ABSTRACT

The study aims to understand the effects of the disease on the daily lives of children and teenagers affected by leprosy. This was a qualitative research based on the theoretical framework of ‘The Sociology of Erving Goffman’. We interviewed 14 participants individually, nine children and five teenagers, who underwent treatment for leprosy and were cured. A semi-structured interview was used, covering sociodemographic information and guiding questions about the participants’ experiences with the disease, family, social aspects, and perceptions derived from the experiences. The data were analyzed by the sociology of Erving Goffman. The narratives emphasized the effects on daily life related to leprosy discovery, interaction networks, such as family and health professionals, health care, overcoming strategies and expectations. It was verified that the predominant element of the research is anchored in the fear of being discovered and discredited, in the perspective of having their identity of health resignified, by the illness, and by the evidence in view of the participant’s experience due to prejudice, anonymity, and secret. This symbolically suggests that the participants experienced a certain construction of negative social life around leprosy. The illness directly interferes with their daily life and development, especially in the participant’s social relationships.

KEYWORDS
Leprosy; Child; Adolescent; Activities of daily living; Social stigma.

Introduction

Leprosy is a chronic infectious disease caused by Mycobacterium leprae and is a serious public health problem due to its high prevalence in the North, Midwest and Northeast regions of Brazil. It can cause permanent physical disabilities and deformities that severely limit the performance of daily activities^{11 Brasil. Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de Vigilância das Doenças Transmissíveis. Guia prático sobre a hanseníase. Brasília, DF: Ministério da Saúde; 2017.}.

In addition to physical problems, affected people experience social exclusion and stigmatization. The latter is an ancient problem associated with guilt and divine punishment. Stigmatization persists for several years after the disease has been cured and is considered one of the main obstacles to diagnosis, treatment, and care by health teams in several countries^{22 Marahatta B, Amatya R, Adhikari S, et al. Perceived stigma of leprosy among community members and health care providers in lalitpur district of nepal: a qualitative study. PLOS ONE. 2018; 13(12):e0209676.}.

The diagnosis of leprosy is essentially clinical and epidemiologic and is made in Basic Health Units by dermatoneurologic examination to investigate lesions in areas of altered sensitivity or peripheral nerve involvement. At diagnosis, a strategic classification is made into multibacillary if the person has more than five lesions and paucibacillary if they have up to five lesions; a clinical classification of the disease is also made: indeterminate, tuberculoid, borderline, and Virchowian^{11 Brasil. Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de Vigilância das Doenças Transmissíveis. Guia prático sobre a hanseníase. Brasília, DF: Ministério da Saúde; 2017.}. These classifications are recognized by the Ministry of Health as one of the main difficulties in the interpretation and application of sensitivity tests for the diagnosis of the disease in children under 15 years of age. However, a complementary protocol for leprosy case investigation has been established for this age group, a PCID < 15^{11 Brasil. Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de Vigilância das Doenças Transmissíveis. Guia prático sobre a hanseníase. Brasília, DF: Ministério da Saúde; 2017.}.

Since 2000, leprosy has been eliminated as a public health problem in many countries, with a prevalence of < 1 case per 10,000 inhabitants. However, the problem persists in developing countries. While 13 countries reported between 1,000 and 10,000 new cases in 2019, India, Brazil, and Indonesia recorded more than 10,000 new cases, making Brazil the second most detected country in the world^{33 World Health Organization. Global leprosy (hansen disease) update, 2019: time to step-up prevention initiatives. 2020; 95(36):417-440.}.

In Brazil, the rate of newly detected leprosy cases in the general population in 2020 was 6.51 per 100,000 inhabitants. In the Midwest, it was 18.06; in the North, 14.52; in the Northeast, 10.21; in the Southeast, 2.04; and in the South, 1.41. All regions showed a decrease in this rate between 2001 and 2020. Among the states, Mato Grosso, with a rate of 53.54, and Tocantins, with 46.53, are considered hyperendemic. Maranhão is classified as very high with 21.99, five states as high, 16 as medium, and only 3 as low. The location of this study, the state of Pernambuco, is classified as medium with a rate of 13.47, and the municipality of Petrolina is considered hyperendemic with 44.59^{44 Brasil. Ministério da Saúde, Sala de apoio à gestão estratégica. Morbidade da hanseníase. 2021. [acesso em 2021 ago 23]. Disponível em: https://portalsage.saude.gov.br/painelManutencao/Morbidade%20-%20Hansen%C3%ADase.
https://portalsage.saude.gov.br/painelMa...} .

The high prevalence of leprosy in children under 15 years of age in the Northern, Northeastern, and Midwestern regions indicates that joint community and state efforts are needed to achieve the Department of Health’s goal of reducing the disease in the population of this age group^{55 Vieira MCA, Nery JS, Paixão ES, et al. Leprosy in children under 15 years of age in Brazil: A systematic review of the literatur. PLoS Negl Trop Dis. 2018; 12(10):e0006788.}.

The daily life of adults affected by leprosy is a topic much discussed in the literature, which generally highlights the difficulties faced by patients: impairment of emotional and sexual life, fear of the unknown, isolation, reduced ability to work, psychological problems, and low self-esteem due to prejudice against the disease, which are all problems leading to restriction of social life^{66 Santana LD, Silva SPC, Lira MOSC, et al. Significado da doença para mulheres com hanseníase. Rev Enferm UFSM. 2017; 7(1):111-122.}.

With regard to children and adolescents, the discussion is quite limited, as there are few studies that address daily life aspects and generally point to problems related to school dropout, devaluation of self-image, changes in self-esteem, effects of taking medications, fear of change, prejudice, and self-prejudice^{77 Noordende ATV, Lisam S, Ruthindartri P, et al. Leprosy perceptions and knowledge in endemic districts in India and Indonesia: differences and commonalities. PLoS Negl Trop Dis. 2021; 15(1):e0009031.}. Based on this discussion, the importance of developing studies on this special population is clear.

It’s noteworthy that disease at this stage of life is a sensitive indicator of the epidemiological situation of leprosy, because the sources of infection are usually the adult family members, which means that they do not receive a diagnosis early or timely treatment. In this way, children come into close and prolonged contact with patients and become infected at a young age, showing the hyperendemia of the disease^{88 Pedrosa VL, Dias LC, Galban E, et al. Leprosy among schoolchildren in the amazon region: a cross-sectional study of active search and possible source of infection by contact tracing. PLoS Negl Trop Dis. 2018; 12(2):e0006261.,99 Santos KCB, Corrêa RGCF, Rolim ILTP, et al. Estratégias de controle e vigilância de contatos de hanseníase: revisão integrativa. Saúde debate. 2019; 43(121):576-591.}.

In this sense, the study proposed to shed light on the daily lives of children and adolescents who’ve experienced the disease, and their social relationships and tensions associated with living with leprosy, taking into account their experiences and characteristics from diagnosis through the course of the disease to treatment and cure.

With this in mind, this study asks the following guiding question: what is the impact of leprosy on the daily lives of affected children and adolescents? Considering that children and adolescents are more vulnerable than the adult population, this study aims to investigate the impact of leprosy on the daily lives of affected children and adolescents.

Material and methods

This research had a qualitative approach, using the ‘Erving Goffman’s Sociology’ as a theoretical framework, especially with regard to stigma and the representation of the self in daily life, which are important contributions to understanding the process of health and disease^{1010 Koury MGP. Sobre Erving Goffman e a análise do fracasso em The Presentation of Self in Everyday Life. Dilemas, Rev Estud Conflito Controle Soc. 2019; 12(3):525-540.}. In particular, in this study, we used some concepts developed by Goffman in his work on stigma, such as virtual social identity, real social identity, discredited, and discreditable, to interpret the impact on the daily lives of children and adolescents who experience a disease process through leprosy^{1111 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Editora Guanabara; 1988.}.

This article is part of the doctoral thesis in public health entitled ‘Leprosy among adolescents in Brazil: from epidemiological panorama to impact on daily life’ defended at the Instituto de Saúde Coletiva of the Federal University of Bahia (ISC/UFBA).

Nine children and 5 adolescents participated in this study, for a total of 14 participants. The respondents were young people affected by the disease, who were purposely selected and met the following inclusion criteria: cured people of both sexes, residing in the São Francisco Valley region, aged between 11 and 18 years, registered in the Leprosy Control Program. Exclusion criteria were: a disability that prevented participation in the survey and no permission from the legal representative to participate in the study.

Recruitment was conducted through the municipality’s Infectious Disease Service, which asked family members about their interest in participating in the study. At the time of the survey, participants were cured and had permission from their legal representative in accordance with CNS Resolution No. 510/2016 (free and informed consent).

Data collection took place between July 22, 2016 and January 15, 2017. A semi-structured interview technique was used, guided by a script with themes aimed at generating narratives about aspects of daily life before, during, and after leprosy: 1) What was daily life like before leprosy; 2) What was daily life like during the disease; 3) What changed in life after diagnosis; and 4) What is life like currently.

The meetings were held at a time and place convenient to those in charge of the minors. Permission was requested to record the interview, which lasted an average of one hour and thirty minutes, and two meetings per participant were required for data collection.

Interpreting research data using narratives considers the way in which personal experiences are collected and analyzed, emphasizing the specificity of the signs of each lived experience and detaching them from theoretical generalizations^{1212 Squire C. O que é narrativa? Civitas - Rev. Ciênc. Soc. 2014; 14(2):272-284.}. Thus, in addition to seeking possible connections among the stories surrounding leprosy, narratives were also important in highlighting particularities, ruptures, and discontinuities in these stories.

The project was approved by the Research Ethics Committee (CEDEP) of the Federal University of Vale do São Francisco (UNIVASF) with the opinion n. 1.448.193. To ensure anonymity, participants were identified with names that represent the flowers of the Caatinga.

Results and discussion

Of the 14 participants, 8 were female and 6 were male; they were between 8 and 14 years old during the illness and between 11 and 17 years old at the time of the interview. All attended public schools, mainly elementary school. Nine of them lived with their mother, father, and siblings, and the others lived with their grandparents, uncles, and cousins. Most of them received up to 1 minimum wage. Regarding the operational classification of leprosy, 10 had the multibacillary form and 4 had the paucibacillary form.

Next, the themes that emerged from a thorough reading of each narrative are presented, namely: the discovery of the disease, becoming aware of it; the daily life of the sick family: going through dark times; the impact of leprosy on sociability; strategies for coping and self-preservation; and expectations.

Discovery of the disease, becoming conscious

It is clear that the diagnosis of leprosy had a negative impact on the lives of children and adolescents, especially on the way the families of the participants dealt with the situation. This context is present in the disease process and causes suffering related to the fear of the unknown. It also causes fear of having to quickly learn about the disease and treatment, as well as the parents’ fear of prejudice and possible negative effects on the family’s daily life^{1313 Zhou T, Wang Y, Yi C. Affiliate stigma and depression in caregivers of children with autism spectrum disorders in China: effects of self-esteem, shame and family functioning. Psyc. research. 2018; (264):260-265.,1414 Tekola B, Kinfe M, Girma F, et al. Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: a qualitative study. Social science & medicine. 2020; (256):1-9.}.

Related to this is the representativeness of what leprosy causes in the nuclear family, as the family confronted with the new reality of living with a child with leprosy has negative experiences of the enormous burden of exclusion, disfigurement, and the potential consequences of the disease.

A study of caregivers of HIV-infected children has shown that family support is critical during the course of the disease, and isolation serves as a coping strategy in the face of prejudice and to avoid embarrassing situations^{1515 Biru M, Lunqvist P, Molla M, et al. Hope for the future but fear the risk of stigma: ethiopian family caregivers’ lived experience of caring for their HIV positive child two years after starting antiretroviral treatment. Compreh. Child and Adol. Nursing. 2018; 41(4):293-309.}. The similarity to leprosy is obvious, as both are diseases that are subject to much prejudice, the experience of which negatively affects the lives of those who receive the diagnosis and is associated with stigma and fear^{1616 Coutinho MFC, ÓDwyer G, Frossard V. Tratamento antirretroviral: adesão e a influência da depressão em usuários com HIV/Aids atendidos na atenção primária. Saúde debate. 2018; 42(116):148-161.}. Stigma occurs when the stereotype doesn’t match the perception of a particular person, through the devaluation of identity, and is closely linked to acceptance when peers don’t view the ill person as an equal and don’t respect or consider them normal^{1111 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Editora Guanabara; 1988.}:

The discovery of the disease has yet to be addressed by researchers in the field to find strategies to raise awareness, qualify and support professionals to understand the family context and what it means to receive the diagnosis. Often the family is faced with the desire to disclose the diagnosis, but at the same time they take steps to prevent the disease from being discovered.

The importance of professionals who are sensitive to the specificities of childhood illness, who welcome and support the family^{1717 Oliveira JDCP, Marinus MWLC, Monteiro EMLM. Práticas na atenção à saúde da criança e do adolescente com hanseníase: o discurso de profissionais. Rev Gaúcha Enferm. 2020; (41):e20190412.}, who reflect on their practice and propose specific interventions to improve the quality of life of the ill and their family members, is emphasized. It is known that the fear of stigmatization of leprosy can lead to the delay of diagnosis and that a supportive professional practice has a direct impact on the acceptance of the disease and the reduction of late diagnosis^{1818 Silva LOL, Rodrigues SM, Brandão MBF, et al. Representações sociais do processo de diagnóstico e cura da hanseníase. Rev. Psicol. Saúde. 2020; 12(2):73-87.}.

According to the participants’ narratives, the moment when the family receives the news of the leprosy diagnosis is one of the moments when they most need help and support, as well as information and advice to reduce fear and expectations about the course of the disease, as the disease is still stigmatized in society.

The daily life of the sick family: going through dark times

Having a child with leprosy in the family affects the balance of those involved and can cause the members to form a kind of enchanted circle. The dynamics of the circle are established through silence and agreements to hide or deny the illness as a strategy to protect the ill family member from traumatic situations^{1919 Neiva RJ, Grisotti M. Representações do estigma da hanseníase nas mulheres do vale do Jequitinhonha-MG. Physis: Rev. Saúde Colet. 2019; 29(1):e290109.}. The lived experiences were similar depending on the manifestation of the disease.

More than one family member can be diagnosed with leprosy, and when this is the case, those stigmatized tend to have similar experiences regarding their disease and experience similar changes in their self-image^{1111 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Editora Guanabara; 1988.}. When the experience is shared within the family or their social circle, the suffering and fear of the unknown are shared again, and the ill family member needs the support of the family to cope with any setback during the disease process^{2020 Marinho FD, Avellar LZ, Souza LGS, et al. Hanseníase: sentidos e facetas do convívio para adolescentes com a doença e seus familiares. Cad Bras Ter Ocup. 2018; 26(4):837-848.}.

On the other hand, the participants of this study understand the importance of the enchanted circle as support and preservation in the family, since the main support of this strategy comes from the mother. At this moment, they realize that their role in the family reassures and balances the experiences.

The experience takes on a different meaning depending on the type of relationship, because if the illness affects the children, they become the protected ones, and if it affects the partner, they can become a problem or a burden to take care of.

Even if this enclosure is understood as a form of protection, some families showed increased suffering as a result of this closure. Sometimes it seemed as if the enclosure was the result of intense suffering, sometimes as if this enclosure increased the suffering. Deliberate disclosure to peers is guided by the place or importance people hold in these relationships, and deciding to whom to disclose was one of the most important issues for participants and family members. In this sense, disclosure that occurs through the presence of embodied signs of stigma tends to be a bad experience for them.

To disclose the condition of the child or adolescent diagnosed with a stigmatizing disease, the abominations of the body, as one of the three types of stigma - abominations of the body, individual and tribal guilt, and stigma of race, nation and religion - is to deprive him or her of his encapsulation and thus bring about a deprotection^{1111 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Editora Guanabara; 1988.}.

Encapsulation crystallizes as a way of coping with the disease process, which proves to be a strategy for coping and maintaining the interlocutors. Some agreements were made, and the most important of them was to hide the sick condition. This form was expressed in covering the spot with clothes, hiding the affected member, and monitoring by the family.

The repercussions of leprosy on sociability

One of the effects that participants experienced most was in the school context. Leprosy had to be kept secret because participants were aware that they could be bullied if they were discovered, because if their classmates were healthy, they needed to withdraw and isolate themselves to protect them.

In addition, the unpreparedness of the teachers who accompanied the study participants on a daily basis is evident, as the classroom was divided into two groups, one with students with leprosy and one with healthy students. This shows the lack of concern with inclusion and social inequality, and the reinforcement of stigma.

The school environment, which is the main means of social interaction for both children and adolescents, was crucial for self-acceptance and acceptance among peers. It can be seen that this behavior was not based on the correct understanding of the disease, as there was no knowledge of the process/timing of transmission, resulting in a wrong and stigmatizing action. From this perspective, it is clear how much the children and adolescents envision change by making explicit the suffering and the memory of how the disease negatively changed their daily lives.

The disaffection from peers becomes a moment of disbelieve, and if the stigma symbols are not known or immediately noticeable to those present, the affected person is self-perceived as inferior compared to others^{2121 Levantezi M, Shimizu HE, Garrafa V. Princípio da não discriminação e não estigmatização: reflexões sobre hanseníase. Rev bioét. 2020; 28(1):17-23.}. This perception raises fears that disclosure of the disease would affect their social interactions and jeopardize their relationships in their social groups, especially in the school environment^{1111 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Editora Guanabara; 1988.}.

Identity is affirmed or repressed in the social context, and in this exchange, it is continually constructed and reconstructed. The balance of power between the individual and the social environment takes place in this context, asserting one’s identity against the heteroidentity of negative stigmatization by others^{2222 Costalat-Founeau A-M, Gosset A. Dynamique identitaire et projet. Revista de Psicología. 2018; 36(1):367-382.}. As highlighted in Goffman’s model, real social identity, when discovered, can be compromised and the alienated person is discredited by his or her peers because adolescents do not have the maturity or skills to strategically define their virtual social identity according to material or symbolic interests as adults do.

Real social identity is understood as the category of properties that the individual can actually be shown to possess. Virtual social identity, on the other hand, refers to a characterization we ascribe to a person based on the traits he or she portrays, which may not correspond to reality because it is usually anchored in expected social norms^{1111 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Editora Guanabara; 1988.}.

Even though the disease causes so much suffering, there is a clear desire to hide it because if it is revealed, social interaction will be affected. Deliberate disclosure to peers depends on people’s place or importance in those relationships, and deciding to whom to disclose is one of the most important issues for children and adolescents, as well as their families. In this sense, disclosure that occurs through the presence of embodied signs of stigma tends to be a bad experience for those involved in the process of leprosy.

Strategies for coping, self-preservation and expectations

In the daily lives of the respondents, there were barriers and conflicts that made health care difficult. Participants’ narratives indicated that there were difficulties in diagnosis that delayed the process of being admitted as a leprosy patient. Participants experienced prejudice not only in the school environment, but also in leprosy treatment by health workers who were supposed to support and care for them.

Comprehensive care for children and adolescents is officially guaranteed as a public health policy in Brazil^{2323 Brasil. Ministério da Saúde, Lei nº 8.069, de 13 de julho de 1990. Estatuto da criança e do adolescente. Brasília, DF: Ministério da Saúde; 2019.}. It must take into account and respect the circumstances of children and adolescents, go beyond physical care, and address social and emotional needs.

Professionals caring for young people with leprosy are responsible for diagnosis, treatment, cure, and health education. However, many of them are not qualified or sensitized, which affects the quality of care; their educational practices are carried out in a one-way and impersonal relationship, in which knowledge passes through the sieve and the selection of the person who passes it on, without taking into account the experiences of those affected and without contributing to critical thinking that can help change perceptions of the disease and of the young person with the disease^{2424 White C. Iatrogenic stigma in outpatient treatment for hansen’s disease (leprosy) in Brazil. Health Educ Res. 2008; 23(1):25-39.}.

Similarly, this framework occurs within the household itself in which parents separate their personal belongings to limit transmission to other family members. This attitude is justified by the well-being of all family members and leads to a situation of exclusion at home.

In addition, there were complaints that indicated suffering. The constant taking of medicines was the most obvious complaint, understood as a responsibility that did not fit the age. As a strategy to get rid of this obligation, the medicines were hidden at home, without hesitation.

The drugs were perceived as a burden in the disease because they were tangible and real, reminding them daily of their condition and making them partly responsible for their health. In addition, the amount and reactions of the medication caused suffering. They perceived that following a treatment on a daily basis is not for young people, and taking on this type of responsibility was perceived as a burden. The narratives indicate that there was no preparation, awareness, or education about what would happen.

In addition to the reported anxiety, the research indicates that the consequences of taking medication were related to taking on a responsibility or routine that was not compatible with the age, and to the side effects of the treatment, especially the hyperpigmentation of the skin that denounced their condition^{2525 Sardana K, Khurana A. Leprosy stigma & the relevance of emergent therapeutic options. Indian J Med Res. 2020; 151(1):1-5:32134008.}.

Being the protagonist of their own story and having an embodied marker in a life context with a culture of stigmatization puts the child or adolescent at a disadvantage and a limited view of their future prospects, in which their expectations are centered on the recovered image, healthy body and daily life.

Ultimately, a child or adolescent with leprosy can be compared to an iceberg. What is visible is his disease, the external visualization of a person with leprosy, a brief and superficial concept that reduces the subject to his disease. However, if the consciousness of knowledge embraces the larger part of the iceberg, then one can understand that its complexity goes beyond a simple tip. In this context, a patient must be considered as a being far beyond what is attributed to him.

Final considerations

The results of this study show that the experience of leprosy in children and adolescents is a phenomenon that is difficult to understand and that the disease goes beyond diagnosis and treatment. This phenomenon tends to reflect on important aspects of this process that involve the family, peers, and professionals.

The fear of having a stigmatizing disease generates suffering and expectations arising from the unknown, and narratives show that children and adolescents’ routines and habits have changed completely, depriving them of important daily activities. The fact that the children and adolescents have to stay at home because they should not be exposed to the sun due to the negative effects of the medication on skin pigmentation, as well as the exclusion by peers and the family encapsulation were the main features of this discontinuity in the social and play life of these young individuals.

The revelation of the condition in everyday life, with effects on the social development of those affected, leaves physical and non-physical traces that can last into adulthood. As the disease progresses, participants choose to remain silent about their leprosy condition in order to protect their identity and maintain social acceptance. Revealing the true condition of leprosy makes the individual vulnerable to the consequences of being against the hegemonic, of being different from his peers, and of being contrary to what is considered healthy.

From this point of view, the empowerment of children and adolescents in the study and the sensitization of professionals, including psychological and social aspects, are necessary to change the treatment model and the approach to this group and not to consider them only as sick. This can be done through the modification and implementation of health interventions that can change the current reality, such as strengthening support groups for families affected by the diagnosis and professional qualification in child and adolescent care.

At the time of writing, knowledge about the problems and coping strategies of children and adolescents with leprosy was limited, as there are few scientific publications on this topic. Nevertheless, the results presented here are important because they show how the disease negatively affects daily life and what coping strategies participants use in the disease process.

The development of research on the daily life of children and adolescents affected by leprosy, on coping strategies such as family perceptions of this process, including gender aspects, and on how medication is presented to this group is considered relevant.

References

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