Revista Científica y Arbitrada de Ciencias Sociales y Trabajo Social ‘‘Tejedora’’: Vol. 4 (Núm. 7) (ene-jun 2021). ISSN: 2697-3626  
Level of burden on the caregivers of people with severe disabilities  
LEVEL OF BURDEN ON THE CAREGIVERS OF PEOPLE WITH SEVERE DISABILITIES  
NIVEL DE CARGA EN LOS CUIDADORES DE PERSONAS CON DISCAPACIDAD SEVERA  
Rodríguez-Delgado Yenisel 1  
2
Reyes-Masa Betti del Cisne  
Carrión-Berrú Celsa Beatriz  
3
1
2
3
ABSTRACT:  
The present study was carried out for the purpose of determining the levels of load that the carers of persons with  
severe disabilities have, based on a design of bibliographical or documentary study, with the participation of the  
population under study, comprised of thirty carers of persons with severe disabilities. For which, the Questionnaire  
on the burden of the Zarit caregiver was applied to them, giving as results that 60% of the total of the surveyed  
sample present overload, where 36.67% experience an intense overload and 23.33% a slight overload. Therefore, it  
was determined that the overload in the caregiver is due to many significant factors, such as not having the support  
of other family members in the care of the person with severe disability, difficulty in reconciling care with household  
tasks, family and economic problems, thoughts about the future of their family member, circumstances that over  
time become stressful causing alterations in the emotional well-being of the caregiver.  
Keywords: Level of burden, Caregivers, Severely disabled person, Social Work.  
RESUMEN:  
El presente estudio se lo ejecutó con la finalidad de determinar los niveles de carga que tienen los cuidadores y  
cuidadoras de personas con discapacidad severa, basándose en un diseño de estudio bibliográfico o documental,  
contando con la participación de la población objeto de estudio conformada por treinta cuidadores y cuidadoras de  
personas con discapacidad severa. Para lo cual, se les aplicó el Cuestionario de carga del cuidador de Zarit, arrojando  
como resultados que el 60% del total de la muestra encuestada presentan sobrecarga, donde el 36,67% experimenta  
una sobrecarga intensa y el 23,33% sobrecarga leve. Por lo tanto, se determinó que la sobrecarga en el cuidador o  
cuidadora se debe a muchos factores significativos, como por ejemplo, no contar con el apoyo de otros familiares  
en el cuidado de la persona con discapacidad severa, dificultad al momento de compatibilizar el cuidado con las  
tareas del hogar, problemas familiares y económicos, pensamientos en torno al futuro de su familiar, circunstancias  
que con el paso del tiempo se convierten en estresores causando alteraciones en el bienestar emocional del  
cuidador.  
Palabras Clave: Nivel de carga, Cuidadores, Persona con discapacidad severa, Trabajo Social.  
Recibido: 28 de septiembre de 2020; Aceptado: 04 de enero de 2021; Publicado: 08 de enero de 2021.  
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1
. INTRODUCTION  
A study conducted by the World Health  
Organization and the World Bank (WHO &  
WB, 2011) states in the World Disability  
Report that more than one billion people  
worldwide live with some form of disability;  
of these, almost 200 million experience  
significant difficulties in functioning. In  
future years, disability will be an even  
greater concern, as its prevalence is  
increasing. (p. 5)  
with disabilities, of which 3,783 are severely  
disabled (CONADIS, 2020). Referring to the  
Health Center No. 2 in the city of Loja, this  
has a committee that is made up of 46  
informal caregivers of people with severe  
disabilities, where they receive training on  
the management and care of the dependent  
person, because they do not have  
professional training to develop the  
activities they perform, which causes  
considerable impact on the health of the  
caregivers.  
From ancient times to the present day, many  
studies have been conducted on the burden  
faced by caregivers of dependent persons,  
which shows that most of the time this role  
is assumed by women, and as a result of the  
various functions they perform, care causes  
them, health affects at the physical,  
emotional and social life. The term caregiver  
burden or overload has been used to refer to  
the tasks that the caregiver must face and  
the repercussions that this has for her.  
People are not prepared to care for a  
dependent person and must learn, and often  
improvise at the pace of problems that arise.  
Nowadays we live in a society that as a result  
of various accidents, chronic diseases, aging  
population or by birth, we face acquired or  
congenital disabilities, which means that the  
person with disability according to their  
degree of dependence, requires the care of  
another person. Going further in the review  
of literature we find that Ruiz and Nava  
(2012), define a caregiver as "the person  
who assists or cares for another person  
affected by any type of disability, handicap,  
or incapacity that hinders or prevents the  
normal development of his/her life activities  
or social relationships" (p. 2). Therefore, the  
caregiver, understood in terms of  
dependency, is "the person who facilitates  
(Arrieta, 2017)  
In Ecuador, there are approximately 485,325  
people with disabilities, noting that in the  
province of Loja there are 15,275 people  
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Level of burden on the caregivers of people with severe disabilities  
the life and complements the lack of  
autonomy of a dependent person, helping  
him or her with daily tasks such as cleaning,  
feeding, and moving, among others" (Ruiz &  
Nava, 2012, p. 163).  
Secondary caregivers: “people who  
collaborate with the primary caregiver in the  
care of the dependent person” (Álvarez &  
Morales, 2007, p. 23)  
Significant research has been carried out  
that has made it possible to delimit the role  
of the caregiver in relation to the dependent  
person, such is the case of a study carried  
out in Colombia, in the city of Bogotá, in the  
year 2016, by Ana M. Gómez, Olga L. Peñas  
and Eliana I. Parra, who mentioned that the  
functions of the caregiver of people with  
severe disabilities are directed to assist the  
basic daily activities, including preparation  
and consumption of food, major and minor  
hygiene, clothing, changing body position,  
support movements inside and outside the  
home, Collaboration in basic health care  
tasks, carrying out domestic activities,  
helping in the administration of medicines,  
money and goods, managing access and  
consultation of health services, solving crisis  
situations (emergencies or accidents),  
arranging and handling medical equipment  
According to the position of several authors  
it was possible to determine that there are  
different types of caregivers, for which,  
emphasis is placed on the following:  
Formal or professional caregiver: “is the  
person or persons with adequate training to  
care for the sick and who charge a fee for  
doing so” (Santamaria, 2009, p.9).  
Informal or family caregiver: “A person who  
provides care to a relative, friend or  
neighbor in need of long-term care on a  
regular basis, not through a professional or  
voluntary organization” (Lopez, Wens,  
Verhoeven & Remmen, 2012, p. 2).  
From the typology of informal or family  
caregiver, two subcategories of equal  
importance can be determined, they are:  
Primary caretakers: “the person in charge of  
most of the care of the sick person. He or she  
usually lives in the same home as the  
patient, or very close to it, and usually has a  
very close family relationship” (Santamaria,  
(
wheelchairs, oxygen, orthopedic aids, etc.)  
, to mediate in the communication with  
)
third parties and in the integration of the  
family with the cared person (to motivate  
visits,  
economic  
support  
and  
2
009, p.9).  
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accompaniment), to attend the visits and to  
Gutiérrez, Martínez and Rodríguez, (2013),  
define the “caregiver's burden” as “the  
psychological (mainly emotional and stress),  
physical, social and economic consequences  
that are generated in a family member or  
friend who is dedicated to the attention and  
care of another person”.  
accompany the leisure activities of the cared  
person, as well as to do "small tasks", like  
reaching or withdrawing some element that  
the person with severe disability requires.  
(p. 373)  
The execution of diverse activities of the  
home combined with the care of a person  
with severe disability causes in the caregiver  
an emotional wear that is considered as load  
or overload, being this a pathology that leads  
to a state of anxiety and depression, causing  
physical and emotional exhaustion,  
appearing symptoms that indicate the  
presence of the caregiver's syndrome. In  
Rueda's words, (2017), the overload can  
affect the physical and psychological health  
of the caregiver, causing symptoms of  
exhaustion, anxiety or depression, which put  
at risk the ability to continue providing care  
to the dependent person. Highlighting as  
primary factors in the emergence of  
overload, scarce economic resources, high  
costs of medications required by the  
caregiver, changes in multiple spheres of the  
caregiver's life, such as in the work, social,  
family situation and the lack of support from  
other family members in the care of the  
severely disabled person. Likewise,  
Therefore, it is necessary to frame the  
concept of a person with a disability,  
according to the Organic Law on Disabilities  
(2012), in its article 6 it states that a person  
with a disability is:  
All those who, as a consequence of one  
or more physical, mental, intellectual or  
sensory deficiencies, regardless of the  
cause that may have originated them,  
see their biological, psychological and  
associative  
capacity  
permanently  
restricted to exercise one or more  
essential activities of daily life. (p. 8)  
In Ecuador, according to the Ministry of  
Public Health in the Regulations for the  
Qualification,  
Re-qualification  
and  
Accreditation of Persons with Disabilities or  
with an Impaired or Disabling Condition  
(2018), there are seven types of disabilities:  
physical, intellectual, hearing, language,  
visual, psychosocial and multiple disabilities.  
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Level of burden on the caregivers of people with severe disabilities  
A very serious or severe disability is  
considered to be one that "includes severe  
permanent impairments that, meeting the  
objective parameters specified in each  
device or system, result in a very serious  
disability" (pp. 25-26). In accordance with  
what is established in these Regulations, to  
be considered as a severe disability, a  
percentage of 75 % or more is required.  
revolves around the person with a disability,  
motivating them to assume a positive  
attitude in the face of the different  
challenges that the disability brings with it,  
achieving autonomy and social inclusion for  
the person with a disability. Mobilizing the  
families of people with disabilities and  
empowering them to become aware, in  
order to seek alternative solutions to the  
complex situations that society imposes on  
them, and that in turn affect, prevent or  
delay the “process of Rehabilitation and  
Habilitation of the Person” (Lorna, 2014)  
Since Ituarte's position (1992), Social Work  
in the area of Health is considered as:  
The professional practice that aims to  
investigate the psychosocial factors that  
influence the health-disease process, to  
know the reality of each patient, in order  
to study and identify the networks of  
relationships (family, institution, situation  
In addition, it has a moral obligation to help  
people with disabilities and their families,  
providing educational spaces that allow for  
the elimination or minimization of the  
barriers that disability brings with it,  
of marginalization or exclusion).  
respecting  
“autonomy  
and  
self-  
(Rodríguez, Loor & Anchundia, 2017, p. 5)  
determination” (Silva, 2015). For this reason,  
it is necessary to design and direct  
intervention strategies where Social  
Workers and the interdisciplinary teamwork  
in parallel on the “personal and  
environmental conditions” that involve the  
person with a disability and his or her family.  
The social work professional intervenes in  
the social dimensions that establish the  
living conditions of the person with a  
disability, with the aim of eradicating or  
mitigating the social barriers that arise. He or  
she accompanies the person with a disability  
and his or her family throughout the process,  
deploying a range of strategies that allow  
them to resolve the social tension that  
Thus, the interdisciplinary team that deals  
with people with disabilities and their  
families, must have clear knowledge in the  
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field of disabilities and their problems, as  
well as the associative world, in the  
dynamics and characteristics of families,  
mastery of techniques and resources for  
working with families, updated knowledge  
of community resources (networking), skills  
and abilities with regard to the management  
and conduct of groups. (De Lorenzo, 2014, p.  
of burden faced by the caregivers of people  
with severe disabilities from the perspective  
of Social Work.  
2. METHODOLOGY  
A qualitative and quantitative study was  
carried out, leading to the search for  
information relevant to the problem under  
study, in different scientific databases. The  
population was conformed by 46 informal  
caregivers; and the intentional non-  
probabilistic sample constituted by 30  
caregivers that integrate the Committee.  
3
87)  
For the same reason, the Social Worker must  
possess attitudes and skills such as empathy,  
listening,  
receptivity,  
discretion,  
collaboration and open-mindedness without  
prejudice, motivation and initiative, provide  
emotional support, observation skills,  
control of oral and gestural language,  
flexibility to adapt to different situations,  
promote change in the face of negative  
situations, raise self-esteem and show  
attitudes of sensitivity, acceptance and  
respect towards people with disabilities and  
their families. (De Lorenzo, 2014, p. 387)  
The scientific method was used, which  
allowed the search and collection of relevant  
information to the study variables,  
facilitating the construction of the research  
background;  
the  
inductive-deductive  
method, allowing to delimit and pose the  
problem of interest and obtain a general  
knowledge of the problem; the analytical-  
synthetic method, allowing to analyze and  
systematize the information obtained  
through the graphic representation and the  
interpretative analysis of the results from  
the questionnaire of the Zarit's caregiver.  
Based on the above, this scientific article  
focused on determining the levels of burden  
faced by the caregivers of people with  
severe disabilities of the “Faith and Hope”  
Committee, through the theoretical and  
methodological foundation of the categories  
of analysis and the identification of the levels  
Likewise, the “Zarit caregiver load  
questionnaire” was applied, which aims to  
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Level of burden on the caregivers of people with severe disabilities  
determine the levels of load felt by the  
3
. RESULTS  
caregiver, which is made up of 22 questions,  
the score of each question ranges from 1 to  
The load levels in the caregiver of severely  
disabled people according to the application  
of the Zarit load questionnaire are  
represented in the following way (see graph  
5
points, adding up to a total score of 110, in  
an estimated frequency: 1 Never, 2 Rarely, 3  
Sometimes, 4 Quite often and 5 Almost  
always. If the caregiver obtains a score lower  
than 46, he or she does not present  
symptoms of overload, if he or she has 47 to  
1
): 40.00% of the population surveyed does  
not present overload, while 36.67% has  
intense overload and only 23.33% slight  
overload, giving a load level of the total  
sample 60% with a range between 47-86  
points.  
5
5 it indicates slight overload and if it is  
higher than 55 to 110 it shows intense  
overload.  
Graphic 1. Levels of overload in caregivers  
Level of overloand on caregivers  
4
0%  
Without overload  
3
7%  
Slight overload  
Intense overload  
2
3%  
Elaborated by: Research Team  
The following is a general presentation of  
the percentages broken down by items in  
Table 1, taking as a reference the questions  
of the Zarit Caregiver Load Questionnaire:  
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Table 1. Zarit Caregiver Loading Questionnaire  
Quite  
often  
Almost  
always  
Never  
Rarely  
Sometimes  
Do you think your family member is  
asking for more help than he or she  
really needs?  
Do you think that because of the time  
you spend with your family member you  
don't have enough time for yourself?  
Do you feel burdened by trying to  
balance care with other responsibilities?  
Are you embarrassed by your family  
member's behavior?  
8
5
6
2
1
2
9 (30,00%)  
(
26,67%)  
(16,67%)  
(20,00%)  
(6,67%)  
7
9
4
3
7 (23,33%)  
(
23,33%)  
(30,00%)  
(13,33%) (10,00%)  
9
12  
(40,00%)  
0
(0%)  
1
3
(10,00%)  
0
(0%)  
0
1
(3,33%)  
0
(0%)  
0
3
4
5
5 (16,67%)  
(30,00%)  
2
28 (93,33%)  
(6,67%)  
4
(13,33%)  
Do you feel angry when you are around  
your family member?  
25  
(83,33%)  
(3,33%)  
(0%)  
(0%)  
Do you think that caring for a family  
member negatively affects other family  
members?  
2
5
2
2
1
0
(0%)  
6
(
83,33%)  
(6,67%)  
(6,67%)  
(3,33%)  
Are you afraid for your family member's  
future?  
Do you think your family member is  
dependent on you?  
Do you feel tense around your family  
member?  
0
(0%)  
0
(0%)  
19  
2
(6,67%)  
0
(0%)  
9
9
(30,00%)  
3
8
11  
7
8
9
(26,67%) (36,67%)  
19  
(26,67%) (63,33%)  
8
(10,00%)  
2
0
(0%)  
0
(0%)  
(63,33%)  
(30,00%)  
(6,67%)  
Do you think your health has worsened  
because you have to take care of your  
family member?  
1
3
7
6
4
0
(0%)  
10  
(
43,33%)  
(23,33%)  
(20,00%)  
(13,33%)  
Do you think you are not as intimate as  
you would like to be because of  
caregiving?  
Do you think your social life has been  
negatively affected by caregiving?  
Do you feel uncomfortable distancing  
yourself from your friends because you  
have to take care of them?  
1
5
12  
(40,00%)  
2
1
0
(0%)  
11  
12  
13  
(
50,00%)  
(6,67%)  
(3,33%)  
18  
(60,00%)  
11  
(36,67%)  
1
0
(0%)  
0
(0%)  
(3,33%)  
22  
4
4
0
(0%)  
0
(0%)  
(
73,33%)  
(13,33%)  
(13,33%)  
Do you think your family member  
considers you the only caregiver?  
Do you think you don't have a lot of  
income for care and your own expenses?  
Do you think you will not be able to care  
for your family member for much  
longer?  
Do you feel that you have lost control of  
your life since the family member's  
illness began?  
3
3
3
7
14  
1
4
5
(10,00%)  
1
(3,33%)  
(10,00%)  
(10,00%)  
(23,33%) (46,67%)  
4
9
8
8
1
(13,33%)  
(30,00%)  
(26,67%) (26,67%)  
15  
10  
(33,33%)  
3
0
(0%)  
2
1
6
7
(
50,00%)  
(10,00%)  
(6,67%)  
21  
5
2
2
0
(0%)  
1
(
70,00%)  
(16,67%)  
(6,67%)  
(6,67%)  
Do you wish you could leave your family  
member's care to someone else?  
Are you undecided about what to do  
with your family member?  
Do you think you should do more for  
your family member?  
24  
(80,00%)  
24  
5
1
(3,33%)  
1
0
(0%)  
0
(0%)  
6
0
(0%)  
0
(0%)  
4
18  
19  
20  
(16,67%)  
5
(80,00%)  
(16,67%)  
6
(20,00%)  
(3,33%)  
6
8
(20,00%)  
(26,67%)  
(20,00%) (13,33%)  
23  
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Level of burden on the caregivers of people with severe disabilities  
Do you think you could take better care  
of your family member?  
In general: Do you feel very  
overburdened by having to take care of  
your family member?  
1
9
8
2
10  
(33,33%)  
2
1
2
(3,33%)  
(30,00%)  
(26,67%)  
(6,67%)  
16  
10  
(33,33%)  
3
1
0
(0%)  
2
(
53,33%)  
(10,00%)  
(3,33%)  
Note: Results of the application of the Zarit Caregiver Loading Questionnaire  
4
. DISCUSSION  
tasks, causing, over time, stress and the  
acquisition of feelings of vulnerability and  
guilt, symptoms that prevent the proper  
performance of activities regarding care.  
The burden on the caregivers of people with  
severe disabilities is a problematic situation  
that requires prompt attention from the  
competent bodies in order to design  
strategies that help mitigate the situation.  
Referring to the review of literature it  
became evident that in many investigations  
the population studied has presented levels  
of light and intense burden, such is the case  
of the caregivers under study, who through  
the application of Zarit's caregiver burden  
questionnaire was found that more than half  
of the sample surveyed presents symptoms  
of light and intense overload, due to the role  
they play. The fact of providing help for a  
long time causes discomfort, fatigue and  
physical and emotional exhaustion in the  
person who provides it. The study shows  
that some caregivers must provide excessive  
care, which implies the overload of tasks,  
preventing or leaving little time for the  
caregiver to develop their personal  
activities, so they are forced to extend their  
Many of the caregivers experience fatigue,  
overwhelm, suffering or frustration, while  
performing the activities of daily living and  
providing care to another person who is  
totally or partially dependent on them. This  
suggests a certain degree of overload on  
caregivers, taking into account that the  
responsibility of caring falls on the main  
caregiver, who does not have social,  
emotional and in the worst case family  
support. When this insecurity or imbalance  
occurs, the caregiver is exposed to stress,  
which can negatively affect their life in all  
areas, feeling alone, frustrated and  
misunderstood. Similarly, some caregivers  
have had broken relationships with their  
families because they do not have their  
support in caring for the person with severe  
disability, leaving the caregiver with full  
responsibility.  
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Another factor that affects the level of  
they recognize that they are overburdened  
and consider the idea of sharing the  
functions to be beneficial since it allows  
them to alleviate the burden of  
responsibilities involved in taking care of a  
person for a long time.  
acquired burden is that caregivers live with  
uncertainty and concern about the condition  
of the person with a disability, where fear  
takes over, generating stress, tension, worry  
and anguish, thinking almost all the time  
about the worst future for their family  
member. As a result of caregiving, caregivers  
maintain that they have experienced health  
problems due to the functions that this role  
requires them to perform for long hours, a  
situation that emerges as a result of the  
physical effort they make to mobilize the  
dependent person on repeated occasions,  
stimulating physical alterations such as back  
and joint pain, tiredness and headaches, in  
addition to experiencing few hours of sleep,  
a situation that prevents the correct  
functioning of the human being, becoming a  
stress and this in turn becomes an overload,  
considerably affecting the physical and  
psychosocial health of the caregiver.  
5.CONCLUSIONS  
60% of the committee's caregivers  
overloaded, with 36.67%  
are  
experiencing intense overload and  
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