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

Universidad Nacional de Loja (UNL). Loja, Ecuador. ryenisel@yahoo.es https://orcid.org/0000-0001-

5

698-1942

2

Profesora de la Carrera de Trabajo Social de la Universidad Nacional de Loja (UNL). Loja, Ecuador.

betti.reyes@unl.edu.ec https://orcid.org/0000-0003-3135-8606

3

Profesora de la Carrera de Medicina de la Universidad Nacional de Loja (UNL). Loja, Ecuador.

celsa.carrion@unl.edu.ec https://orcid.org/0000-0001-9684-2138

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%)

Do you think that caring for a family

member negatively affects other family

members?

2

5

2

1

0

(0%)

6

(

83,33%)

(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

(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

0

(0%)

0

(0%)

(

73,33%)

(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

7

14

1

4

5

(10,00%)

1

(3,33%)

(10,00%)

(23,33%) (46,67%)

4

9

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

0

(0%)

1

(

70,00%)

(16,67%)

(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

2

3.33% mild overload.

•

Factors such as not having the

support of other family members in the

care of the person with severe disability,

economic problems, thoughts about the

future of their family member, among

others, generate overload in the

caregiver affecting their emotional well-

being.

•

The long days of care, cause

affectations in the physical, psychological

and social health of the caregiver,

exposing them to fatigue, exhaustion and

difficulties in decision making.

The economic factor is another condition for

the appearance of the burden, due to the

function of caring, it is difficult to have a paid

job, therefore, they must rely on the

assistance provided by the Ecuadorian state

through the Health Center, with the delivery

of technical assistance. On the other hand,

•

The economic factor is one of the

greatest concerns of the caregivers,

despite being beneficiaries of the

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Level of burden on the caregivers of people with severe disabilities

Manuela Espejo Solidarity Mission with

an economic incentive of $240 per

month, they argue that they do not fully

cover their basic needs.

BIBLIOGRAPHIC REFERENCES

Álvarez, M., & Morales, J. M. (Eds.). (2007).

Guide for caregivers of dependent

persons. Volume 1. Málaga:

Andalusian

Association

of

Community Nurses. Retrieved from

https://bit.ly/3ni8KBs

•

In spite of the psychosocial effects

that the role of caregiver brings with it,

this is assumed by discarding the idea of

giving care to another family member.

Arrieta, E. (2017). How stress affects the

caregiver. Caregiver Overload (I)

[

Blog

post].

Retrieved

from

https://bit.ly/3nkBPvX

ACKNOWLEDGEMENTS

National Council on Disability Equality.

2020). Disability statistics. Ecuador.

Our deepest gratitude to the National

University of Loja, especially to the Research

Department in the person of Engineer Max

Encalada, for being the one who opened the

doors for us to be part of this research and

allow us to carry out the academic and

research topic, to the different professors

for all the support given in the research, as

well as to the advisors of the same and to Dr.

Esthela María González Sisalima, Social

Worker of the Health Center No. 2 of the city

of Loja in District 11D01 of the Health Zone

(

Retrieved

from:

https://bit.ly/3jEG43m

De Lorenzo, R. (2014). Disability, protection

systems and Social Work. Spain:

Alianza Editorial.

Gómez, A., Peñas, O., & Parra, E. (2016).

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