THE CANCER CHEMOTHERAPY EXPERIENCE IN A PATIENT’S VIEW

The objective of this work was to understand the meaning of the chemotherapy from the patient’s point of view on the basis of interpretative anthropology and an ethnographic case study. A breast cancer patient was selected by predetermined criteria, the most important of which was that the patient should be initiating the chemotherapy treatment in order to be followed-up. Data were collected by semi-structured interviews, observations and a field diary. Data analysis was performed in two phases: first we identified the significant meaning unities; then we summarized the meaning that the patient attached to her experience as “the loss of control of her life”. This meaning stressed the changes of her social role, especially the difficulties to provide financial support to the family and the relationship with her children. The study emphasizes the need for the nurse care, who should follow up the patient throughout the whole process, trying to offer resources for the patient to resume control of his/her life during this critical period.


THE CANCER CHEMOTHERAPY EXPERIENCE IN A PATIENT'S VIEW
Anna Cláudia Yokoyama dos Anjos 2 Márcia Maria Fontão Zago   3   The objective of this work was to understand the meaning of the chemotherapy from the patient's point of view on the basis of interpretative anthropology and an ethnographic case study.A breast cancer patient was selected by predetermined criteria, the most important of which was that the patient should be initiating the chemotherapy treatment in order to be followed-up.Data were collected by semi-structured interviews, observations and a field diary.Data analysis was performed in two phases: first we identified the significant meaning unities; then we summarized the meaning that the patient attached to her experience as "the loss of control of her life".This meaning stressed the changes of her social role, especially the difficulties to provide financial support to the family and the relationship with her children.The study emphasizes the need for the nurse care, who should follow up the patient throughout the whole process, trying to offer resources for the patient to resume control of his/her life during this critical period.DESCRIPTORS: patients; neoplasms-therapy; drug therapy; anthropology, cultural; nursing

LA EXPERIENCIA DE LA TERAPÉUTICA QUIMIOTERÁPICA EN LA VISIÓN DEL PACIENTE
El objetivo de este estudio fue comprender el significado de la quimioterapia en la visión del paciente.
Este trabajo siguió los supuestos de la antropología interpretativa y del estudio de caso etnográfico.El caso consistió en una paciente portadora de cáncer de mama, ya operada, que se encuadraba en los criterios de selección, cuyo principal fue la realización de la terapéutica quimioterapia, con el objetivo de observársela durante toda la trayectoria.Colectamos los dados por medio de la entrevista semi-estructurada, observaciones y anotaciones en uno diario de campo.El análisis de los datos fue realizado en dos etapas: en la primera identificamos las unidades de significado; en la segunda sintetizamos el significado atribuido a la experiencia de la quimioterapia oncológica, que fue de que este tratamiento lleva al individuo "a la pérdida del control de su vida".Este significado resalta los cambios de los papeles sociales, principalmente las dificultades financieras para mantener la familia y las relaciones con los hijos.El presente estudio enfatiza la importancia del acompañamiento de la enfermera al paciente durante todo el proceso de tratamiento quimioterápico, buscando reconocer las influencias socioculturales y ayudar al paciente a reanudar el control de su vida en ese período crítico.

INTRODUCTION
There are basically four approaches to the treatment of cancer: surgery and radiotherapy as local treatments; chemotherapy and the use of biological agents (such as hormones, antibodies and growth factors) as systemic treatments.Chemotherapy plays a central role in cancer treatment, using drugs alone or in combination.These drugs interfere with cell growth, division and survival, killing not only the tumor cells but also normal cells that have similar biological characteristics (1) .
As a consequence, chemotherapy is associated with undesirable physical effects such as nausea, vomiting, anorexia, constipation, diarrhea, fatigue, mucositis, neuritis and bone marrow depression.The diagnosis of cancer has a considerable social impact on the patient's and his or her family's life, and the addition of the collateral effects of chemotherapy may contribute to the patient's feeling of impotence to react to the disease and fight for survival.
Health professionals recognize the importance of the various approaches for the cancer treatment, however their attention should not be limited to the care of the disease itself, but should extend to the environment that surrounds it.This means that the attention must extend beyond the biological world of the disease, to include the whole body of the patient in its sociological connotation.Under this perspective, the body is a culturally determined entity: the sense that the body is highly complex and its functions exceed the sum of its biological features, especially in cancer (2)   .
The present study is based on this perspective: it proposes to describe how the persons build the experience of submitting to the cancer chemotherapy.To achieve this end our objective was to use a case study to understand the meaning that the patient attaches to the experience of undergoing cancer chemotherapy.

THEORETICAL AND METODOLOGICAL FRAMEWORK
For the analysis we followed the thinking of the interpretative anthropology, which is oriented to understanding the experience from the perspective of the active participants.To attain this objective it is necessary to interpret the living world of the actors, to assimilate the process of constructing the cultural meanings of illness and treatment, and how they are incorporated into the language and the actions of the social actors (3-4)   .
Within this approach, culture is envisaged as a network of meanings assembled by the subject and shared by the social group, which serve as an orientation for the behavior of members of the group.
Cultural analysis is not primarily concerned with the behavior itself, but rather with the interpretation and understanding of what it transmits, since culture is related to the framework of meanings established socially (3)(4) .Thus, the cultural elements of the life in group -knowledge, beliefs and values -are normalized to constitute a symbolic system of common sense.Medical anthropology, derived form the interpretative anthropology, considers health and illness to be the result of the interaction of the biological, the cultural and the subjective experience (5) .The person who has cancer and looks for its cure may utilize the cultural elements to interpret the experience of undergoing chemotherapy, which is the object of the present study.
The anthropological study consists to unravel this meaning, either implicit or explicit in the individual's language, and to understand and interpret its intentions, history, background and subjectivity.
The subject's experience becomes public by means of the language, that is intentional, and the discourse can be understood by its meaning.Although the experience may be common to many individuals, knowledge is private because it requires both personal and inter-subjective elaboration, mediated by common sense, which serves as a reference for each individual (5)   .
Ethnography is the best methodological approach to study this subject, i. e. the meaning of the personal experience of cancer and chemotherapy, which requires the follow up of the disease, the therapeutic measures and the speeches involved (6) .
In this way, the methodology was adapted to an ethnographic case study.A "case" can be a person, a specific group of persons, an organization or a particular event; the only requirement is that it must have a physical or a social limit that confer identity to the case.Thus, a case may be chosen because it is an example of a class or because it is of interest by itself (6)(7) .

Online
Rev Latino-am Enfermagem 2005 janeiro-fevereiro; 14(1) www.eerp.usp.br/rlae In the present study, the case is a patient with breast cancer who had been mastectomized and was submitted to chemotherapy.She may be classified as belonging to the popular social class, on the basis of her social conditions, which included a amount of education, low income, and she was an urban dweller with restricted access to material and cultural goods (8-9)   .Although members of this social unit must have a particular way of expressing their individuality (9) , it is important to characterize the The non-structured observation focused on the attitude during the data collection, such as gesture, body signals, changes of voice intonation, which may be relevant for the posterior interpretation of the registered interviews.Notes about the interviews, the observations and the data from the medical file related to the evolution and medical follow-up were recorded in the field diary (7) .

METHODOLOGY
The interviews were transcribed and the data were integrated with those from the field diary.We carried out several readings of this material in order to identify the units of meaning.These units are segments of the report that have a specific meaning, containing the description of a situation or an experience, that reflect the importance that the participant attached to it.The units that we found were: the discovery of cancer and search for assistance, the knowledge about cancer, the trajectory of chemotherapy, the networks of support, the lack of control of one's life, the uncertainty about the future and the expectation in the future.
On the basis of these unities of meaning, we summarize the patient's view on her experience with cancer chemotherapy as "the loss of the control over one's life".

Case presentation
The patient, referred to here as Francisca, is Studies have shown that recognizing a body signal or symptom depends on the perception of a symbolic reference that orientates the individual within a system of knowledges and beliefs.Only after that the symptom can be recognized as the expression of a disease and an initiative can be taken before it.

Due to fear of the disease and the absence of pain
Francisca did not take the finding seriously and put off the search for medical advice, a behavior that is frequently observed among people of all social classes (10)   .
-The knowledge of cancer Francisca had information about cancer and its treatment that she had acquired from her social group, from her family and the media.Whenever Francisca referred to cancer she used a soft voice and used terms such as this, the disease, that, a subterfuge of language in the Latin-American culture that reveals the social stigma of cancer, since the disease is seen as a consequence of moral behavior (11)   .
During her life the patient had known other persons who had had cancer, besides her sister, and reported a situation that impressed her very much: There was this friend of ours that also had the disease in the intestines.My   (11- 12).
About the purpose of chemotherapy, the participant said: I think that chemotherapy is one way to fight… it is the same thing as the medicines that I take for flu.It is a treatment (8 th   -The networks of support At the same time that she was being treated with chemotherapy, Francisca resorted to her beliefs in the informal and religious system of cure.She used snake's powder and submitted to a religious treatment: I made the surgery with the doctor and soon went to a "Center".People living through a severe disease seek religion as a way to overcome difficulties.Religion has several cultural roles: it helps to create an identity that links people together, helps to cope with threats, and strengthens the fight for survival before a fatal disease.Under the influence of religious faith, the patients assume the speech of a better and stronger person, who preach solidarity and participate actively in the social group.By stating that religion helps raise the expectation of cure and to overcome the fear of death, of losses and of pain, people are stressing its role to restore the meaning of life (13-14).
Francisca told that during the period of The other patients with whom Francisca related at the chemotherapy outpatient clinic also functioned as part of the network of support: There are days when you meet good people in there!I was crying.Then, he calmed me down, talked to me, you know.With me!Then, one feels better, starts to talk and feels better!(7 th meeting).
Although the process of illness and suffering relates to personal and singular experiences, in the social context it is by means of relationship that people bring out their interior reactions to express emotions and feelings, since the lack of social relationship leads people to lose their reference or their identity (15) .
-Lack of control of one's life The third chemotherapy cycle represented a turning point in Francisca's life: it separates before The course of this woman's treatment reveals that chemotherapy excludes the patients from their social roles, making them feel impotent, increasing their uncertainties and threatening their integrity.The feeling of impotency is a consequence of how society establishes the appropriate behavior, appearance, contribution and productivity expected from each of its members, without giving them alternatives.Thus Francisca fights, submits herself to the situation, missing the control over her own life, but at the same time expecting a better future (13,15) .
In our Latin-American culture, suffering in relation to cancer and its treatment is commonly expected.Francisca behaved as she felt was expected by her group, facing the suffering caused by the drug reactions as an act of acceptance.Thus, even though her family and friends suggested that she communicated to her doctor that she was having severe reactions to the drugs, she did not behave this way, because this would not conform to the standard role of having cancer and suffering with the treatment.
-The uncertainty of the treatment and the expectation for the future As the treatment progressed, there was a continuous process of reinterpretation of the situations.We receive chemotherapy to kill everything!What a mess… you feel anything, no matter how insignificant, and you already think that it may be the end of the world!I go there, and the girl tells me that her disease has come back!Then I said: my god, to have to go through all this again?(5 th meeting).
After the end of the chemotherapy treatment, Francisca evaluated her experience and brought back her doubts about the success of the treatment: Do you wish to know?Sometimes I don't believe, because there are so The experience of oncologic... Anjos ACY, Zago MMF.
After approval of the project by the Institutional Research Ethics Review Board of the Faculty of Medicine of the Triangulo Mineiro, a representative patient was selected to carry on the case study.The woman invited to participate was receiving medical care in a specialized oncological hospital integrated into the Brazilian Health System (SUS = Sistema Único de Saúde) and fulfilled the inclusion criteria: being informed of the diagnosis and the treatment, being more than 18-year old, starting the chemotherapy treatment and agreeing to participate by signing a term of informed consent.
With every new course of treatment her expectations concerning the drugs were frustated: Up to the third time I felt that horrible sickness, you know!After the third time it became worse.It lasted for one week.Now I have this small sore in my throat.Some kind of inflammation, I don1t know!This treatment brings many changes to our body … (5 th meeting).With these statements, Francisca builds up her knowledge about chemotherapy and gives an interpretation to the different bodily reactions that she experiences in each step of the treatment.The myths current among the social groups conceive the physical reactions to chemotherapy as standardized patterns, i. e., every person who is submitted to chemotherapy must feel malaise, have nausea, vomiting, difficulty of eating, and other manifestations.

Francisca was anxious to
resume the sense of control, especially in view of what had happened with her sister, and with her own at the diagnosis, the surgery and the suffering of undergoing treatment by chemotherapy.However, the observation of other patients at the chemotherapy outpatient clinic made her consider the possibility of relapse of the disease, and this made her unsure about the success of the treatment: There was a patient who commented … she had it in the intestine.Now it came back in other part of the body.Why?