.4 3.5 1.4
Ethnic category Black 18.2 17.9 1.4
White 74.2 75.1 24.3
Two or more races 5.3 1.7 —
Mestizo — — 62.9
Andino — — 11.4
Other (Asian, Pacific, 2.4 2.3 0.0
American Indian)
Hispanic/Latino 7.7 5.2 99.3
Education (highest Primary 0.5 0.6 0.7
level completed) High school 9.7 13.3 20.0
College 46.3 41.0 45.7
Graduate school 43.5 45.1 33.6
Relationship to care Spouse 22.1 31.8 7.1
recipient Parent 5.1 7.5 1.4
Child 51.2 46.8 61.7
Sibling 6.5 2.9 3.6
Other 15.2 11.0 26.2
Hours spent 0–9 20.0 12.8 26.2
caregiving per 10–19 28.4 21.1 15.4
week 20–29 14.0 18.9 12.8
30–39 18.8 5.6 6.0
>40 28.8 41.7 39.6
Care partner gender 58.2 52.6 72.1
(% Female)
Care partner age 18–49 5.1 8.7 1.4
50–59 6.1 3.5 2.1
60–69 10.3 14.5 2.9
70–79 24.8 22.7 25.7
>80 53.7 50.0 67.9

Note. COVID = coronavirus disease.

the mean of the ranked categories (e.g., coded 0–6 for the
seven age categories) and dichotomizing into roughly equal
groups (e.g., aged 60 and above vs. less than 60).
The primary research question was to compare scores on
the measures of caregiver burden (depression, stress, pain,
overall health) and CSES-8 using independent sample t-tests,
as appropriate. If we found significant differences between
the two samples in any demographic variable, we would then
use analysis of covariance models to test if there were sig-
nificant differences in burden or self-efficacy after control-
ling for differing demographic variables. Otherwise, we used
independent sample t-tests. We hypothesized that we would
see higher levels of burden and lower self-efficacy in the
early COVID-19 sample than in the pre-COVID-19 sample.
Results
Description of Three Samples
Because our two research questions involve presenting infor-
mation from three samples, we describe all three samples:
the pre-COVID-19 study of caregivers (Sample 1), and our
two newer early-COVID-19 samples (Sample 2 English,
Sample 3 Spanish). The demographics and caregiving char-
acteristics of participants in all three samples are summa-
rized in Table 2.
The pre-COVID-19 sample had a total of 228 responses, the
early-COVID-19 English survey had 221 responses, and the
early-COVID-19 Spanish survey had 175 responses. Of these,
the number of complete surveys were 221 (pre-COVID-19),
Sheth et al. 239

Table 3.  Item Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9).

English Version of the CCLS-9

Instructions for all items are to rate difficulties, limitations, and changes at the present time on a 1–10 scale.
1.  How worried/anxious are you that you will get COVID-19?
2.  How worried/anxious are you that your care partner will get COVID-19?
3.  How much has coronavirus affected your household source of income?
4.  How much has limitations on going out changed your ability to care for your care partner?
5.  How much has limitations on getting respite changed your ability to care for your care partner?
6.  How much has limitations on outside visitors/friends/family changed your ability to care for your care partner?
7.  How difficult has it been for you to explain COVID-19 related limitations to your care partner?
8.  Have you noticed changes in your care partner’s behaviors because of limitations imposed by COVID-19?
9.  How much has limited ability to access health care due to COVID-19 changed your ability to care for your care partner?

Spanish Version of the CCLS-9

Las instrucciones para todos los ítems son calificar las dificultades, limitaciones y cambios en el momento actual en una escala de 1 = 10.
1.  ¿Qué tan preocupado / ansioso está usted por contagiarse de COVID 19?
2.  ¿Qué tan preocupado / ansioso está usted de que la persona que cuida se contagie de COVID 19?
3.  ¿Cuánto ha impactado el coronavirus a la fuente de ingresos de su hogar?
4.  ¿En qué medida las limitaciones para salir cambiaron su capacidad de cuidar a la persona que cuida?
5. ¿En qué medida han cambiado las limitaciones para obtener un respiro (descanso) en su capacidad de cuidar a su compañero de
cuidado?
6. ¿En que medida las limitaciones de los visitantes externos / amigos / familiares han cambiado su capacidad de cuidar a su compañero
de cuidado?
7.  ¿Qué tan difícil ha sido para usted explicar las limitaciones relacionadas con COVID 19 a la persona que cuida?
8.  ¿Ha notado cambios en el comportamiento de la la persona que usted cuida debido a las limitaciones impuestas por COVID 19?
9. ¿En qué medida la capacidad limitada para acceder a la atención médica debido a COVID 19 cambió su capacidad para cuidar a su
compañero de cuidado?

Note. CCLS = Caregiver COVID-19 Limitations Scale; COVID = coronavirus disease.

177 (early COVID-19 English), and 144 (early COVID-19
Spanish) each.
Study A: Development and Validation of the
CCLS-9
As seen in Table 2, the majority of the respondents in early-
COVID-19 English sample were White (75.1%), whereas in
the Spanish-language sample, the majority of the respondents
were of mixed race (62.9%) followed by either White or
Andino (Andes’ native) races. In the early COVID-19 English
cohort, 31.1% of the care recipients were spouses, whereas
only 7.1% of care recipients in the early COVID-19 Spanish
cohort were spouses. The amount of time spent caregiving
was similar in both samples (more than 40 hr weekly caregiv-
ing for both early COVID-19 English sample [41.7%] and
early COVID-19 Spanish sample [39.6%]). One caregiver
and one care partner had tested positive for COVID-19 in the
English sample, whereas one caregiver and five care partners
had tested positive for COVID-19 in the Spanish sample.
Dementia, high blood pressure, diabetes, heart disease, and
stroke were the most common primary or co-morbid condi-
tions among the care recipients in both the samples.
After initial psychometric examination in both languages,
we dropped one item that proved to be redundant, resulting
in nine items. The final nine items for the CCLS-9 are shown
in Table 3 in English and Spanish.
Principal components analysis resulted in two factors in
both languages. Items 1 and 2 loaded on one factor, and the
other seven items loaded on a second factor. This suggests
that the measure comprises two dimensions: worry/anxiety
about getting COVID-19 and limitations on their ability to
provide caregiving.
The overall mean score was 5.42 (SD = 1.97) for the
English-language caregivers (N = 175) and 5.06 (SD =
2.13, N = 140) for Spanish speakers. Mean scores for the
two samples were not significantly different (Table 4). In the
English-speaking sample, no participants had a minimum
value of 1 and two participants (1.1%) had the maximum
value of 10 on the CCLS-9. Among Spanish speakers, one
participant had the minimum value of 1 (0.7%) and no par-
ticipants had the maximum value of 10.
We had hypothesized that self-efficacy, stress, and depres-
sion would be associated with COVID-19 limitations. In
both the English-language and Spanish-language samples,
the CCLS-9 scale had moderate and statistically significant
correlations with caregiver self-efficacy, PHQ-8 depression,
and stress (all p < .001, Table 5). The CCLS-9 was only
weakly associated with pain and overall health in the English-
language sample (p = .045 and p = .087, respectively) but
240 Journal of Applied Gerontology 40(3)

Table 4.  Item Means, Internal-Consistency Reliability (Cronbach Alpha), Item-Scale Correlations Corrected for Overlap: Caregivers
COVID-19 Limitation Scale.

English-language survey (N = 168) Spanish-language survey (N = 138)

Alpha = .80 Alpha = .84

Item # Item mean (SD) Correlation with totala Item mean (SD) Correlation with totala
1 5.85 (2.64) 0.40 5.91 (3.11) 0.52
2 6.98 (2.87) 0.44 7.13 (2.99) 0.44
3 3.75 (3.32) 0.39 5.42 (3.27) 0.46
4 5.94 (3.28) 0.62 4.24 (3.26) 0.67
5 4.96 (3.69) 0.57 5.14 (3.16) 0.62
6 6.46 (3.16) 0.64 4.84 (3.62) 0.61
7 5.20 (3.45) 0.39 4.38 (3.36) 0.51
8 5.61 (3.26) 0.48 4.16 (3.05) 0.55
9 4.40 (3.33) 0.49 4.64 (3.36) 0.59

Note. The reliability analysis and alphas are calculated for only those who completed all nine items in the scale, thus the N’s are slightly lower than in
Tables 1 and 4, which include all those who completed most of the survey.
a
The total is the mean for the other nine items.

Table 5.  Pearson Correlations Between Caregiver COVID-19 Comparing Sample 1 (Pre-COVID-19) with Sample 2
Limitations Scale (CCLS-9) and Other Measures. (English early COVID-19), the mean scores of stress and pain
English sample Spanish sample were greater in the later sample (p = .002, p = .009, respec-
N = 177 N = 144 tively). PHQ-8 depression (p = .156), caregiver self-efficacy
Health measure r (p) r (p) (CSES-8) (p = .334), and overall health (p = .095) were not
significantly different (Table 6). Hours of caregiving were
Caregiver Self-Efficacy (CSES-8) −.45 (<.001) −.35 (<.001)
also significantly higher in the later sample than in the earlier
Depression (PHQ-8) .39 (<.001) .50 (<.001)
sample.
Stress (Visual Numeric) .40 (<.001) .41 (<.001)
Pain (Visual Numeric) .14 (.045) .29 (<.001)
Overall Health .13 (.087) .21 (.012) Discussion
In general, would you say your
health is (good to poor)? The COVID-19 pandemic has disrupted normal lives in mul-
tiple ways, which is expected of pandemics and several other
Note. CSES = Caregiver Self-Efficacy Scale; PHQ = Patient Health man-made and natural disasters (e.g., hurricanes, earth-
Questionnaire.
quakes, political unrest). Caregiving is known to be stressful
for caregivers. Little is known about the added burden of
had stronger and statistically significant associations in the such difficult times on this population; our study suggests
Spanish sample (p < .001 and p = .012, respectively). that pandemics such as COVID-19, at least in early stages,
Item-scale correlations ranged from .39 to .64 in the affects caregiving thus making it more challenging.
English-speaking sample and from .45 to .67 among the The CCLS-9 Scale had good internal consistency reli-
Spanish speakers. The internal consistency reliability (coef- ability in both English- and Spanish-speaking samples and
ficient alpha) was .80 and .84 for the English-language and was well distributed with no evidence of floor or ceiling
Spanish-language samples, respectively (Table 4). effects. Its moderate association with other limitation and
health measures suggests good discriminant validity,
Study B: Comparison of Caregiver Burden Pre- although this should be further tested. The overall mean
score in CCLS-9 (on a scale of 1–10) was 5.42 in English-
COVID-19 and Early in the COVID-19 Pandemic
language caregivers and 5.06 in Spanish-language caregiv-
Comparing the demographics of the two samples, there ers. This may imply that COVID-19 had an overall moderate
were no statistically significant differences in age, gender, impact on caregivers early in the pandemic. Further study
age of care recipient, gender of care recipient, or caregiver would be required to determine the level of burden associ-
education (Table 6). This was true for categorical variables ated with specific values of the CCLS-9. We are not aware
as well as for taking the mean of the ranked categories. Only of a similar measure which could be used to test for content
the dichotomized results are shown in Table 6. As hypothe- validity. International testing of this scale further supports
sized, the two samples were similar demographically. its use on a wider population. Implementing measures to
Sheth et al. 241
Table 6.  Comparison of Demographic and Caregiver Burden Variables for Pre-COVID-19 and Early-COVID-19 Samples.
Pre-COVID-19
Variable N = 221
Proportion age 60 or older (0, 1) .59
Gender (proportion female) .89
Proportion care recipient 70 or older .54
Care-recipient gender (proportion female) .64
Proportion education graduate school .44
Proportion White ethnicity (0–1) .74
Proportion care-recipient a parent (0–1) .51
Caregiver self-efficacy (CSES-8) 5.72
Depression (PHQ-8) 1.86
Stress 6.46
Pain 3.62
Overall health 2.75
Hours caregiving ≥20 hr .52
Note. ps are calculated using t-tests of independent samples. Categorical variables are dichotomized to roughly equal categories. CSES = Caregiver Self-
Efficacy Scale; PHQ = Patient Health Questionnaire.
improve the health and self-efficacy of caregivers during
such difficult times can be a key element, as a primary agent,
for the prevention and management and functional rehabili-
tation of older people with chronic conditions (de Carvalho
et al., 2019).
Although its wording is specific to the COVID-19 pan-
demic, it could be adapted to other diseases or disasters that
might limit the ability of family or other caregivers. Certain
questions on the COVID-19 scale are more specific for
COVID-19 and similar pandemics (anxiety about caregiver
or care-partner contracting the disease and limitations on
going outside or limitations on visitors—questions 1, 2, 4,
and 6 in Table 2). However, other validated questions on the
questionnaire can have wider implementation for caregivers
during other large-scale disruptions/disasters (a particular
pandemic/disaster affecting household income, limitations
on getting respite or explaining limitations to care-partner
due to ongoing pandemic/disaster, changes in care partner’s
behavior due to limitations imposed by an ongoing disaster,
and limitations imposed by difficulties accessing health care;
questions 3, 5, 7, 8, and 9 in Table 2).
COVID-19 has disproportionally affected the U.S.
Hispanic and African American communities. In our study,
we did not find a significant difference in terms of caregiver
outcomes between minority and non-Hispanic White com-
munities. The characteristics of families in Latin America
and the Caribbean (LAC) are somewhat different than those
in the United States. Older people with care dependency are
still mostly cared for at home by family members, sometimes
using a caregiver hired by themselves (National Institute of
Statistics and Informatics, 2019). Long-term care systems in
LAC are still under construction and health and social ser-
vices are fragmented, poorly coordinated, and in many cases
without universal coverage (Custodio et al., 2014). In these
Early-COVID-19 p of difference
N = 177 (df, t value)
.58 .743 (395, 0.33)
.87 .596 (393, 0,53)
.51 .610 (388, 0.51)
.57 .222 (386, 1.22)
.44 .952 (392. –0.06)
.75 .683 (389, –0.41)
.47 .467 (392, 0.73)
5.92 .334 (387, –0.97)
2.07 .156 (391, –1.42)
7.23 .002 (390, –3.07)
4.32 .009 (335, –2.64)
2.60 .095 (389, 1.68)
.66 .005 (388, –2.82)
countries, high out-of-pocket costs have been reported for
families for the care of elderly people with dementia
(Custodio et al., 2015). Likewise, a high level of stress and
little perception of self-efficacy of caregivers to carry out
their tasks during the pandemic have been reported
(Navarrete-Mejía et al., 2020). It is for this reason that it
seemed pertinent to investigate and compare Spanish-
speaking caregivers with English-speaking caregivers in the
context of the COVID-19 Pandemic.
In our comparison to the pre-COVID-19 study, we found
that COVID-19 did not seem, in the short term, to affect
some symptoms including depression and self-efficacy, nor
did it affect participant’s perception of their general overall
health. The lack of impact of COVID-19 on depression or
overall health could either be due to the fact that the disease
or threat of disease do not appear to affect these parameters
or that they were quite high to begin with and maybe had
already reached a near-ceiling effect. We plan to conduct a
follow-up survey for the participants who have left their
email addresses, and it would be interesting to study these
factors and changes in CCLS-9 after the newness of the pan-
demic wears off.
There were several limitations to this study. The major
one was the use of convenience samples. We had no way to
assess how many people who were eligible to respond chose
not to. Very few of the respondents reported COVID-19
symptoms or care recipients with COVID-19 symptoms, so
this is not a study of the direct effect of COVID-19 disease,
but rather of the effects of the social environment and restric-
tions associated with COVID-19. We could not determine
whether the caregivers were living with the care recipients
and if they were the sole caregivers of the care recipients.
Most of the responders were highly educated (as might be
expected of those who use Listservs) and we could not
242 Journal of Applied Gerontology 40(3)
determine if differences in education may affect outcomes.
More caregivers in Samples 2 and 3 (early COVID-19
cohorts) were spending more than 40 hr weekly on caregiv-
ing than Sample 1 (pre-COVID-19 cohort). This could
explain some differences in the outcome (particularly stress);
however, more hours spent caregiving could have been a
direct result of COVID-19, as help from outside may be lim-
ited. Further study would be required to confirm this.
Conclusion
To our knowledge, this is the first study to compare pre- and
early-pandemic caregiving samples and to test the validity of
a measure to assess the impact of a pandemic on caregivers.
A wider implementation of this measure is possible for other
pandemics and disasters.
Acknowledgments
We would like to acknowledge Julia Simard, ScD, for her help with
developing the CCLS-9 scale and Martha Pelaez, PhD, for her help
in back-translating the Spanish scale.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect
to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, author-
ship, and/or publication of this article.
IRB Approval
The study was approved by Stanford’s Institutional Review Board
(IRB study approval numbers 54099 and 56007).
ORCID iDs
Khushboo Sheth https://orcid.org/0000-0003-1681-3252
José F. Parodi https://orcid.org/0000-0002-0336-0584
Supplemental Material
Supplemental material for this article is available online.
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