structural approach of social representations of

ISSN: 1981-8963

DOI: 10.5205/reuol.4377-36619-1-ED.0710201304

Santos WS, Sales ZN, Teixeira JRB et al.

Structural approach of social representations...

ORIGINAL ARTICLE STRUCTURAL APPROACH OF SOCIAL REPRESENTATIONS OF PULMONARY TUBERCULOSIS ABORDAGEM ESTRUTURAL DAS REPRESENTAÇÕES SOCIAIS DA TUBERCULOSE PULMONAR ENFOQUE ESTRUCTURAL DE LAS REPRESENTACIONES SOCIALES DE LA TUBERCULOSIS PULMONAR Washington da Silva Santos1, Zenilda Nogueira Sales2, Jules Ramon Brito Teixeira 3, Ramon Missias Moreira4 ABSTRACT Objective: to describe the representational structure of pulmonary tuberculosis. Method: descriptive and qualitative study with 26 users of three health centers of a city in the interior of Bahia / BA, Brazil, suffering from tuberculosis. We used a questionnaire with the evocation inducing term "tuberculosis". Each participant raised up to five words, in decreasing order of importance, were processed by EVOC and analyzed by structural approach to social representations. The Research Ethics Committee approved the study protocol nº 162/2009. Results: showed up: the central system (wear, disease, and suffering), first periphery (difficult to follow the treatment has to be careful), second edge (God's help, contagious, beware) and contrast elements (weakness, death, prejudice). Conclusion: the representational structure of tuberculosis is multidimensional, is composed of negative elements that reflect on the treatment and stigma of the disease. Descriptors: Social Perception; Tuberculosis; Professional-Patient Relations, Health Planning, Public Health. RESUMO Objetivo: descrever a estrutura representacional da tuberculose pulmonar. Método: estudo descritivo e qualitativo, com 26 usuários de três centros de saúde de um município do interior da Bahia/BA, Brasil, acometidos por tuberculose. Utilizou-se um questionário de evocação com o termo indutor “tuberculose”. Cada participante evocou até cinco palavras, em ordem decrescente de importância, que foram processadas pelo software EVOC e analisados pela abordagem estrutural das Representações Sociais. O Comitê de Ética em Pesquisa aprovou o estudo, protocolo nº 162/2009. Resultados: evidenciou-se: sistema central (desgaste, doença, sofrimento), primeira periferia (difícil, seguir o tratamento, tem que se cuidar), segunda periferia (ajuda de Deus, contagiante, tomar cuidado) e elementos de contraste (fraqueza, morte, preconceito). Conclusão: a estrutura representacional da tuberculose é multidimensional, está composta por elementos negativos que refletem sobre o tratamento e estigma da doença. Descritores: Percepção Social; Tuberculose; Relações Profissional-Paciente; Planejamento em Saúde; Saúde Pública. RESUMEN Objetivo: Describir la estructura de representación de la tuberculosis pulmonar. Método: estudio descriptivo con 26 usuarios de tres centros de salud de un municipio del interior de Bahia / BA, Brasil, que sufren de tuberculosis cualitativa. Se utilizó un cuestionario con el término induce evocación "tuberculosis". Cada participante planteó un máximo de cinco palabras, en orden decreciente de importancia, fueron procesados por el software EVOC y analizados por el enfoque estructural de las representaciones sociales. El Comité de Ética de Investigación aprobó el protocolo de estudio nº 162/2009. Resultados: se presentaron: el sistema central (desgaste, la enfermedad, el sufrimiento), primera periferia (difícil de seguir el tratamiento tiene que tener cuidado), segundo borde (la ayuda de Dios, contagiosa, ten cuidado) y los elementos de contraste (debilidad, la muerte, los prejuicios). Conclusión: la estructura de representación de la tuberculosis es multidimensional, se compone de elementos negativos que se reflejan en el tratamiento y el estigma de la enfermedad. Descriptores: Percepción Social; Tuberculosis; Relaciones Profesional-Paciente, Planificación de la Salud, Salud Pública. 1

Physical Therapist, Master Teacher, State University of Southwest Bahia / UESB. Jequié (BA), Brazil. E-mail: [email protected]; Nurse, Professor Post-Doc, State University of Southwest Bahia / UESB. Jequié (BA), Brazil. E-mail: [email protected]; 3Nurse, Master, Graduate Program in Nursing and Health, State University of Southwest Bahia / PPGES / UESB. Jequié (BA), Brazil. E-mail: [email protected]; 4Physical Educator, Teacher, Graduate Program in Nursing and Health, State University of Southwest Bahia / PPGES / UESB. Jequié (BA), Brazil. E-mail: [email protected] 2

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INTRODUCTION Pulmonary tuberculosis (TB) is an ancient disease that threatens human health,1 with free treatment, the characteristics of which have been scientifically elucidated, however, still marked by the stigma involved. Being considered a serious public health problem worldwide, estimates of the World Health Organization (WHO) show that about 9.4 million new cases and 14 million prevalent cases of TB evolved with 1.6 million deaths attributed to this disease in 2009.2 As a result of combat actions and TB control developed by WHO, new cases are tending to decline, reducing the rate of 2.2% between 2010 and 2011. The mortality rate accompanies this rate declining 41% since the year 1990. Moreover, the world is about to reach the global target of 50% reduction by 2015.3 In this context, Brazil is among the 22 countries which account for 82% of TB cases in the world. The Ministry of Health, through the National Tuberculosis Control Program (NTCP), consider this disease as a major public health problem since 2003 and is proposed to control the search for cases, the implementation of early diagnosis and appropriate treatment and healing, aiming to break the chain of transmission and prevent new illnesses.4-6 The disease is closely linked to poverty and unequal income distribution, with deep social roots, besides taboos,7 beliefs and stigma of a symbolic nature,8 resulting in noncompliance of affected individuals and / or family / contacts. The representational structure is the result of historical interaction between these factors, which has enabled glimpse the familiar mechanisms of tuberculosis in everyday knowledge. This knowledge raises coping strategies of the disease on the part of health professionals who deal with the direct assistance to the individual patient as well as strategic planning and management in health education to combat stereotypical images of TB. Thus, this study of social representations in the light of thought developed by individuals who have the experience, can assist in the reorientation of care practices to these individuals.

OBJECTIVE  To describe the representational structure of pulmonary tuberculosis.

METHOD A descriptive, qualitative study,9 was supported by theoretical-methodological approach to structural or central10 Core of English/Portuguese J Nurs UFPE on line., Recife, 7(10):5858-65, Oct., 2013

DOI: 10.5205/reuol.4377-36619-1-ED.0710201304


Social Representations Theory (SRT).11 It was conducted in three health centers, which provide reference services in attention to individuals with tuberculosis in Jequié, Bahia, Brazil. For delineation of the sample was previously established inclusion criteria, which are: age over 18 years, be residing at the same address given in registration form or on the same microarea; being affected by TB chemotherapy or have it completed from the year, 2009. The exclusion criteria have clinical diagnosis of AIDS, considering it a possible bias representational. The study population consisted of 15 social subjects undergoing chemotherapy for TB and 14 who had experienced recently, totaling 29. As there was a refusal and two subjects were not found, the sample consisted of 26 participants. The contact with the subjects was mediated by nurses in health centers for those in treatment, and directly at the individual household, for those completed treatment. Address data were collected on index cards of patients in health centers surveyed, with the permission of the Municipal Health. For data gathering used a questionnaire biosociodemographic, in order to characterize the target population and specific information about the intended subject. We used also a questionnaire recall the inductive term "tuberculosis". Each participant rose up to five words that come readily to mind, and lists in descending order of importance.12 With this data we built a dictionary of words adjectives for the inducing stimulus. Then proceeded to an analysis of the semantic content encoding and data entry in software Ensemble L'Analyse des Programmes Permettant evocations (EVOC)13 2003 version. The EVOC reported the frequency and average order of every term evoked, by allowing the analysis of frequency values as law Zipff,13 establish the cutoff point that determined the composition of the four quadrants, which were analyzed according to the structural approach TRS. This study was approved by the Ethics in Research UESB, Protocol nº 162/2009. All participants signed an informed consent, ensuring your privacy rights, anonymity, confidentiality and security is absent from participation in the study without any injury to his person.

RESULTS The study included 26 subjects who experience or have experienced pulmonary tuberculosis and were 53.8% male, according 5859

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DOI: 10.5205/reuol.4377-36619-1-ED.0710201304



to Table 1, with a mean age of 42.38 ± 15.81, in a range between 20 to 79 years, with the

majority (46.2%) aged between 41 and 60 years.

Table 1. Profile biosociodemographic participants. Jequie-BA, Brazil, 2010 Variables Gender Male Female Age 20-40 41-60 60 or older Religion Adventist Atheist Catholic Deíst Protestant Marital status Single Married Concubinate Widow Divorced Scholarity Illiterate Fundamental Secondary University Non informed Progress of the treatment In treatment Concluded Previous treatment Yes No

n

%

14 12

53,8 46,2

11 12 02

42,3 46,2 11,5

1 1 5 6 13

3,8 3,8 19,2 23,1 50,0

7 3 9 4 3

26,9 11,5 34,6 15,4 11,5

2 16 6 1 1

7,7 61,5 23,1 3,8 3,8

12 14

46,2 53,8

3 23

11,5 88,5

With regard to religious belief, 50% of subjects reported being Protestant; regarding marital dominant concubinage was reported by 34.6% of subjects. Regarding education, primary level was reported by 61.5% of participants, 53.8% had completed treatment and 46.2% were still in treatment. Only 3 patients (11.5%) reported having had previous treatment for the disease, characterized as relapse. There were a total of 103 evocations containing 24 words after different approach for semantic similarity. The average recall commands medium was 2.5, whereas the maximum frequency has reached the value of 16, the minimum average of 7 and 3. Therefore, we analyzed the words and terms 12 and 12 deleted from the final analysis were evoked by less than three times. With this data, prepared a four-frame houses showing the words or terms evoked, as well as their frequency and average order of importance, as shown in Figure 1. Central core FM ≥ 7 OMI ≤ 2,5 TE F OMI A Wear 8 2,00 (-) Illness 10 1,00 (-) Suffering 7 1,86 (-) Zona De Contraste FM < 7 OMI ≤ 2,5 TE F OMI A Weakness 4 2,50 (-) Death 6 2,12 (-) Prejudice 6 2,33 (-)

First periphery FM ≥ 7 OMI > 2,5 TE F OMI A Hard 8 3,00 (-) Follow the treatment 16 2,94 (±) Have to take care 7 3,14 (+) Second periphery FM < 7 OMI > 2,5 TE F OMI A Help of God 4 3,25 (±) Contagious 6 2,5 (-) Take care 3 3,33 (+)

Figure 1. Board of Four Houses to the inducing stimulus "tuberculosis" among participants. Jequié -BA, Brazil, in 2011. FM = Frequency Average, TE = Terms Evoked; IMO = Average Order of Importance, F = frequency, A = Attitude, (+) = Positive, (-) = negative, (±) = Neutral

To describe the results we adopted the approach proposed by abric,10,12,14 where the terms that met both criteria recall most often and in the first place, ie, supposedly had a greater importance in the cognitive schema the subject, that is, if configured as a hypothesis core of social representation.

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In Figure 1 are distinguished four important elements for the apprehension of social representations,12,14 subjects on pulmonary tuberculosis. In this sense, shows the elements of the core (upper left quadrant): wear, disease and suffering; elements of the 1st edge (upper right quadrant): difficult to follow the treatment has to be careful; 2nd 5860

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periphery (lower right quadrant): God's help, contagious, beware, and contrast elements of representation (lower left quadrant): weakness, death, prejudice. It is found that for most words or terms evoked (66.7%) were assigned a negative attitude or direction. The words that make up the core of the representation of tuberculosis by these participants demonstrate sizing of negative attitude to the disease and has been shown through evocations wear, disease and suffering. Furthermore, the expression more raised (Follow the treatment) received neutral meaning in relation to pulmonary tuberculosis according to the perception of the subjects who experienced and composes the first periphery of this social thought. Unlike the classical idea of an opposition or contrast as opposed to the image presented in this study, the terms located in the right lower quadrant presents complementarity to the terms of the core. The terms evoked reinforce and / or endorse an attitude / position strongly negative about the stimulus investigated, substantiated by the expressions weakness, death and prejudice. Evocations with a positive or neutral, both corresponding to 16.7% each, are located in the peripheral system. Has to be careful and take care refers to attitudes with positive significance when considering the inducing stimulus "tuberculosis", demonstrating the broad aspects of care that they should have with yourself and the protection of the other, it is a contagious disease of difficult to treat, marked by prejudice and that can lead to death. God's help, neutral, relates to the expectations in the treatment and spiritual belief as a possibility for healing and reducing pain and tear brought about by disease.

DISCUSSION With respect to the factors biosociodemographic data from this study corroborate with other achados15 related to education of people affected by TB. It is noteworthy that historically tuberculosis, from the advent of modern chemotherapy, has been linked to extracts disadvantaged population, which can be correlated to a lack of access to formal education. Despite reports to the evasion of the challenge and the retreatment of patients with recurrent TB,16 the investigated group only 3 patients (11.5%) reported having had previous treatment for the disease. This may indicate a transition in the current state of treatment, with greater acceptance by individual diagnosed and lower dropout rates therapy.17 English/Portuguese J Nurs UFPE on line., Recife, 7(10):5858-65, Oct., 2013

DOI: 10.5205/reuol.4377-36619-1-ED.0710201304


Studies show the factors investigated as potential predictors of treatment dropout,18,19 which include: lack of access to health services, need for hospitalization, training or support for treatment adherence by health professionals, delay in starting treatment and long waits with care. However, the Brazilian public health strategy, based on the family health strategy, aiming to approach health care to the population, instead of waiting for a spontaneous demand, favoring the early diagnosis of TB.20 The spread of family health units, in conjunction with health centers, expands access, eliminating or minimizing some of the factors identified as at risk for treatment dropout. The family health strategy is a model reorientation,21 as having primary responsibility for monitoring certain number of families, located in a geographical area. Following this line of reasoning, it is understood that this action on the spot, an area linked with well-defined, favoring the activities of health education, enabling the individual to appropriate treatment of knowledge about the disease, promoting the building of social representations . Considering this context marked by myths, taboos, prejudices, killings, and other fears, beyond the possibility of cure resulting from treatment, is that the social representations of the subjects who experienced tuberculosis were built. These representations constitute an integrated system of two components, the core and peripheral elements, which function as an entity, where each part has a specific role and complement each other. Given the theoretical assumptions of the theory of the core, the upper left quadrant of Figure 1, likely core representation, consists of the elements most common and most readily evoked by the research subjects. The central system in their roles generator and organizer of the representation, it is shown as an element more stable and rigid, low tolerance to changes. In this perspective, the words that make up the core of the representation of tuberculosis by individuals who experience show a negative direction position with expressions like "wear" and "suffering." Such expressions seem to point to the experience of illness for the individual and his dynamic treatment, considered painful and time consuming because of the DOTS (Directly Observed Therapy, Short-course)22 and a minimum of six months. The perception of suffering, associated with tuberculosis, is enhanced by the feeling of sadness, loneliness, depression, or even by an attitude of ostracism by the individual 5861

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affected by the disease. The social rejection by non tuberculous is stigma and / or bias, lead to isolation or depression. Evocations "suffering" and "disease", here are the core, part of the social representations of tuberculosis in the study developed with health workers,23 however, the professionals perceived these terms appear in the second periphery of thought. The term "disease" was evident in the central core as the most frequent and early enunciated, which places it as the most important element in this quadrant. This range of meanings aggregates the terms "wear" and "suffering" permeates social life in a multidisciplinary, demonstrating that, according to the analysis of the four-frame houses, the process for tuberculosis can lead to an erosion of human relations . Such wear, often expressed by the distance of a few people, a trait expressed in the contrast across the term "prejudice", which was present in the evocations of health workers also in the lower left quadrant,23 sustaining the core. The interrelationship "suffering'' /" prejudice "can elucidate certain actions taken by certain individuals affected by TB, which are: social isolation, rejection from family, friends and neighbors because of the stigma and prejudice, difficulty in social rehabilitation and work due to the physical limitations resulting from the disease; feelings of denial, which can interfere with treatment, leading to rebellion, anxiety, apprehension, and irritability.24 The contrast area of social thought of the subjects who experienced TB demonstrates corroboration of evocations of the central core, with the complementarity between "weak" and "wear", which have strengthened their meanings in the first periphery across the term "difficult". These difficulties underlie different dimensions of the experience for tuberculosis, from the trodden path to diagnosis as well as to routine medical treatment. In analysis of the social representations of tuberculosis, another study points to the difficulties of treatment for the disease as one of the categories guiding the discussion. Under this scenario, the units of analysis mention the discomfort with the treatment, where subjects preferred not to discuss, because it would be less uncomfortable. The routine of supervised treatment is seen by people with the disease and health care in a reference as painful and even unnecessary, something that disrupts the routine. English/Portuguese J Nurs UFPE on line., Recife, 7(10):5858-65, Oct., 2013

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Evocations of this study, as the core ("wear" and "suffering"), the first periphery ("hard" and "follow" the "treatment"), the area of contrast ("weakness" and "prejudice") and periphery of the second ("contagious" and "take care"), invigorate the findings from a study of people undergoing supervised. The lack of physical vigor and the impossibility of maintaining activities once regarded as routine change the perception of oneself, inducing attitudes of social isolation, perceived as weak and sick people should not remain in the society of others. In this sense, the participants of this research refer about TB simply as "disease", as evidenced not guilt, punishment for sin, punishment, or any other associated metaphors,25 points to the naturalization of knowledge of tuberculosis disease and not as an evil spirit or divine sanction sin. Tuberculosis, a disease formerly associated bohemians, poets, lovers, or even disease,25 here appears connected to the central system evidenced only as "disease" and mentions its severity. This will give air to naturalization information mediatically transmitted, since this has been the strategy of the Ministry of Health of Brazil to promote health education in tuberculosis. Such is the importance given to the transmission of information about the disease, with the aim of raising awareness about data prevention, control and diagnostics, the Ministry of Health, through the GM/MS nº 2181, of November 21, 2001,26 establishing the national week of struggle and mobilization against tuberculosis, rather than just a national day to fight it. The recognition of having contracted tuberculosis brings up the thought of a possible fatal outcome. According to the study, the death is seen as a possibility more nearer.8 According to the results found in this study, the social perception of tuberculosis as a disease that leads to death reveals the need expressed in the central core by the term 'disease' in the contrast with the term "death" and the first periphery by "following the treatment." The use of DOTS as a strategy for TB treatment, recognized efficacy acquired over the years,27 making death not an outcome inevitable, but an eventuality possible. This perception is expressed by "following treatment" can be understood as a neutral, since the treatment is sometimes seen as necessary and in other circumstances such as painful. This sense is endorsed by the term "has to be careful", present in the first periphery and on "taking care", the latter in the second periphery. While seemingly 5862

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synonymous, when individuals evoke the expression "has to be careful," refers to positive attitudes of self-care and / or selfpreservation against the illness, however, when enunciate the word "careful", alluding to care for self and other and not harm others. This "take care" is backed by individuals in the knowledge that TB disease is "contagious", which creates in the individual the responsibility to treat themselves to avoid being a permanent source of contagion or spread of the disease. Historically, with the advent of modern antibiotics, the romantic view of tuberculosis is replaced by a more naturalistic vision, in which the individual is seen as the factor itself from contagion. In this sense, it is not just that tuberculosis is contagious, but the very way of life of tuberculosis due this preservation to distance them socially healthy society dictates. Although it has been shown the naturalization of thought expressed about TB through its identification as a "disease" that is "contagious" and that leads to "wear" and "suffering", the spiritual vision is not completely forgotten. This spiritual element is evoked in the phrase "God's help", which transfers to a spiritual plane that which was evidenced by the expressions evoked as the responsibility of the subject: "be careful" and "has to be careful." The element "help of God" can be explained by one of the qualities of the peripheral system that gives freedom to the representations of work in a frugal way, prescriptive regarding the organizing principle, from the results of specific cognitive structures (core), which allows subject to adopt behaviors in certain situations.14 The conduct evidenced here is to replace personal responsibility for factors beyond the spiritual origin. This notion of spiritual divine aid, a factor related to treatment or an aid to healing can come from social ideas previously nourished that the disease was the result of guilt, sin or transgression of spiritual values and established a result of divine punishment. Thus, expiated the guilt and achieved redemption, God help the purge this evil.

FINAL CONSIDERATIONS It was possible to describe the constitutive structure of social representations of pulmonary tuberculosis for individuals, who experienced, showing the central system, which is rooted in factors: wear, disease and suffering. In this sense, is a marked patent English/Portuguese J Nurs UFPE on line., Recife, 7(10):5858-65, Oct., 2013

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enunciation of negative attitudes towards for tuberculosis, bound to break the experience of suffering wearing the individual, as the treatment proceeds considered painful by the subjects. Unlike the core elements that demonstrate a position strongly negative, the peripheral system demonstrated attitudes sometimes negative, sometimes positive, enhancing the flexibility of the elements present in these quadrants and endorsing the stigma against the disease by mentioning negative attitudes through expressions like weakness, death and prejudice. Thus, it is increasingly urgent need for health professionals to promote a reorientation of practice of health education in order to combat the stigmatization of people suffering from tuberculosis, raising awareness through the social interaction of these through accurate and strategies continuing education.

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Submission: 2013/04/02 Accepted: 2013/06/14 Publishing: 2013/10/01 Corresponding Address Washington da Silva Santos Programa de Pós-Graduação em Enfermagem e Saúde Universidade Estadual do Sudoeste da Bahia Av. José Moreira Sobrinho, s/n  Jequiezinho CEP: 45206-190  Jequié (BA), Brazil English/Portuguese J Nurs UFPE on line., Recife, 7(10):5858-65, Oct., 2013

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