Sociodiscursive representations about leprosy in educational campaigns: implications on stigma reductionABSTRACT
Objectives: to analyze the socio-discursive representations about leprosy produced in posters of educational campaigns of the Brazilian Ministry of Health.
Methods: a documentary and discursive research about posters of campaigns about leprosy produced by the Brazilian Ministry of Health and available on Google Search Images. For the analysis, we used the Critical Discourse Analysis approach and the Grammar of Visual Design.
Results: the socio-discursive representations of leprosy are based on the biomedical ideology, through a normative-curative discourse that focuses on the dermatological manifestations of the disease. Regarding the construction of the compositional space, there are posters that emphasize the meaning that the disease does not prevent affectionate relationships, and others highlight as “new” the clinical manifestations of the disease.
Final Considerations: the normative-curative discourse produced in the campaigns is not enough to face stigma related to the disease. For leprosy to be understood as a common chronic disease, it is first necessary to fight the “social leprosy”: the stigma.
Descriptors: Leprosy; Health Communication; Health Education; Social Stigma; Communications Media
RESUMEN
Objetivos: analizar representaciones sociodiscursivas sobre lepra producidas en carteles de campañas educativas del Ministerio de Salud de Brasil.
Métodos: investigación documental y discursiva acerca de carteles de campañas sobre lepra producidas por el Ministerio de Salud de Brasil y disponibles en Google Search Imagens. Para análisis, utilizado el abordaje del Análisis Crítico del Discurso y Gramática de Diseño Visual.
Resultados: las representaciones sociodiscursivas sobre lepra basadas en ideología biomédica, mediante un discurso normativo curativista que enfoca manifestaciones dermatológicas de la enfermedad. Relacionada a construcción del espacio composicional, hay carteles que enfatizan la significación de que la enfermedad no impide relaciones de afecto, y otros remarcan como “nuevo” las manifestaciones clínicas de la enfermedad.
Consideraciones Finales: el discurso normativo curativista producido en campañas no es suficiente para enfrentar estigma relacionado a enfermedad. Para la lepra ser comprendida como una enfermedad crónica común, antes es necesario, combatir la “lepra social”: el estigma.
Descriptores: Lepra; Comunicación en Salud; Educación en Salud; Estigma Social; Medios de Comunicación
RESUMO
Objetivos: analisar as representações sociodiscursivas sobre hanseníase produzidas em cartazes de campanhas educativas do Ministério da Saúde do Brasil.
Métodos: pesquisa documental e discursiva acerca de cartazes de campanhas sobre hanseníase produzidas pelo Ministério da Saúde do Brasil e disponibilizadas no Google Search Imagens. Para análise, usou-se a abordagem da Análise Crítica do Discurso e a Gramática do Design Visual.
Resultados: as representações sociodiscursivas sobre hanseníase se pautam na ideologia biomédica, mediante um discurso normativo-curativista que focaliza as manifestações dermatológicas da doença. Com relação à construção do espaço composicional, há cartazes que enfatizam a significação de que a doença não impede relações de afeto, e outros remarcam como “novo” as manifestações clínicas da doença.
Considerações Finais: o discurso normativo-curativista produzido nas campanhas não é suficiente para enfrentar estigma relacionado à doença. Para a hanseníase ser compreendida como uma doença crônica comum, é necessário, antes, combater a “lepra social”: o estigma.
Descritores: Hanseníase; Comunicação em Saúde; Educação em Saúde; Estigma Social; Meios de Comunicação
INTRODUCTION
Although leprosy is a well-known disease and its treatment is proven to be effective, it is still a serious public health problem, since it is endemic in several regions of Brazil and causes serious physical and social damage(1-2). These repercussions are generated not only by the clinical aspects related to leprosy, but also by the maintenance of the health care practice of health professionals in the technical aspects related to the disease(3-4).
The fact is that leprosy draws attention not only for the magnitude of its public health problem in Brazil, but also for its stigmatizing aspect, coming from a dark past in which it was known as “leprosy”. It was a disease marked by segregation, mutilations, and considered a sin or punishment from God, in which the affected person was doomed to “social condemnation”(5-8).
So strong is this link between the present and the past of leprosy that not even the possibility of cure and the various strategies implemented by the Brazilian government over the years were enough to build a new image related to the disease in order to promote its control in Brazil(5,9). On the contrary, in 2019, 202,185 new cases were notified globally, and of these, 29,936 were diagnosed in the Americas, with Brazil accounting for 27,864 of these new leprosy cases. Moreover, a reduction in the proportion of cure of new cases diagnosed between 2012 and 2019 is observed, going from 85.9% to 79.4%, and expressive numbers of diagnoses of the disease in 2020, with 13,807 new cases(9).
In this sense, it is necessary to reassess the strategies implemented and seek to expand the visibility of campaigns on leprosy in order to review the current scenario of the disease in the country. Among them, we highlight the health education actions conveyed in the media practices, since the media coverage of health, understood as coverage/dissemination of health-related issues in the media, becomes an important strategy to expand the knowledge about the disease, promoting public debates about the necessary changes to be made to face the stigma(10-11).
The campaigns about leprosy, for example, may represent an effective strategy to reduce, mitigate or even eliminate stigma and prejudices about the disease. With this, we start from the premise that the educational materials act “as mediators in the production of meanings around the health discourses, as they are devices through which certain values, concepts and policies gain truth status and outline specific social practices”(12).
However, since leprosy is present mainly among the most socioeconomically vulnerable groups and because it contributes to the maintenance of social inequalities(13), does not have high media visibility, since the mediatization of health obeys the capitalist logic, which, most of the time, does not coincide with the interests and health needs of the population that is on the margins of society(13). In this way, leprosy gains the status of a Media Neglected Disease (MND)(14), having greater prominence in Purple January, the month that represents the fight against this disease.
However, not only the low visibility in media practices concerns, but also the discourses produced about leprosy in the materials used in campaigns, since they represent one of the elements of social life and a particular view of language in use, which, when interconnected with other social elements - economic, political, social, cultural, historical and religious factors - operationalize the social practice. This, in turn, is understood as “[...] habitual ways, in particular times and spaces, by which people apply resources - material or symbolic - to act together in the world”(15).
In this way, the discourses present in the posters of educational campaigns about leprosy become an important empirical object of investigation, since the discourse “mobilizes different elements - forms of action, people, social relations/institutional forms, objects, means, time/space and language”, allowing, through its critical explanatory analysis, to evidence the ideological and hegemonic conceptions present in the socio-discursive representations(15). Therefore, through discourse, one can act and represent the social world to which one belongs(15); and, in this sense, the speeches produced in educational campaigns about leprosy can be configured as a strategy to face the stigma related to the disease, contributing to fight discrimination involving the disease, one of the goals pointed out in the Global Leprosy Strategy 2021-2030(16).
In view of the above, the following guiding questions were formulated: How is the discourse on leprosy represented in the campaigns for the prevention of the disease produced by the Brazilian Ministry of Health? How are people affected by the disease represented in the posters produced by the Brazilian Ministry of Health for campaigns about leprosy?
OBJECTIVES
To analyze the socio-discursive representations about leprosy produced in posters of educational campaigns of the Brazilian Ministry of Health.
METHODS
Ethical Aspects
The study did not require the approval of the Research Ethics Committee, since it used posters referring to campaigns about leprosy made publicly available and with free access to the information on Google Search.
Theoretical and methodological framework
This study is based on the theoretical and methodological framework of stigma from Erving Goffman’s perspective(17). For this author, stigma is an attribute, and the stigmatized person is the one considered socially depreciated for having such an attribute. An attribute is understood as a deeply depreciating characteristic or mark that differentiates a person from what is considered “normal” by society(17). Another reference used was Critical Discourse Analysis (CDA), proposed by Norman Fairclough(15), which allows us to situate the discourse in a moment of social practice, observing how the selection of words within a set of grammatical options reveals the hegemonic representations of the context in which they were generated and the worldview that is being (re)produced - socio-discursive representations(15).
Type of study
This is a documental research, of qualitative and interpretative approach. The corpus of the research consists of posters referring to campaigns about leprosy produced by the Brazilian Ministry of Health and available in the digital environment - Google Search Images.
Study setting, data source, and methodological procedures
The search for the empirical material was done in Google Search Images, for being the most used search engine in Brazil and for offering among its tools the possibility of searching in specific periods. The inclusion criteria were: theme (leprosy), production (Brazilian Ministry of Health) and chronology (2010 to 2021). This time frame was due to the disclosure of Ordinance No. 3125 of October 7, 2010, which approved the Guidelines for Surveillance, Care and Control of Leprosy that include, among others, actions related to communication and health education. The year 2021 is justified because it is the year in which the last campaign was published until the preparation of this research. Posters that approached leprosy and other diseases at the same time were excluded.
In the first search strategy in Google Search Images, the term “leprosy campaigns” was used. Then, it was searched using “leprosy posters”. From these two search strategies, considering the inclusion and exclusion criteria, the corpus of the research was formed: eight posters about leprosy that express the campaigns produced by the Brazilian Ministry of Health. The posters were then saved in PDF format and inserted in the MAXQDA software, which, through the tools “Document List”, “Lexical Search” and “Code System”, allowed a better organization of the empirical material and a better visualization of the lexical recurrences and codes created by the researchers, enabling a closer approach and observation of the research material.
Collecting and organizing data
The lexical recurrences present in the posters about leprosy were collected, in addition to the meanings of the regularities found in the images, since the object of analysis are multimodal genre texts constituted by verbal and visual semiotic codes.
Data analysis
For the textual analysis of the posters, the critical discourse approach of relational dialectics proposed by Norman Fairclough was used, which aims to apprehend the social practice of individuals through the language used in discourses, considering the lived reality and that conditioned to historicity(15).
The methodological steps of the analysis process comprised: emphasis on a social problem, identification of obstacles to overcome the problem, function of the problem in practice, possible ways to overcome the obstacles, and reflection on the analysis. The operational procedures of the analysis are based on the Tridimensional Model proposed by Fairclough, which comprises the analysis of text, discourse practice, and social practice(15).
In the analytical category “text”, which consists of the descriptive step of the analysis, the vocabulary, grammar, cohesion and textual structure were taken into consideration. In this step, both textual form and meaning were examined. In the analysis of discursive practice, the interpretative stage, the formation of the statements, coherence and intertextuality were observed. The way the text was socially put into circulation was also examined. Finally, in the analytical category of discourse as social practice, we investigated the social structures associated with the discourse and the social event(15).
To analyze the images presented in the posters, we used the categories of the Visual Design Grammar (VDG), developed by Gunther Kress and Theo van Leeuwen(18), which aims to describe explicitly and systematically the meanings of the regularities found in images. In this analysis, the representational, interactional, and compositional meanings were considered(18).
In analyzing the representational meaning, the action of the characters represented in the images of the posters was observed. In the interactional meaning, the analysis considered the visual, compositional, and modality resources. In the compositional meaning, we observed the proportion of the framing of the human body represented in the images, the positioning of these images in the layout of the posters and their respective value (given/new); and, finally, modality was analyzed in terms of the commitment that the speaker assumes with what they say in their text(18).
RESULTS
Eight posters representing campaigns about leprosy, broadcasted in the years 2014 (Figure 1A, 1B and 1C); 2015 (Figure 2A and 2B); 2016 (Figure 3); 2018, 2019, 2020 (Figure 4); and 2021 (Figure 5), were analyzed. In 2014, three campaigns were produced; and in the years 2018, 2019, and 2020, a single poster was used to represent the campaigns. Most of the posters were produced to reach the general public, except for two from 2014 (Figure 1A and 1B), aimed at health professionals. The discourses constituted in them are multimodal, that is, they use communicative resources that converge to more than one mode of language - verbal text and images.
The main communicative objective observed in the posters is to inform about signs and symptoms, early diagnosis, treatment and cure of leprosy. In these approaches, the normative-curative discourse, technical and prescriptive language, and short statements predominate, with emphasis on affirmative and imperative constructions. These, in turn, seek to create a relationship of complicity between those who produce the posters (Brazil’s Ministry of Health) and their possible addressee, us (readers). It is not an order, but an advice, a recommendation, in a tone of instruction and advice: “it could be leprosy; it could be a serious disease; pay attention; look for it soon, if you have it, if you have it”.
Leprosy is represented in the verbal and non-verbal texts (images) through physical aspects, mainly through the dermatological manifestations of the disease. Verbally, the disease is represented as: skin patches; patches with decreased sensitivity; lumps and swellings on the body, whitish patches. And, in the images, disjointed parts of the body are presented with the clinical manifestations of leprosy.
Note that people affected by leprosy are represented in posters 1C, 3 and 4 by people of different ages, color/race, sex and social segments, who have faces, voices and gestures (smiles, attentive gaze), indicating that leprosy can affect anyone. In the images, the characters are represented in an affectionate relationship, touching each other’s bodies bi-directionally, with happy faces, sharing glances, kisses, and hugs, and with no allusion to the possible marks of leprosy. To convince us, the readers, of this representation, we used the naturalistic mode and the framing of the images in medium shot format, which aims to convey a close relationship between the viewer and the participant, enabling the complicity of emotions and feelings. On the other hand, in these same posters, there are, in lesser prominence, images of human body parts with visible signs of leprosy.
In posters 2A and 2B, fragments of the human body affected by the disease are highlighted to represent people affected by leprosy, and poster 5 used as strategy the abstract modality that suppresses and conceals the bodies represented there. These are hyperbolic images that use colors, lighting, and depths that are sharper than those of reality and, therefore, make the people represented there seem hyper-real.
The verbal texts presented in the posters are anchored in the biomedical knowledge, with the use of normative-curative language to represent leprosy, as observed in the following texts:
Poster 1A: “Keep an eye out for the signs and symptoms of the disease”.
Poster 1C: “family members who live together should be examined”.
Poster 4: “If treated. It will heal”.
This normative-curative discourse is articulated with instructive advice, in a mitigating tone - it could be leprosy; it could be a serious disease; pay attention; look for it soon - as the following texts demonstrate:
Poster 2 A: “Pay attention to the signs and symptoms”.
Poster 2B: “Skin spotting can be a serious disease”.
Poster 3: “Go for a UHS Health Unit right away”.
Regarding the construction of the compositional space in the mode “given/left” and “new/right”, only poster 1C potentially produces the meaning that people affected by leprosy touching, looking at each other, hugging and kissing each other is a novelty and that the disease does not prevent affectionate relationships. However, in posters 3 and 4, these affective bonds are represented as “given”; and the clinical manifestations of the disease, presented as “new”.
It was observed that, although the campaigns about leprosy have been produced and disseminated in different conjunctures and different governments/ideologies, according to the time frame of this study - Workers’ Party (PT), Brazilian Democratic Movement (MDB) and Liberal Social Party (PSL) - there is a standardization of the socio-discursive representation of this disease.
DISCUSSION
Health education comprises a set of knowledge and practices aimed at disease prevention and health promotion. It consists of a strategy for disseminating scientific information produced in the health area with the objective of making the population aware of the conditioning factors of the health-disease process and, thus, offer subsidies for the adoption of new habits and behaviors in health(19).
In Brazil, health education has been implemented based on two approaches. The first refers to actions focused on preventive and curative measures aimed at achieving health and coping with diseases; and the second prioritizes health promotion strategies as the social construction of health and well-being. The latter involves the entire population in the context of their daily lives, and not only the people who are at risk of getting sick. Both are aimed at excluding or minimizing the occurrence of diseases, taking into account the social determinants of health(19-20).
Among the actions implemented in health education, there is the preparation and dissemination of posters that make up the health education campaigns(19), empirical material of this research. When analyzing the discourse produced in the posters of educational campaigns on leprosy produced by the Ministry of Health of Brazil, it is noted that these contribute little to the confrontation of the stigma related to the disease, because they represent it and the affected people through biological and physical aspects related to the disease process. Thus, the socio-discursive representations about leprosy produced in educational campaigns remain linked to body aesthetics; and thus the stigma related to the disease is perpetuated. The stigma itself can assume different meanings and representations in different social contexts; the stigma of leprosy, in turn, finds its roots in the biblical records that associated the marks on the body caused by the disease(18) to divine punishment, imputing to the people who carried them the inextinguishable image of impurity and sin(21-22).
From the misrepresentation of the historical image of leprosy and people affected by it, stigma has become definitively associated with condemnation and distancing of people who bear the marks of the disease, which Goffman translates as attributes responsible for provoking a certain social distancing(7,17).
Moreover, the contrast between the images produced in the posters - “healthy” people experiencing affectionate relationships and close contact and disarticulated images of human body parts showing the physical manifestations of leprosy - reinforces the socio-discursive representations of the past, which reduced people affected by the disease only to physical aspects, disregarding their marks of belonging to certain social groups. What mattered in these people were only the marks presented on the body, because these were the ones that allowed the identification and isolation of the sick, with the justification of protecting the “healthy” people(23).
Today we try to veil that which is announced. In Medieval times, faces disfigured by illness were hidden behind a veil, and a bell announced the arrival of the sick(24). There is no longer a veil hiding the marks of the disease, but images of these marks outside the constitution of the bodies, in contrast to the representation of “perfect” bodies that contradict the experience and the living of those who have the disease(25).
This socio-discursive representation produced in the images presented in educational campaigns about leprosy reinforces that only “healthy” people can experience relationships of affection and social closeness, being deprived of these relationships those affected by the disease. To produce this discourse, the naturalistic modality was used, which gives the image greater proximity to reality, seeking to increase the credibility of the discourse produced(18).
Moreover, the opposition between “healthy bodies” and body parts with the marks of the disease reaffirms that which social practices place as “normal/standard” and thus activates stigmatizing beliefs associated with leprosy, which have become ingrained in the social imaginary, generating negative psychosocial repercussions in people affected by the disease, arising from the idea of mutilation, segregation, punishment and dishonor(6-8,25).
Even if the intention of these images of “healthy” bodies may be to restore the self-esteem of people affected by leprosy and promote a shift in the social imaginary from the terrifying images of leprosy (a disease that mutilates people)(7), such a strategy can have the opposite effect, because the differences between the images presented in the posters and the individual experiences related to the disease - physical, psychological and social changes due to leprosy - prevent a “normal life”, especially when it comes to social interaction(24,26). This is because experiencing leprosy is still associated with fear, shame, low self-esteem and reduced quality of life(25).
As a consequence, many people affected by leprosy choose to hide the marks of the disease with long clothing, in order to avoid experiencing stigmatizing situations(7), as was the case in the past for people identified with the disease. However, while they hide the signs and symptoms, they may seek diagnosis late and consequently delay the start of treatment, a situation that favors the appearance of physical disabilities(27) and prolonging the chain of transmission. Thus, they contribute to maintaining the endemic nature of leprosy in Brazil and perpetuate the stigma, which is triggered by the physical aspects associated with the physical manifestations of the disease(28).
Therefore, the stigma of leprosy, which manifests itself in attitudes of prejudice and rejection, generated by the fear of the disease, of its contagion and of the deformities that occur as a result of it(16,28), emphasizes that the current challenges related to it go beyond the biological aspects, highlighting that the psychosocial aspects gather more value than the disease symptomatology itself(24). Not even the institution of treatment that allows controlling the effects of the bacillus in the human organism, making a cure possible, and the change in the nomenclature of the disease from “lepra” to “hanseníase” in Brazilian portuguese (instituted in Brazil in 1975 and ratified on March 29, 1995 through Federal Law 9,010) were enough to minimize this stigma(23).
In order to learn about the challenges and gaps in the actions aimed at people affected by leprosy in Brazil, highlighting the actions in anti-discrimination policies and the best strategies to reduce stigma and promote inclusive development, Alice Cruz, United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their families, visited Brazil in 2019. In this visit, she highlighted that prioritizing the biological aspects related to leprosy is not enough to address the stigma related to leprosy(4).
However, the discourses produced in educational campaigns about leprosy focus on these aspects, both in verbal and non-verbal texts, highlighting the dermatological manifestations caused by the action of the bacillus in the human body. It is also identified the legitimation of the hegemonic discourse of medical-sanitary knowledge as dominant in the production of meanings about leprosy, using short affirmative and imperative texts with normative-curative discourse to advise the reader about the disease.
The hegemonic discourse seeks to naturalize and reaffirm a domination exercised by the power of a certain group over the others, seeking to universalize particular discourses in order to conquer and/or maintain social domination(15). In the posters that express the educational campaigns about leprosy, the sustaining of the normative-curative discourse guides the naturalization of the medical-health hegemony instead of questioning it, thus maintaining the respect and power of the medical class.
This normative-curative discourse, despite having been extremely important in the first campaigns prepared by the Brazilian Ministry of Health - not only for having informed the discovery of the etiologic agent and of the drugs for the treatment of the disease, but also for having announced that these discoveries would mark the end of compulsory isolation and the beginning of a “new” disease -, is currently unable to address one of the main challenges of Brazilian public health around leprosy, which is stigma(4). Therefore, it is important to denaturalize the hegemonic discourses in the representation of this disease and of the people affected by it, trying to keep new generations away from the excluding ideological constructions that still permeate leprosy(15).
Among the actions proposed in Alice Cruz’s report are the promotion of better conditions of access to health and well-being for people diagnosed with leprosy and a post-bacterial cure follow-up focused on the quality of life of people who, even though they are cured, need complementary health care and assistance(4).
In this sense, health education campaigns need to rethink the socio-discursive representations about leprosy and people affected by it. It is necessary to approach the confrontation of the disease beyond drug therapy, because this movement includes not only the physical aspect, but all its unfolding, including stigma(6,8,23). A discourse must be produced that goes beyond the cure and goes beyond the individual, to society and its values, the symbology of the disease, concepts and stigmas(7-8,23-24).
One cannot deny that building a new image for such an old disease is not easy, especially when it is related to the webs of social imagery, permeated with stigmas(7). It is observed that the discourses built around leprosy are related, even if indirectly, to the memories that refer to stigma and, consequently, to the losses linked to the construction of social identity and the exercise of full citizenship(6,8,23).
As it happened in facing the stigmatization of people with HIV/AIDS, the educational campaigns about leprosy should stimulate social mobilization, being collective resistance against discrimination(28). In this sense, they should avoid approaches focused on the causalism of the disease, which make it difficult to establish historical links with everyday life, overvalue epidemiological data, and are often unable to point out the social causes of illness(25,28). The approach should focus on the social determinations of the disease, to address the stigma related to it(29).
In this sense, there is a need to develop a critical and reflective thinking, which allows to propose transforming actions that lead people affected by leprosy to their autonomy and emancipation as a social subject, able to propose and opine in health decisions to take care of themselves, their family and their community(21).
Study limitations
The study had limitations regarding its representativeness, since the research corpus was composed of posters that express the campaigns produced by the Brazilian Ministry of Health; therefore, it was restricted to the reality of only one means of production. Having used only one search source, Google Search Images, may also have limited the research corpus.
Contributions to Nursing, Health, or Public Policy
The study contributes to reflection on how the discourses constituted and represented in posters that express campaigns about leprosy can reaffirm the stigma of the disease. It highlighted that the biomedical discourse predominant in the posters does not allow changing the social reality to the point of eliminating this stigma. Such reflections are important, to review both the planning of health education on leprosy implemented in health services and the care approach to people affected by the disease, since this study demonstrated the relevance of considering the social consequences involving the disease, the patient and the space occupied by him/her.
FINAL CONSIDERATIONS
The socio-discursive representation of leprosy in educational campaigns promoted by the Ministry of Health in Brazil occurs through the normative-curative discourse, which is not enough to face the stigma, because such strategy is unable to lead to a transformation of the social imaginary in relation to the disease. It is noted that highlighting a discourse of clinical improvement, free treatment and cure has not helped much in facing the stigma of leprosy.
This representation must go beyond “perfect bodies”, fragments of the human body marked by the disease and the attempt to build a “new” disease, disconnecting it from leprosy. It is necessary to promote a discourse that seeks the social cure of leprosy instead of trying to erase it from society, as if it had never existed. In this sense, for leprosy to be understood as a common chronic disease, it is first necessary to fight the “social leprosy”, that is, the stigma generated around it.
Therefore, a wide discussion about the social representation of leprosy is necessary so that the stigma is attenuated and the social imaginary associated to this disease is transformed.
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Edited by
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EDITOR IN CHIEF: Antonio José de Almeida Filho
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ASSOCIATE EDITOR: Rafael Silva
Publication Dates
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Publication in this collection
03 June 2022 -
Date of issue
2022
History
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Received
08 July 2021 -
Accepted
26 Nov 2021
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