ORIGINAL RESEARCH

Prejudice, stigma and exclusion: relatives' lives affected by asylum-based treatment of leprosy

Mônica Gisele Costa Pinheiro^I; Clélia Albino Simpson ^II

^I PhD student. Graduate Program in Nursing, Federal University of Rio Grande do Norte. Natal, Rio Grande do Norte, Brazil. E-mail: monicapinheiro_@live.com
^II Post-PhD student. University of Évora. Associate Professor of the Federal University of Rio Grande do Norte. Natal, Rio Grande do Norte, Brazil. E-mail: cleliasimpson@hotmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2017.13332

ABSTRACT

Objective: to identify whether relatives of patients with Hansen's disease treated in colony-hospitals were affected by the prejudice, stigma and exclusion that permeated the patients' lives. Method: this qualitative study, using thematic oral history, involved 10 relatives of former leprosy patients of both genders, aged 44 to 76 years, segregated in the São Francisco de Assis Colony Hospital in Natal. Data were collected, in June and July 2014, by interviews that were recorded, transcribed and the content subjected to thematic analysis. The research project was approved by the Research Ethics Committee of Rio Grande do Norte Federal University (CAAE 25922214.3.0000.5537). A network identification tool and open-ended questions were used. Results: two thematic dimensions – stigma and prejudice and social exclusion – revealed the influence of leprosy in how social relations were established. Conclusion: the results point to the obstacles that relatives of former leprosy patients experienced in social relations.

Keywords: Leprosy; social stigma; family; nursing.

INTRODUCTION

Leprosy is a disease that carries with it the marks of fear and prejudice, often associated with the idea of sin, which has excluded and segregated sick individuals¹. Inevitably, at present, social barriers involving leprosy make it difficult to manage patients and including their relatives in the health-disease process.

Therefore, understanding the life history of the family members of ex-patients is relevant because they have received the stigma of leprosy even though they had never carried the disease. Besides, this social condition still permeates those who are currently affected by leprosy. Establishing strategies developed by health professionals, especially nurses, in the management of leprosy patients and their relatives in a holistic and more humanized manner is crucial, especially considering the social consequences that involve the disease, the patient and their families.

Based on the assumption that people close to the patient were also victimized by society in the past, the objective was to identify whether family members of leprosy patients treated in asylum hospitals were affected by prejudice, stigma and exclusion that permeated patients' lives.

LITERATURE REVIEW

Leprosy is a chronic, infectious-contagious disease caused by Mycobacterium leprae, which manifests itself through dermatological and neurological signs and symptoms, especially in the eyes, hands and feet. Neural impairment alters sensitivity and can lead to physical disabilities, evolving into deformities, contributing to prejudice towards the leprosy patient².

The term Hansen's disease (most used in Brazil) honors the Norwegian physician, the discoverer of the etiological agent, Gerard Amauer Hansen, and was officially adopted by the Ministry of Health through Decree 76.078 of August 4, 1975, ratified by Federal Law 9,010 of March 5, 1995 ³ . Such a measure contributed to the construction of a new image of the disease, since the denotation of leprosy, in Brazil, refers to an incurable, disfiguring disease that affects impure people, which culminated in the segregation of sick individuals by removing them from the social environment and their families⁴.

Scientific evidence of the contagious character guided control measures based on deprivation of liberty through policies of compulsory internment in isolation institutions. Segregation has increased attitudes of prejudice in society, rooting the socio-cultural repercussions and negative myths surrounding the disease and the sick ones ³. In the State of Rio Grande do Norte (RN), these practices were carried out at the São Francisco de Assis Asylum Hospital, located in the municipality of Natal, which remained active for 65 years, from 1929 (year of inauguration) to 1994 (when it was deactivated).

Compulsory isolation reflected negatively on the lives of leprosy patients and their families. This prophylactic measure had a police character and disregarded the social relations that patients had established throughout their lives, resulting in the breaking of family ties⁵, according to what happened with children taken from their parents and put to live in special education institutions, such as the Oswaldo Cruz School, built in Natal-RN.

Even in the face of the technical and scientific advent, with the emergence of drug treatment and cure, the historical marks of leprosy and its sociocultural repercussions are still present today, observed in practices of exclusion and segregation of leprosy patients and their relatives in defense of social welfare⁴.

When thinking about the stigmatizing and exclusionary burden that accompanies the disease ancient times, it is understandable that the history of leprosy has been reproduced in the present, influencing the process of illness in leprosy by referring to the prejudice and beliefs of the past, rooted in prejudiced ideas and myths consolidated in the common sense imagination⁶.

Currently, leprosy has consisted of a worrying epidemic, establishing itself as a serious public health problem in Brazil, mainly because of its incapacitating power if not detected and treated early and adequately, causing physical and social damages⁷. In addition, ex-patients and their families have shown signs of social exclusion, prejudice and stigma left by the disease when it had no cure and was treated in an asylum environment ⁵.

Considering this reality, the performance of public management in the organization of health services aimed at attention to the patient with leprosy, as well as the engagement of health professionals, including the nurse, is essential to provide care in a comprehensive manner, involving the person carrier of leprosy, the family and their acquaintances. Practitioner must clarify doubts about the disease in order to combat stigma and to favor an adequate social living ⁸.

METHODOLOGY

This is a descriptive and qualitative study using thematic oral history as a methodological framework, which involves a set of procedures (project design, definition of the population segment and study network, questionnaire elaboration, interview, transcription and analysis) and allows the unveiling of a specific episode experienced by the collaborator (study subject), who became an active part in the construction of his/her story when narrating his/her experiences ⁹.

Following the assumptions of the thematic oral history, the study population was composed of the 52 relatives of ex-leprosy patients who were segregated in the São Francisco de Assis Asylum Hospital, from both genders, aged from 34 to 85 years, enrolled in the Reintegration Movement of People Affected by Leprosy in Rio Grande do Norte (MORHAN-Potiguar).

For structuring of the network, researchers considered the kinship relations by consanguinity of first and second degrees, between the collaborator and the former patient of leprosy; men and women over the age of 40; living in Natal-RN, during the period of data collection; and who agreed to collaborate voluntarily with the study. Exclusion criteria were: non-preserved mental faculties; and individuals with communication barriers that could jeopardize the effectiveness of the interview.

The zero point that started the establishment of the network was a coordinator of MORHAN-Potiguar, who is son and grandson of a former leprosy patient and, therefore, someone with a broad knowledge of the topic addressed in this study and aware of the components of the population. From the zero point, other participants that composed the network were recruited, totaling 10 collaborators.

Before data collection, the collaborators were invited to participate in the survey through telephone contact. The interviews were carried out at a date and place chosen by the collaborator, making use of a socioeconomic identification tool, as well as of comprehensive questions that directed their memories to experiences of the period when their relative was hospitalized in the asylum hospital, according to the purpose of the study. The interviews were recorded by audio recorder, transcribed, contextualized, transcreated and authenticated by the collaborators with the signing of concession letters⁹ . The collection and verification of the narratives took place in Natal-RN during the months of June and July of 2014.

The narrated stories are related to collaborators' experiences as relatives of former leprosy patients, experienced in their childhood after the diagnosis of the disease and consequent segregation of the family member in the São Francisco de Assis Asylum Hospital.

After verifying the transcribed material, the texts were submitted to the thematic content analysis¹⁰, enabling the identification of thematic axes, which were discussed with the scientific literature.

The accomplishment of this research was approved by the Ethics Research Committee of the Federal University of Rio Grande do Norte, under opinion No. 650.654/2014 and Certificate of Presentation for Ethical Appreciation No. 25922214.3.0000.5537. Before signing the Free and Informed Consent Form, collaborators were informed about their participation in the study. Subjects are presented with color names, preserving their anonymity.

RESULTS AND DISCUSSION

Ten collaborators were interviewed: six men and four women, aged from 44 to 76 years. Regarding the level of education, four of the subjects have completed the primary education, three studied until the high school and three referred to have a higher education. The degree of kinship between the study collaborator and the relative hospitalized in the São Francisco de Assis Hospital are described in Figure 1.

Figure 1 – Characterization of the degree of kinship existing between the collaborator and his/her relative who was hospitalized in the São Francisco de Assis Asylum Hospital. Natal, 2014
* Consanguineous relatives, as established in the Brazilian Civil Code.

Based on the analysis of the thematic oral histories narrated by the study collaborators, two thematic axes were identified: Stigma and prejudice and; Social Exclusion.

Stigma and Prejudice

Stigma is defined as a deeply derogatory attribute, a social provision that promotes disqualification of individuals or groups, making them unfit for social interaction. The attribute considered socially disqualified can refer to certain physical characteristics, behavioral and moral deviation or those transmitted to descendants, such as the tribal stigmas of race, nation and religion¹¹.

In the midst of studies aimed at stigmatized groups, the one constituted by leprosy patients, victimized by prejudice and exclusion, stands out. Throughout history, leprosy has been associated with the socio-cultural image that disparaged its carriers, leading them to difficulties in establishing social relations¹².

The term leprosy, Brazil, is pejorative and the disease used to stigmatize not only the patients, but also their relatives ¹³. Such reality is observed in the statements of the study collaborators, in which they confirm the feeling of stigma experienced by the presence of a family member with leprosy, as shown below.

We could not live with outsiders because they were afraid of leprosy. I did not have the disease, but my grandmother had. (Purple)

I did not like to hear people say that I was the son of a leper, although I have heard it many times. There was this latent prejudice. (Blue)

In high school, there was a boy that studied with me and he was forbidden by the older brother to talk to me because I was the son of a leper. (Orange)

Society has always sought to establish standards to categorize individuals according to their peculiarities, whether they are common or differentiated from the population, that is, when introduced to a stranger, one can recognize the stranger's attributes, which allows predicting the class to which that person belongs, categorizing him/her in some group or tribe ¹¹.

Specifically with regard to leprosy, stigmatization is related to the body marks resulting from infection by Microbacterium leprae and to the exclusion experienced by the disease carrier, physically marked by deformities in the body¹⁴. Unfortunately, the stigma also affected people who did not have the disease, such as the healthy children of leprosy patients⁴. The collaborators who were interviewed showed that, although they did not have any physical illness, they carried with them the brand of stigma for being a leper's child.

The defects in my father's body were easily seen, [and by extension] they marked all of us in the family, so people also had prejudice against us. (Black)

Our fathers had body defects! That is why there was prejudice and people were afraid to approach us. (Yellow)

People had prejudice because my mother and my brothers had the disease [...] And they always criticized me saying that I was the leper's son. (White)

The stigma of this disease is also associated with the religious tradition, since it restricts the social role of the individual by associating leprosy with beliefs about divine punishment and sin. Consequently, many of those people were socially segregated and victims of prejudices that have persisted in the present¹⁵.

The association between stigma and prejudice was characterized as an important factor for social exclusion and limitations in several dimensions of life¹⁶. Changes in social relations caused by prejudice and stigma could be perceived in the reports of the collaborators.

I was raised in a regime of prohibitions and restrictions, both in the visit to my father in the asylum and in the social living with my neighbors because prejudice was constant in the neighborhood; people used to point at us. (Black)

There was so much discrimination and prejudice against us that the day the school principal announced the names of the first places he told the people to be careful because we were daughters of lepers. (Pink)

Among the problems in social relationships experienced by the collaborators, they mentioned prejudice at work, which made life difficult for those affected by the stigma of leprosy, such as those reported below:

At work, I experienced a lot of prejudice. If I said I came from the special school, they would probably send me away so as not to lose the students (Red).

Everyone knew that I had lived in that special school and people were prejudiced. It was difficult from them to accept me at work at first (Orange).

Discrimination against stigmatized subjects raises prejudice, culminating in the rejection of something that is not known about what it really is ¹². Individuals marked by stigma are constantly subjected to the condemnatory meaning of the term; they are seen by society in a distorted manner, which leads them to social exclusion, as if it were guilty in being carriers of characteristics considered derogatory to society¹⁷.

The marks left on each of the collaborators transcend the scars carried by their relatives, and the consequences generated by the social and familiar displacement experienced in the past remains in their memories. These marks of stigma and prejudice still permeate the reality of today's leprosy patients due to misinformation.

Prejudice against individuals affected by leprosy is associated with the lack of knowledge of the disease-related elements, such as its mode of transmission, existence of treatment and cure. The history of stigma and prejudice and the lack of information incite fear in uninformed people, leading to social exclusion of the patient¹².

Social exclusion

Given the complexity of the aspects involving social exclusion, it is worth noting that it is conceived as a heterogeneous phenomenon, which can arise from different economic, social, cultural or pathological factors ¹⁸. The exclusion mechanisms provoked by leprosy are associated with the disabilities and physical deformities that generate prejudice. This exclusion has reinforced the segregation structure adopted through the compulsory isolation of leprosy patients, thus controlling such individuals that disturbed and haunted society¹⁴.

Social exclusion that permeated leprosy was beyond the exclusion experienced by the sick individual, and also affected their relatives. The analysis of the narratives allowed observing that the reports related to social exclusion episodes experienced by the study collaborators were frequent. The interference imposed in the way of relating to others came from the presence of a family member with leprosy.

Collaborators who were separated from their sick parents and grandparents, segregated in a reclusive life in the Oswaldo Cruz School, experienced in their daily life moments of exclusion materialized in the frustrated attempt of interacting with individuals of outside the special school to which they were sent.

I used to run away from the special school to play soccer with the kids outside. At first nobody knew I was from that school, but after they discovered it, they did not want me to play and I was soon excluded from the team. (Purple)

They advised other not to associate with us because we were from the special school and because my father had leprosy. (Blue)

The outsiders did not like us because we were the leper's children; and the boys did not want to marry us. (Green)

The segregation of the leprosy patients was explained by the fear of contagion and by all the mythical imaginary surrounding the disease and the patient, whereas the exclusion of healthy children who, in addition, lived in areas far from the sick parents, could be explained by the social contagion of the disease marks. Consequently, these children used to be excluded after revealing their origin. It was up to such individuals to hide their situation in order to establish social relations on an equal footing⁴.

The social data of collaborators show they have a low level of education, with a predominance of the complete primary education. This fact may be related to the difficulty of interacting with the healthy population, since even though participants did not have the disease, they were excluded, just like their relatives with leprosy. This exclusion was perpetuated in the school context, hampering access to education, as explained in the reports.

At the special school we finished primary school and we could not continue studying because it would have to be in a school outside, and we could not leave because we were the son of a leper. (Red)

At the special school, we could only study until the fourth grade and we could not study abroad because we were considered as the patient himself and outsiders were afraid of us. (Pink)

We were excluded and had a hard time trying to continue studying after we finished primary school. It was difficult because people had a lot of prejudice and we did not like to go outside. (Green)

Collaborators who had access to education outside the special school, because they did not live in it or because they somehow managed to get a place in an external school, reported moments of exclusion experienced in the school environment.

When I went to school they isolated me in a corner of the classroom and I was separated from those who were healthy [...] I was excluded in the classroom and they always criticized me. (White)

Often they did not want us to stay close and they would not let us play soccer with them [...] And when it was time to do work with a partner, nobody wanted to do it with me. (Orange)

Knowledge of the historical trajectory of leprosy exclusion prevails by referring to the isolation of patients in the past, leading to the fear of separation of loved ones. This fear rests on some leprosy patients, who choose not to reveal the disease and often exclude themselves from community life so as not to infect loved ones with the disease¹² . The reports obtained in the research show the choice of study collaborators to remain incarcerated for fear of exclusion and, in adopting this practice, they ended up excluding themselves from experiences and interactions with the outside world, according to the statements above.

This was a very tough life, with a lot of discrimination, so we were not aware of the outside world. We could not go by bus because people were afraid of us, so we used to walk, only. (Pink)

This principal did not want me to go to the army so that I could stay providing free service in the special school and also because I was the son of leprosy patients and this was a very heavy burden. (Blue)

I was so afraid of leaving there that I spent six years engaged until I get married and could live outside the special school. I was very afraid of the things in the world, afraid of what the people could say about us because they were both children of lepers. (Green)

We were forbidden to leave; we could not go to parties or to the beach. We could only stay in the special school and we were excluded from life outside of it. (Brown)

The mention of the term leprosy is associated with isolation and segregation suffered in the past by those who had the disease so that leprosy currently refers to the social memory of exclusion ⁶. The exclusion experienced by the leprosy patient spread and affected their relatives who, even in the face of not having the disease, received the negative impacts of their relatives. Currently, misinformation about leprosy demonstrated by the patient and the family influences the health-disease process, and it is up to both groups to engage in a mutual involvement in the treatment in order to clarify doubts about leprosy, which will provide an adequate social interaction.

Health practitioners, especially the nurse, must carry out educational activities in order to disseminate information about the epidemiological chain and treatment of leprosy, thus reducing the prejudice against those with the disease. The adoption of such measures leads to clarification of the population, favoring social integration, family life and adherence of the patient to therapeutic measures⁷.

CONCLUSION

Results of this study point to the obstacles in the social relations experienced by the relatives of ex-leprosy patients treated in the asylum environment. Dysfunction in relationships was closely linked to the presence of a person with leprosy in the family, marking their closest members who, although healthy, were victims of social exclusion, stigma and prejudice.

Difficulties in establishing cordial relations with society changed the living condition of the collaborators of this study, as presented in the thematic axes. Although there are new forms of treatment and cure, the lack of adequate knowledge about leprosy influences the social interaction of the patient and his/her relatives by carrying with them the scars of prejudice experienced by leprosy patients in the past.

Knowing the repercussions of leprosy on family life, after a family member is diagnosed, and given the social impact caused by leprosy nowadays, in relation to the patient and his/her family, entails the responsibility of health practitioners, especially nurses, to provide a comprehensive care to patients, their families and the community, in order to reduce stigma and increase adherence to treatment.

Because this is a qualitative research, with a small number of participants, the results limit comparisons and prevent generalizations. However, the relevance of this work is enhanced in that it broadens the discussion on the theme, with a view to the development of complementary studies.

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