RESEARCH ARTICLES

Discourses on tuberculosis: stigma and consequences for the subject ill

Káren Mendes Jorge de Souza^I; Lenilde Duarte de Sá^II; Filomena Elaine Paiva Assolini^III; Rodrigo Pinheiro Fernandes Queiroga^IV; Catiucia de Andrade Surniche^V; Pedro Fredemir Palha^VI

^I Nurse. Professor of Escola Paulista de Enfermagem. Federal University of São Paulo. São Paulo, São Paulo, Brazil. Email: karen.souza@unifesp.br
^II Nurse. Associate Professor of the Department of Nursery of Federal University of Paraíba. João Pessoa, Paraíba, Brazil. Email: lenilde_sa@yahoo.com.br
^III Pedagogue and Linguist. Professor of the Faculty of Philosophy, Sciences and Language Arts of Ribeirão Preto. University of São Paulo. Ribeirão Preto, São Paulo, Brazil. Email: elainefdoc@ffclrp.usp.br
^IV Nurse. Assistant Professor of Federal University of Campina Grande. Campina Grande, Paraíba, Brazil. Email: rodrigopfq@gmail.com
^V Nurse. Masters Student in the Graduate Program Nursery in Public Health of the Nursery School of Ribeirão Preto. University of São Paulo. Ribeirão Preto, São Paulo, Brazil. Email: catiucia.surniche@gmail.com
^VI Nurse. Associate Professor of the Nursery School of Ribeirão Preto. University of São Paulo. Ribeirão Preto, São Paulo, Brazil. Email: palha@eerp.usp.br

DOI: http://dx.doi.org/10.12957/reuerj.2015.16106

ABSTRACT

Falling ill with tuberculosis is a subjective process, which affects recourse to health care. The objective of this study was to investigate how discourses about tuberculosis affect the subject with tuberculosis undergoing hospital treatment. Sixteen tuberculosis patients, most of them male, mean age 37.5 years and incomplete fundamental education were interviewed, on a qualitative approach, in João Pessoa, Paraíba State in 2009. The material was organized using Atlas.ti software and analyzed within the theoretical and methodological framework of French discourse analysis. It was observed that the discursive position of tuberculosis patients refers to a place of passivity, due to the imaginary formations that signify them as subjects with rights that are not claimed, and who therefore suffer a process of erasure and exclusion. In conclusion we identified a need to develop ways to end the stigma attached to being ill with tuberculosis, by questioning discourses that have crystallized, particularly in health care institutions.

Keywords: Tuberculosis; stereotyping; qualitative research; hospitalization.

INTRODUCTION

The extent of the social impact of tuberculosis (TB) places the disease in the list of the most worrying health issues in the world scenario. Throughout the 20th century, TB's status was characterized by profound changes. The diagnosis and treatment have gained technological resources; the profile of the population affected by tuberculosis has changed; the risk of contagion has changed; the possibility of cure has become effective; government policies to combat the disease have changed and metaphors associated to the disease have been renewed¹.

In spite of the scientific advancements in the prevention, diagnosis and treatment of the disease, it is still observed that TB is feared because it expresses something considered socially reprehensible. Thus, the stigma remains in the social imagery − and in the relationship between society and patients − associated to the aggravation of the disease².

It is known that an efficient diagnosis of TB condition does not depend only on the form of organization of the health service and availability of diagnostic tools, but also on the subjective aspect of patients, which involves the meaning of falling ill³.

The experience of falling ill is a subjective process, pervaded by knowledge, discourses and practices, all produced culturally and historically in the social life and nourished by an interdiscourse linking the disease and patients, which resonates and affects individuals who are ill.

Highlighting the importance of analyzing the needs and perceptions of people affected by TB, a Brazilian study, which researched the delay in seeking health services for diagnosing TB in the city of Ribeirão Preto, showed that the personal choices of people affected by an illness are crucial in the seeking of health care. Such choices express the subjective and collective constructions about the falling sick and the treatment⁴ of the disease.

The stigmatization of TB can be found in several studies and shows to be related to the social imagery that the disease^2,5 holds; to the interruption of chemotherapeutic treatment⁶; to the need of broadening the dissemination of information about TB⁷; to the creation of barriers to early diagnosis⁸. However, a gap remains to be better understood within this knowledge, which is understanding the consequences of such discourses on people admitted to hospitals.

A study on the quality of nursing care and satisfaction of hospitalized people showed that the social needs of patients were given little importance by the nursing staff. The authors stress that being admitted into a hospital has an effect on several human needs, including those of psychosocial nature, namely: self-esteem, self-image, attention, acceptance, gregariousness, recreation and leisure⁹.

The nursery care must be directed to human needs using a comprehensive approach; yet, some professionals, due to biomedical conceptions, give little importance to the aspects connected to the patient's humanity. In this context, in order to care for the wholeness of the human being, authors suggest considering clients as partners in the building of care; value cultures; recognize the importance of the body as source of knowledge for the care/education/research¹⁰.

In view of the foregoing and taking in consideration the relevance of the subjectivity in nursery care, this research aimed at investigating how discourses about TB affect the ill subject who is under hospital treatment.

THEORETICAL REFERENCES

The analysis from the discursive perspective seeks to understand the processes of meaning production, in the relations of language with its historical and social exteriority. Thus, the discourse analyst must perceive words moving towards producing the discourse, which, in turn, is represented by the effect of meaning between the interlocutors. It, thus, breaks the elementary scheme of communication: sender, receiver, code, referent and message¹¹.

As for discourse analysis (DA), the words do not hold a meaning themselves, as their meaning derives from the discursive and ideological formations to which they are affiliated. Thus, equal words may signify differently.

Language is a social and historical practice where meanings come from its crossing by ideology and its relations with subjects. The word is not transparent, neutral, or evident; thus, there are many ways for subjects to signify and be signified.

It is also worth highlighting the concept of subject position, as the place from which the subject speaks is related to the production of forces and power relations, which affects meanings produced in the language. Therefore, social roles are not what works in discourse, but the subject positions, constituted by ideological formations¹¹. In this sense, for instance, a nurse can speak both from the position of a health professional or from the position of the patient.

From that theoretical texture, this fundamental concept as well as others from the discourse analysis device of analysis and interpretation will be mobilized. Thus, what is sought is listening to beyond the evidence, welcoming the opacity of language, the constitution of language by history in the production of meaning and the different discursive positions that can be occupied by subjects, manifested in the one's speech both, through ideology and the unconscious .

Considering then that incompleteness and silencing are constitutive of speech, that language is porous and subject and meanings are mobile, it is emphasized that interpretative gestures are not finished or final, because there will always be other meanings to be assigned and unveiled, depending on the subject position and its socio-historical, cultural and ideological affiliations.

METHODOLOGY

The research was developed in a public hospital facility, between August and October 2009, in the city of João Pessoa, Paraíba, Brazil. The study involved 16 subjects, ill with TB, admitted as inpatients, 13 of them of male gender, with median age of 37.5 years (20-60 years). As for their education level and professional life, there is a predominance of incomplete primary school education and agricultural work.

The participants in the research were selected based on the following criteria: being above eighteen years of age; being admitted to the phthisiology sector during the period of data collection; and not having clinical contraindications to participating in the study. After the exclusion criteria were applied, 16 ill subjects were interviewed. The data saturation technique was applied, which indicated the use of discursive excerpts from seven of the subjects.

Through applying the qualitative approach, in-depth interviews were carried out and recorded in audio. The question of the interview for this analysis was: How was your life after the discovery of the disease? In a field diary, impressions were registered about the contact with the subject interviewed and the study environment.

The corpus for analysis in the study consisted of transcribed excerpts from the interviews, plus the conditions of production. After the complete transcription of the interviews, a database was organized using software Atla.ti, version 6.0, which assisted in the management of crude language material, making possible the cut of correlated excerpts of language and situation, for later procedures of the French DA: passage from the linguistic surface to discourse; passage from the discursive object to the discursive formation; passage from the discursive process to ideological formation¹¹.

This study is connected to the thematic project "Retardo no diagnóstico da tuberculose: análise das causas em diferentes regiões do Brasil" (Delay in tuberculosis diagnosis: analysis of reasons in different regions of Brazil), which was assessed and approved by the Committee for the Ethics in Research by the Center of Health Sciences, of the Federal University of Paraíba, with its registration number 0589. All ethical principles were respected throughout the conduction of the research and release of results. In order to keep participants' privacy, a numbered code from S1 to S7 was used, representing the subjects (the numbering of interviews that was considered).

Grounded on French DA school, this research is expected to contribute to the problematization of institutionally-legitimated discourses on TB and which are present in the field of biomedical knowledge and practices, aiming at subsidizing the production of nursery care focused on clients and their satisfaction.

RESULTS AND DISCUSSION

The study involved 16 subjects, ill with TB, admitted as inpatients to that hospital, 13 of them male subjects, with median age of 37.5 years (20-60 years). As for their education level and professional life, there is a predominance of incomplete primary school education and agricultural work.

Discourses about the relation between the TB and stigma were analyzed, and the positions from where the effects of meaning were produced were observed. In this process, we sought to scrutinize the consequences of such discourses for the patient under hospital treatment. Here are the accounts:

After this problem appeared, I kept away, right? Friends pull away afraid of catching the symptoms (S2, male, 39 years, incomplete elementary school education, wall painter).

[...] I was sad, friends didn't want to be near [...], because I had this sickness, no one wanted to drink near [...] I felt like a strange fellow, without anyone, not even my family wanted to talk to me. I felt like a person, tuberculous, who nobody wanted to know of, because I was with this sickness (S1, male, 28 years old, incomplete elementary school education, poultry farm caretaker).

What has changed in my life? That is a good question. I think my way of living, my way of thinking. A little of discrimination, because a little of that will take place, that's for sure. (S3, male, 37 years, incomplete elementary school education, fisherman).

The results of the interpretative gestures are presented in the sequence.

In the discursive materiality of the three previous excerpts, it can be found signals of the striking character of TB's stigma. In the signifier tuberculous, present in the second excerpt, the subject reunites a web of meanings that refer to a deviation of normality and to strong prejudice. The discourses of these excerpts offer evidence that these subjects identify with the dominant discursive formation, which spread meanings related to the stigmatization historically connected to the disease.

It is worth noting that unlike the last two excerpts, which are inscribed in discursive formations that lead them to resign to the isolation from family, friends and colleagues, it seems that the first does not want to fulfill what was imagined from him: staying away from the people with whom he maintained emotional ties, like his friends. This statement can be seen on the signifier 'right', followed by the question mark. Such signifier produces the meaning of doubt, questioning, what tries to break up with the ideological formation, by which the TB patients would be condemned to experience the distancing of close people.

The psychosocial need of belonging to groups in which one has social roles is harmed in cases where the discourse that the TB patient is socially undesired echoes, as it was verified from the following excerpt:

This disease bothers a lot. Sometimes I accept it. Sometimes I don't, but I hold myself, you know? I hold myself not to burst into tears [...] When I am home, I don't like to be out, because of it, of the illness, you know? (S4, female, 36 years, incomplete elementary school education, housemaid).

Thus, the social segregation meanings analyzed offer some evidence that the stigma, which has been accompanying TB for centuries, is still present nowadays, having a role into making the clinical condition of the patients very complex. Reinforcing this production of meaning, some TB patient stereotypes are produced from the participation of the subject in ideological formations that naturalize TB as a disease of the impoverished segments of the population. In this interpretative ideologically driven direction, a subject of the study describes the TB patient:

[...] disconsolate, skinny and sad (S5, female, 60 years, not schooled, farm worker).

Prejudice and social distancing experienced by some TB patients, immobilize them many times, making difficult their shift to discursive positions where their voices may trigger positive changes related to their health, which could impact their life quality. However, it is necessary to emphasize that the experiences of falling ill and interpretations arising from them are plural and dynamic. A study made in Unidades Básicas de Saúde (Primary Health Care Centers) in Rio de Janeiro – RJ, showed that, although TB is a socially stigmatizing disease, most individuals with TB who were interviewed (54%) rated their life quality as being good, particularly due to the adhesion to treatment and fast improvement in clinical conditions¹². In our research, however, it could not be different, because the ideological formations that, in discourse, project discursive formations produce subjects who signify (themselves) as excluded, silenced, abnormal, among other stigmas. On that matter, a patient reports:

I was like this before, very quiet, ok? Now I am more, you know? Then I talk to people who visit me at home to ask me if I am doing better. I say I am. But my entire life, I've been this way, a little silent, ok? And with this [TB] it was, it is too much! But over time, we change (S4, female, 36 years, complete high school education, housemaid).

From the discursive viewpoint, the silence of this participant represents the signifying process at work, a silence of the emotion, of introspection and censure of whom may not speak due to the incompleteness of social acceptance. Consequently, there are subjects who cannot be the protagonists in their own health-sickness-care process. There is, then, an inversion in the way that producing health is understood or imagined, a concept worth being discussed, as ill individuals should be valued for their knowledge, experiences and interpretation of the process.

In some cases, the discrimination suffered by TB patients is not something that leads them to fight for inclusion, as it is observable from other stereotyped categories. It is something that makes them quiet, not responsive and that socially immobilizes them, like the following participant:

I feel this way: ah... tuberculosis, be careful! That is contagious and such. It is really, isn't it? That is it, in spite of everything, right? It is a sickness that holds this sort of prejudice, but that's the way it is. Each mind is a different world. I do not look. I believe it is a right to protect we have, right? [...] So for me it does not change anything [...] I don't have anything to say. I think it is something that happens. We do not seek illness, right? They come, the sicknesses. (S6, female, 41 years, not schooled, housemaid).

The meanings in the next two excerpts refer to the mechanism of censure and interdiction of TB patients in their process of falling ill, contextualized in the discipline of hospital treatment. The changes perceived are reported by two of the subjects, as it can be observed in the transcription below:

[...] it changed a lot. I feel like another person, I already have other habits, thanks God for that. And from now on, get even better. The tendency is to get better, follow the rules, right? Nothing incorrect, we have to comply with it all to get better, right? (S2, male, 39 years, incomplete elementary school education, wall painter).

[...] I feel like this, getting treated, sick, but I accept it all. I don't expect anything bad (S7, male, 48 years, complete elementary education, machinery operator).

It can be noticed that, in the first excerpt, the subject identifies the biomedical discourse as an authoritarian discourse and attributes to the hospital, with its rules and routines, a sort of management of meanings, where 'follow the rules' is admitted. On the other hand, in the second excerpt the TB patient expresses his acceptance of the role of being ill/patient.

One of the criteria in the quality of health services may be the incentive to participation by the citizens in the decision of the sector, starting from the comprehension that health is a basic human right and questioning the principles of biomedical paradigms, which are founded on an authoritarian discourse¹³.

It is important to highlight that an authoritarian discourse is "the one where polysemy is contained, the referent is faded by the language relationship that is established and the speaker holds himself as the only exclusive agent, fading his relation with his interlocutor as well"^11:86. It is then contextualized, from the previous cited excerpts that, the hospital has the role of speaker, dictating its rules, and the TB patient, has the role of interlocutor.

Well, these issues about the policy of silence are related to the stigmatization of TB patients whose stay in the social space cannot avoid stigma symbols, which communicate the social identity of the TB¹⁴ patients, and which are used to signal to the community in general that those people are socially marked. Thus, analyses on the functioning of such symbols will be made in the context of falling ill with TB.

In the process of construction and legitimation of the deviation (interpretation of stigma), categories and nomenclature are created, besides the services targeting the deviants, of therapeutic, educational or assistance nature. Such services can be increasingly more professionalized and specialized, seeking a treatment method considered suitable for those deviants and adequate to their specificities and specific needs¹⁵.

These aspects can be related to the directly observed treatment (DOT) for TB, which has been recognized by the Ministry of Health as a key-element for strengthening patients' adhesion to treatment and for preventing the appearance of drug-resistant strains. The DOT consists of supervision during the taking of the medicine, at home, at health centers, at correctional facilities or, in the 'modalidade compartilhada' (shared modality). The latter is made in two health care centers, where one offers the medical appointments and the other, closer to the patient's home, is in charge of the DOT itself ¹⁶.

In this treatment modality, the nursery professional occupies the role of the care manager, for its leadership, humanization, therapeutic bond and development of actions for health education related to the vulnerabilities of the TB patient. What happens is that, at times, the perception of falling ill with TB has interpretative differences for the ill subject and for the health professional. Whereas the former claims for a holistic care, the latter emphasizes the functional and biological context¹⁸.

This treatment modality has been criticized by some researchers as a way of infantilization of the subject ill. "Ideas and attitudes about the DOT may express a higher degree of freedom about choosing the way of producing health actions, through singular therapeutic projects, which express the intersubjectivity of the person in DOT and of the health care professional with more autonomy and self-government"^17:880. From the discursive perspective, indicating the supervision to all people ill with TB, without regarding each individual's specific life context, seems more like a mechanism for the visibility of TB stigma than a decision grounded on socioclinical-therapeutic indications. Comparatively, we should think of the difficulty of several elderly people who live with polypharmacy to adhere to medicines.

In addition to the DTO, other specificities that highlight the visibility of the TB stigma were identified in the health services and academia: the use of social incentives to the subject ill with TB (basic food basket, transport assistance, etc.); the allocation specific labels in the handling of the process of falling ill (absent, suspect case); identification procedures (compulsory notification form, bookfor registering TB patients and treatment follow-up − also called green book, which was until fairly recently called black book − supervised treatment card, among others); and the excessive individuation of the deviant category (being ill with TB). Such procedures reinforce stereotyping, due to the emphasis on the intra-categorical homogeneity and inter-categorial heterogeneity¹⁵.

Finally, after presenting some analyses on the stigmatization of TB from the discursive viewpoint, it is reinforced that the "subjects and meanings can always be different. However, they not always are. It depends on how they are affected by ideology, on how they are inserted in history"^11:37. There is the expectation that readers can contribute to the deconstruction of these and other stigmas about TB, as well as for other chronic conditions, such as cancer, Hansen's disease, Acquired Immune Deficiency Syndrome and others of the kind.

CONCLUSION

Considering the discourses handled and the conditions of production inherent to them, one realizes that the subjects are affected by the discursive position assumed during hospital treatment, being sent to a role of passivity, due to imaginary formations that signify them as voiceless subjects, without rights to claim, thus suffering a process of erasure and interdiction of their insertion in some discursive formations.

Taking in consideration that meanings and subjects have mutual effect on each other, it is verifiable that, because TB patients are socially discredited due to the stigmas, they happen to see themselves and their previous identities as strange, in a process of juncture of the subject/patient/sick/contagious position. From that, a need is identified for health professionals and health administrators, especially nursery professionals, as professionals in charge of the DOT care, to take an attentive and critical position regarding the institutional practices reproduced and ideologically grounded on stigmatizing discourses. This position will contribute to the analysis and revision of DOT, among other strategies for the organization of health actions for TB patients, especially those in a position of vulnerability.

In this perspective, an opening for reflection is necessary – particularly from health institutions, due to their tendency of stabilizing meanings – and proposition of new directions that may contribute to the transformation of discourses impregnated with social stigmas, which reduces the opportunities of empowerment of TB patients as users of the Sistema Único de Saúde (Brazilian Public Health System). The fact that health services make use of the category deviation for the management of care rendered to TB patients produces meanings that are contrary to the discourse of empowerment of users and principle of equality in care.

It must be pointed, as a limitation of this study, the fact that discourses by health care professionals in relation to the discourses by the patients under TB hospital treatment were not analyzed, which would produce a more complex investigation on the phenomenon in the context of the interrelation of care.

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