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PERCEPTION AND FEELINGS OF PATIENTS AND THEIR CAREGIVERS IN THE

COURSE OF ONCOLOGICAL TREATMENT: A LITERATURE REVIEW

Percepção e sentimentos de pacientes e seus cuidadores no enfrentamento ao tratamento

oncológico: uma revisão de literatura

Valdinei Ferreira de Jesus1

Fernanda Cardoso Rocha2

Jéssica Tayane Ferreira Lima Xavier1

Álvaro Parrela Piris3

Abstract: Cancer is a worldwide health problem that grew in incidence of 20% in the last decade, it can

be considered a chronic disease, which requires continuous treatment. This research is a study of integrative

literature review that aimed to understand the perceptions and feelings of patients and their caregivers in

coping with cancer treatment. To select the articles two databases were used, BDENF and LILACS, and

the sample of this review consisted of seven articles. After analyzing the articles included in the review,

the results of the studies showed that in addition to physical treatment, patients need caregivers’ support

not only mentally but also spiritually. The family needs an apparatus of professionals, complemented by

a psychological support service and also to create spaces facilitating the interfamilial communication

is required. Concerning the health team, it was evidenced the need for educational complementations,

concerning assistance in oncology, raising awareness and empowering from students to professionals and

professors.

Keywords: Oncology; Feeling; Perception.

________________

Corresponding author: Valdinei Ferreira de Jesus. E-mail: valdineipmc@gmail.com

1 Faculdades Unidas do Norte de Minas. 2 Faculdade de Saude Ibituruna.

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REVISTA UNIMONTES CIENTÍFICA

Montes Claros, I Congresso Nacional de Oncologia da Associação Presente - Agosto de 2017.

232

Resumo: O câncer é um problema de saúde mundial que teve um crescimento na sua incidência de 20%

na última década, pode ser considerada uma doença crônica, pois exige tratamento contínuo. A presente

investigação é um estudo de revisão integrativa da literatura que teve como objetivo compreender as

percepções e sentimentos de pacientes e de seus cuidadores no enfretamento ao tratamento do câncer.

Para a seleção dos artigos foram utilizadas duas bases de dados, BDENF e LILACS, e a amostra desta

revisão constituiu-se de sete artigos. Após análise dos artigos incluídos na revisão, os resultados dos estudos

apontaram que o além do tratamento físico, os pacientes necessitam de apoio dos cuidadores, tanto mental

quanto espiritual. A família precisa de um aparato dos profissionais, complementado por um serviço de

apoio psicológico e, também, é necessária a criação de espaços facilitadores da comunicação interfamiliar.

Referente à equipe de saúde, evidenciou-se a necessidade de complementações educacionais, referentes à

assistência em oncologia, sensibilizando e capacitando desde estudantes a profissionais e docentes.

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REVISTA UNIMONTES CIENTÍFICA

INTRODUCTION

According to data from the National

Institute of Cancer (INCA), cancer is a global health

issue which had a growth in the incidence of 20%

in the last decade. For the year 2030 it is estimated

that there will be approximately 21.4 million new

cases of cancer and 13.2 million cancer deaths in

the world. In Brazil, the estimate for the year 2014,

which will be validated for the year 2015, indicates

the occurrence of approximately 576 thousand new

cases of cancer, strengthening the magnitude of the

problem of cancer in the country.

1

According to Nettina (2014)

2

[...]cancer can be considered a chronic disease requiring continuous treatment. It consists of over 100 different conditions, characterised by the uncontrolled growth of abnormal cells and their dissemination. The mechanisms of normal growth and proliferation are affected, resulting in distinct morphological changes of the cell and in histological patterns aberrations. The malignant cell has the ability to invade the surrounding tissue and regional lymph nodes. The metastasis refers to secondary growth of primary cancer, has a natural history and predictable dissemination pattern [...]

The method of treatment depends on the type

of malignant neoplasia, the specific histological cell

type the stage, the presence of metastases and the

condition of the patient.

2

There are three main ways

of treating cancer: chemotherapy, radiation therapy

and surgery. They can be used in conjunction,

varying only on the susceptibility of tumors to each

of the therapeutic modalities and the best sequence

of their administration. Few are the malignant

neoplasms treated with only a therapeutic modality.

1

Being one of the types of treatment,

chemotherapy is a modality that refers to the use

of antineoplastic agents to promote the destruction

of tumor cells to interfere in the function and

reproduction of cells.

2

However, because it is a form

of systemic treatment, it reaches indiscriminately

all cells of the body, especially cells of rapid

proliferation, producing with this those unwanted

or toxic side effects; depending on the state of the

individual, disease staging and also of drugs used.

3

The chemotherapeutic treatment can be

neoadjuvant, adjuvant, curative or palliative. In

the neoadjuvant chemotherapy the purpose is to

make the tumors resectable or improve the patient’s

prognosis. The adjuvant, also called prophylactic

is initiated after the surgical treatment when

the patient presents no evidence of malignant

neoplasia detectable by physical examination and

laboratory tests. Whereas the curative is intended

to cure patients with malignant neoplasms for

which represents the main treatment (which may be

associated or not with surgery and/or radiotherapy).

Also, there is the palliative treatment, which is

indicated for the alleviation of signs and symptoms

that compromise the patient’s functional capacity,

but they are not passed, compulsorily, on his or her

survival. This is used to reduce the tumor, relieving

symptoms and improving the patient’s quality of

life.

1

The radiotherapy exerts its effects at the

application site and operates in the DNA of the

affected cells, preventing the multiplication of

these and/or inducing their apoptosis death. This

therapy is less aggressive to normal cells than

chemotherapy, because cells have greater capacity

to repair DNA than the malignant ones and, also,

the radiation is not a systemic treatment, reaches

only the cells that are located in the region for

which radiation is directed.

4

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REVISTA UNIMONTES CIENTÍFICA

Montes Claros, I Congresso Nacional de Oncologia da Associação Presente - Agosto de 2017.

234

Just as in the chemotherapy treatment,

the radiation therapy can be divided for various

purposes, namely curative, aiming to cure the

patient; the pre-operative, made prior to the surgery,

helping in the reduction of the tumor and thereby

facilitating the surgical procedure; the prophylatic

to sterilize possible microscopic tumor foci, usually

performed after surgery or after chemotherapy; and

finally, the palliative care, which aims to treat the

site of the primary tumor or metastasis, without

affecting the rate of overall survival of patients

and is used primarily in the analgesic and

anti-hemorrhagic circumstances, reducing pain and

controlling bleeding, respectively.

1

The surgical treatment of cancer is one of

the options in the oncologic treatment and can be

considered as: curative, palliative, prophylatic and

collection of material. The treatment is considered

curative when indicated in early cases of solid

tumors, in these cases the tumor is removed with

a margin of safety. Whereas the palliative, the

aim is to reduce the population of tumor cells or

control symptoms that put at risk the patient’s life

or undermine hir or her quality of life. In addition

to being used as treatment, this technique is

prophylactic, because for individuals who have a

genetic predisposition to a certain type of cancer,

may be recommending the surgery in order to

prevent the development of this neoplasm in tissue

or organ which may be affected. It is also made in

the identification of tumors (biopsies).

5

“Being with cancer brings a number of

physical, emotional, spiritual, cultural implications

and close contact with the own limitation and

finitude”.

6

“Taking into consideration its magnitude,

upon experiencing it, the individual goes through a

moment of reflection on life, because after the onset

of the disease it requires changes in life habits and

greater attention to the care with his or her health,

after all, cancer is subject to relapses.”

7

The consequences caused by cancer

treatment also influence the feelings of clients

and their families.

8

These are forced to adapt to a

new routine, the disease, with its disturbances and

stigmas, becomes part of the everyday family and

social life

9

It is essential to the emotional preparation of

the professional in order to provide the best possible

assistance, considering the therapeutic value of a

quiet and safe environment for the nursing staff,

patients and family members. In this context, a word

of comfort, the support of a company sufficiently

discreet and homey atmosphere in the presence with

the other may qualify the interpersonal relationship

among the nurses, patients and family members

who experience the process of neoplastic disease.

10

The experience of difficult situations

in a unit of oncology can awake a multitude of

sentiments to the caregiver, with emotional and

physical repercussions.

10

Aiming at contributing, adding and

extending knowledge about the subject, the objective

of this study was to understand the perceptions and

feelings of patients and their caregivers in coping

with cancer treatment, using the integrative review

of literature as a tool.

LITERATURE REVIEW

For the preparation of this review the

following steps were performed: establishment of

hypothesis and objectives of the review; criteria

for inclusion of articles (sample selection);

definition of the information to be extracted from

the articles selected; analysis, discussion and

presentation of results and the last step consists in

the presentation of the review.

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be ensured that all the relevant data be withdrawn

minimizing the risk of errors in transcription,

ensuring accuracy in tracking of information and

serving as a record.

The presentation of results and discussion

of data obtained was done in a descriptive manner,

allowing the reader to assess the applicability of the

integrative review developed in order to achieve

the objective of this method, positively impacting

the attempt to bring information to individuals, in

general, and by providing subsidies that help the

patients and their caregivers in coping with the

treatment.

After analysis of seven articles that met

the inclusion criteria established in advance, an

overview of the articles evaluated was presented.

Among the articles included in this review,

six were performed by nurses from various

specialties and one by a multidisciplinary team

composed by nurses, physiotherapists and doctors.

Of the articles evaluated, seven were developed in

hospital institutions. It was also observed that four

surveys were conducted in single institutions, and

three could not define the headquarter institution.

In relation to the type of journal in which

the articles included in the review were published,

five were published in journals of general nursing,

one in collective health journal and another review

of another area of health.

An analysis was made of the articles,

through a comprehensive reading and trying to

achieve the objectives proposed in the present

study. Next, table 1 presents the summary extracted

from selected articles.

following question was formulated: what are the

perceptions and feelings from the oncological

treatment in the patient’s life and his or her

caregivers?

Through the portal of online surveys of the

Virtual Health Library - BVS a search of scientific

articles was made using the keywords “Oncology

Treatment Feelings”, in an attempt to answer the

question, reaching 62 articles.

The inclusion criteria of the articles were:

articles published in Portuguese; with full texts,

which potrayed the theme for the research and

articles published and indexed in this database in

the last 5 years, period within 2011-2015; selection

of two databases: Latin American and Caribbean

Center on Health Sciences Informatio (LILACS) and

Brazilian Nursing Database (BDENF), and finally,

articles of relevance according to the application

of classification of vehicles for the dissemination

of scientific production, i.e., WebQualis, classified

in B2 or greater relevance. The only criterion for

exclusion of articles was quantitative articles,

because they do not fit the research. After setting

the criteria the search was performed and the final

sample of this integrative review that consisted of 7

articles.

For the analysis and synthesis of the articles

that met the inclusion criteria a synoptic table was

used specially built for this purpose, which included

the following aspects, considered relevant: origin,

the title of the article; authors; journal (volume,

number, page and year) and goal.

For the data collection a validated instrument

will be used, Ursi (2005)

11

, that through this will

Table 1 - Presentation of the synthesis of articles included in the integrative review

Origin Article title Authors Journal (vol., number,

page.,year) Goal

LILACS and BDENF

The parents’ daily routine with cancer and hospitalized. Duarte, M de L C; Zanini, L N; Nedel, M N B.16 Revista Gaúcha de Enfermagem. 33(3): 111-118, set. 2012.

Understand the parents’ routine with children hospitalized in a unit of

oncology and Pediatric Hematology Unit of a general hospital.

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Perception and feelings of patients and their caregivers in the course of oncological treatment: a literature review.

DE JESUS, V. F.; ROCHA, F. C.; XAVIER, J. T. F. L.; PIRIS, A. P. ISSN 2236-5257

236

REVISTA UNIMONTES CIENTÍFICA

After examining the contents, three

categories emerged: Feelings and perceptions

experienced by cancer patients undergoing

treatment; the family as caregiver for a family

member in oncologic treatment; the experience of

the healthcare team in patient care in oncological

treatment.

Feelings and perceptions experienced by cancer

patients in treatment phase

Different feelings were observed that

are caused when the patient is in the process of

oncologic treatment, due to the adverse effects

that it causes. It is well evident in all patients the

feeling of fear that death causes and often causes an

ambivalence between acceptance and denial of the

disease.

12-14

The fact of accepting and/or denying

represents only one form of the individual to protect

himself or herself of what brings him or her pain,

suffering and fear. And that the denial of the disease

within the psychological stages of coping with

same represents the stage at which the person does

not believe in the information given to him or her,

Continuação da table 1.

Origin Article title Authors Journal (vol., number,

page.,year) Goal

LILACS The trajectory of cancer is told by nurse: moments of revelation, adaptation and experience of healing. Justino, E T; Mantovani, M de F; Kalinke, L P; Ulbrich, E M; Moreira, R C; Abini, L.14 Escola Anna Nery. 18(1): 41-46, Jan-Mar/2014.

Describe the trajectory of people with colorectal cancer from diagnosis to the end of the chemotherapy.

LILACS The nurses’ coexistence regarding the oncologic patient cares. Salimena, A M de O; Teixeira, S de R; Amorim, T V; Paiva, A do C P C; Melo, M C S C de.10 Cogitare Enfermagem. 18(1): 142-147, jan.-mar. 2013.

Knowing the perceptions and feelings of nurses in a hospital of oncology reference in the diagnosis and treatment of patients with cancer in Zona da Mata Mineira. LILACS and BDENF Difficulties experienced by women undergoing treatment for breast cancer. Pisoni, A; Kolankiewicz, A; Scarton, J; Loro, M; Souza, M; Rosanelli, C.15 Revista Pesqui. Cuid. Fundam. (Online). 5(3) jul.-set. 2013.

Identify difficulties experienced by women with breast cancer in oncological treatment.

LILACS Musical meeting: nursing care strategy in chemotherapy to discuss sickness/ death. Bergold, L B; Lima, R

de; Alvim, N A T.13 Revista de Enfermagem UERJ. 20(2,n. esp): 758-763, dez. 2012.

To analyze the conceptions of clients undergoing chemotherapy and rooms for musical meetings about death and the resources used for solving them.

LILACS and BDENF Meaning of breast cancer according to women’s perception: from the symptoms to treatment.

Rosa, L M da; Radünz,

V.12 Revista Enfermagem UERJ. 20(4): 445-450, out.- dez. 2012.

Know the meaning of breast cancer, and the perception of the woman, in the time interval of the symptom of the disease to the adjuvant treatment.

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being a temporary stage that is soon replaced with

a partial acceptance. And already in the acceptance,

the facts begin to settle, causing to realize its

possibilities and limitations; and, generally, such

acceptance is geared to the religiosity.

12

The oncologic treatment is, in most cases,

time-consuming, exhausting and painful, and

results in changes in life style. At first, the side

effects trigger feelings of sadness and helplessness.

Each individual presents divergent reactions to the

antineoplastic treatment, taking into consideration

that ian individual suffering from cancer is more

sensitive, the denial is present at this stage and

should be worked for the success of the treatment

with fewer difficulties. However, when the

optimism prevails, it can be considered a strong

ally for himself or herself and for the caregivers

13

The difficulties of women in tackling the

oncologic treatment is evident and may be surgery,

chemotherapy, radiotherapy or in conjunction. A

number of difficulties were detected among women

regarding the involvement of the self-image,

being highlighed some adverse effects, such as

alopecia, prejudice, social rejection and physical

limitations. The issue of mutilation of the body,

due to mastectomies, be it partial or total, caused

feelings of sadness, hopelessness and despair, but

these women sought the religiosity as a refuge.

15

The bearers of cancer in treatment often

do not expose their feelings, as worries and fears,

silences with the aim of protecting their family

against possible reactions regarding the disease,

because in their vision, many times, their families

show more fear and this produces negative effects

on family relationships. When involving the family

and the other people of his or her socialising in this

new phase of his or her life, the subject can trigger

feelings of concern for their beloved people.

13

The family as caregiver for a family member in

oncologic treatment

The routine of parents of children with

cancer the feelings of fear, depression and guilt are

presented as evidences. Such feelings are associated

with concern about the future of the child referring

mainly to the treatment, interpersonal relations and

to professional aspects. The feeling of fear was

expressed with greater frequency among parents,

characterizing also the panic, fear, worry, insecurity,

anxiety, nervousness, distress, unrest, anguish,

despair, fright, fear among others. Many parents

have symptoms of depression with a predominance

of hopelessness, helplessness and despair. Each

one has a way of expressing their feelings, some

isolate themselves, cry and do not talk. Others show

their sadness visually, because it is in appearance

that many times there are signs of depression. With

regard to care for the family, the caregiver must

identify that this unit of care also needs assistance

to cope with moments of sadness. The faith, for

families, has an important role in emotional balance

and the acceptance of the disease, giving strength to

continue fighting.

16

The experience of the healthcare team in

patient care in oncology treatment

From reports of professionals interviewed,

it is identified the difficulty in not being intimidated

psychologically and emotionally before care,

showing emotion before the situations experienced

by them in theirroutine, even though caring for

someone with a severe pathology is considered a

difficult task, the assistance provided in this area

is full of positive feelings, such as the reward,

because the little that the team can offer to patients

and family members is seen as a great support

and the professionals are recognized before the

work they have done. This team lives with various

feelings, since the suffering until the professional

satisfaction, some facts disrupt them emotionally

and others make them fulfilled and happy

10

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Perception and feelings of patients and their caregivers in the course of oncological treatment: a literature review.

DE JESUS, V. F.; ROCHA, F. C.; XAVIER, J. T. F. L.; PIRIS, A. P. ISSN 2236-5257

238

REVISTA UNIMONTES CIENTÍFICA

The support to oncologic clients is

still exercised primarily through guidance and

clarification about the disease and treatment. The

health team can also present difficulties to deal with

the situation of death due to the bond formed with

the clients in treatment and their families, which

leads to suffering in the act. owever, understanding

the complexity of illness by cancer may promote

sensitive approaches, developing the care not only

in the physical dimension, but also psychological,

social and spiritual.

13

FINAL CONSIDERATIONS

In conclusion, the present bibliographical

research, in search of the best evidence available

in relation to the feelings and perceptions of

oncologic patients in treatment and their caregivers,

it is understood that in view of the vulnerability

that the disease brings, and in some cases death,

we may conclude that this treatment should not

only be focused on physical, but also, mental and

spiritual healing. It is essential to the dissemination

of therapeutic strategies that include psychosocial

support, aiming to reduce the anxiety related to

death during the cancer treatment.

A second part of this oncologic process is

the form in which the family face the treatment of

the disease caused by itsr undesirable side effects

until the fear of loss, in this process the need is

eminent for a better preparation of professionals

responsible for assisting daily, complemented by a

service of psychological support, in order to include

effectively this family in treatment, knowing that

his or her mental balance will influence directly on

the patient. It is also necessary to create spaces that

facilitate the interfamiliar communication.

There was a need for a theoretical/practical

approach more efficiently directed to the oncology in

all its dimensions so that the professional clinicians

are more prepared to deal with the demand that

they will face in their career. Raising awareness

and empowering from students to professionals

and Professors until the update of those whoch are

already working in the market.

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L; SALGE, A K M; SIQUEIRA, K M. Ser

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J; LORO, M; SOUZA, M; ROSANELLI, C.

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article/view/2029/pdf_858

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16. DUARTE, M de L C; ZANINI, L N; NEDEL,

M N B. O cotidiano dos pais de crianças com

câncer e hospitalizadas. Revista Gaúcha de

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Disponível em:

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v33n3/15.pdf

Acesso em: 03-04-2015.

Imagem

Table 1 - Presentation of the synthesis of articles included in the integrative review

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This article describes the experience of people who have hepatitis C, particularly their daily life and their experiences regarding the disease expressed in forums on the internet..

Assim, William James, que foi porventura o pensador que mais agudamente retomou a análise humeana sobre o eu, distin- guindo entre I e self, o eu sujeito e o eu objecto, e

Tabela 1 – O que entende por uma boa relação família – escola 99 Tabela 2 – Opinião sobre a participação ativa dos pais na educação escolar 101 Tabela 3 – Situações