Abstract

The process of stigmatization associated with TB has been undervalued in national research as this social aspect is important in the control of the disease, especially in marginalized populations. This paper introduces the stages of the process of cultural adaptation in Brazil of the Tuberculosis-related stigma scale for TB patients. It is a methodological study in which the items of the scale were translated and back-translated with semantic validation with 15 individuals of the target population. After translation, the reconciled back-translated version was compared with the original version by the project coordinator in Southern Thailand, who approved the final version in Brazilian Portuguese. The results of the semantic validation conducted with TB patients enable the identification that, in general, the scale was well accepted and easily understood by the participants.

Validation studies; Social stigma; Translations; Tuberculosis

Introduction

The stigma associated with tuberculosis (TB) is a social phenomenon present in several cultures and communities¹1. Baral SC, Deepak KK, Newell JN. Causes of stigma and discrimination associated with tuberculosis in Nepal: a qualitative study. BMC Public Health 2007; 7:211.. Historically, the moral change after the identification of its pathogen by Robert Koch, as well as the confirmation of its transmissivity, contributed to evidence certain social categories as the only ones to be affected by the disease²2. Pôrto A. Representações sociais da tuberculose: estigma e preconceito. Rev Saude Publica 2007; 41(Supl.1):43-49..

This is due to the fact that the spread of TB was more prevalent among the poor due to their precarious life conditions in large industrial cities in the late nineteenth and early twentieth centuries, conditions which contributed to infection and development of the disease. According to the author³3. Silva ACA. Dores do corpo e dores da alma: o estigma da tuberculose entre homens e mulheres acometidos [tese]. Campinas: Universidade Estadual de Campinas; 2009. this fact led to changes in the speeches of spokespersons regarding the social image of TB, and as a result, the stigma of contagion was developed.

In the current epidemiological reality of TB in Brazil and worldwide, reports on the impact of stigma both in the search for a diagnosis and adherence to treatment was seen in Asian and African countries⁴4. Sengupta S, Pungrassami P, Balthip Q, Strauss R, Kasetjaroen Y, Chongsuvivatwong V, Van Rie A. Social impact of tuberculosis in southern Thailand: views from patients, care providers and the community. Int J Tuberc Lung Dis 2006; 10(9):1008-1012.^,55. Dodor EA, Kelly S, Neal K. Health professionals as stigmatisers of tuberculosis: insights from community members and patients with TB in an urban district in Ghana. Psychol Health Med 2009; 14(3):301-310., the Americas⁶6. Macq J, Solis A, Martinez G, Dujardin B. An exploration of the social stigma of tuberculosis in five “municipios” of Nicaragua to reflect on local interventions. Health Policy 2005; 74(2):205-217.^,77. Coreil J, Mayard G, Simpson KM, Lauzardo M, Zhu Y, Weiss M. Structural forces and the production of TB-related Stigma among Haitians in two contexts. Soc Sci Med 2010; 71(8):1409-1417. and Europe⁸8. Dimitrova B, Balabanova D, Atuan R, Drobniewski F, Levicheva V, Coker R. Health service providers’ perceptions of barriers to tuberculosis care in Russia. Health Policy Plan 2006; 21(4):265-274..Extended, substantial investigations on this phenomenon are very important.

According to Goffman⁹9. Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4ª ed. Rio de Janeiro: Jorge Zahar; 1982. the process of stigmatization occurs because of the contradictory relation between the attributes and stereotypes that the normal population creates for a given set of people. Such a relation generates inferior identities and may vary according to the evidence and exposure of the characteristics of the individual. In turn, the psychosocial aspect emphasizes the contextual and dynamic nature of stigma and its immediate effects in the perspective of stigmatizer, stigmatized, and the interaction between them¹⁰10. Corrigan PW, Watson AC. The paradox of self-stigma and mental illness. Clinical Psychology-Science and Practice 2002; 9(1):35-53..

Therefore, beyond the biologicist perspective, the experience with the stigma of TB presents different results according to historical, cultural, and social aspects. In general, the reasons for such stigmatizing attitudes are divided into three categories: lack of knowledge and/or myths about the disease; association of TB with other health conditions, such as AIDS; poverty and marginalizing behaviors¹¹11. Courtwright A, Turner AN. Tuberculosis and Stigmatization: Pathways and Interventions. Public Health Reports 2010; 125(Supl. 4):34-42..

In different geographical regions, authors have been trying to understand the prevalence and extent of the stigma in the community through the use of standardized assessment tools¹²12. Macq J, Solis A, Martinez G. Assessing the stigma of tuberculosis. Psychol Health Med 2006; 11(3):346-352.

13. Weiss MG, Somma D, Karim F, Abouihia A, Auer C, Kemp J, Jawahar MS. Cultural epidemiology of TB with reference to gender in Bangladesh, India and Malawi. Int J Tuberc Lung Dis 2008; 12(7):837-847.^-1414. Van Rie A, Sengupta S, Pungrassami P, Balthip Q, Choonuan S, Kasetjaroen Y, Strauss RP, Chongsuvivatwong V. Measuring stigma associated with tuberculosis and HIV/AIDS in southern Thailand: exploratory and confirmatory factor analyses of two new scales. Trop Med Int Health 2008; 13(1):21-30.. However, cultural adaptation and validation between the different versions of these instruments are required so that the TB stigma assessment actions and the analysis of determining factors provided by scales developed in other countries with their sociocultural differences are relevant in the Brazilian environment.

No specific scale that has been adapted for use in the country was identified in the national literature to assess stigma in TB patients. Thus, the present work aims at culturally adapting the Tuberculosis-related stigma scale for use in Brazil.

Method

This study is a methodological investigation consisting of the process of translation and semantic validation of the items of the Tuberculosis-related stigma scale developed and validated in Southern Thailand. The scale consists of 23 items and the total score ranges from 0 to 27.9. Higher score indicates higher level of stigma. Two subscales enable the assessment of stigma associated with TB in specific domains: (1) the perspectives of the community in relation to TB; (2) the perspectives of patients in relation to TB¹⁴14. Van Rie A, Sengupta S, Pungrassami P, Balthip Q, Choonuan S, Kasetjaroen Y, Strauss RP, Chongsuvivatwong V. Measuring stigma associated with tuberculosis and HIV/AIDS in southern Thailand: exploratory and confirmatory factor analyses of two new scales. Trop Med Int Health 2008; 13(1):21-30..

Contact with the project coordinator in Southern Thailand was initially established, and an authorization to translate and culturally adapt the process to the Brazilian context was requested. The items were subsequently translated and semantically validated through the procedures indicated by Beaton et al.¹⁵15. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self report measures. Spine 2000; 25(24):3186-3191. and the Group DISABKIDS®¹⁶16. Disabkids Group. Disabkids translation and validation procedure. Guidelines and documentation form. Hamburgo: The Disabkids Group Europe; 2004. (Figure 1), respectively.

The scale was translated independently by two translators one fluent in the source language and the other a native speaker of the target language. The first one was familiar with the assessed construct, while the other was not aware of the objectives of the translation. With these two translated versions, synthesis was initiated by discussion with both the research group and the researchers responsible for the original scale. The back-translation to the original language was then performed by two native speakers of the target language who were not aware of the theme. The consensus version in English was subsequently compared with the original version of the scale and approved by the project coordinator in Southern Thailand.

Semantic validation of the scale was performed with patients undergoing TB treatment in the city of Ribeirão Preto. Located in the Northeastern region of the state of São Paulo, 313 kilometers from the state capital and 706 kilometers from Brasília, Ribeirão Preto has an estimated population of 658,059 inhabitants in a territory of 650.92 km²¹⁸. According to the Human Development Index (HDI) of 0.80, literacy rate of 3.0, and the São Paulo Social Vulnerability Index (IPVS), the city is in the group of those presenting good social and economic indicators¹⁸18. Instituto Brasileiro de Geografia e Estatística (IBGE). Mapa do Brasil – Grandes Regiões. Rio de Janeiro. 2014. [acessado 2013 jul 12]. Disponível em: http://7a12.ibge.gov.br/images/7a12/mapas/Brasil/brasil_grandes_regioes.pdf
http://7a12.ibge.gov.br/images/7a12/mapa... ^,1919. Fundação Sistema Estadual de Análise de Dados. Secretaria de Planejamento e Desenvolvimento Regional. Índice Paulista de Vulnerabilidade Social (IPVS). 2010. [acessado 2013 nov 10]. Disponível em: http://www.iprsipvs.seade.gov.br/view/index.php.
http://www.iprsipvs.seade.gov.br/view/in... .

In the city the care for TB patients is centralized in the reference clinics with TB Control Programs (TCP) distributed in five Health Districts (east, west, north, south, and central). These services work with specialized teams consisting of a minimum of one physician, two nursing assistants, and one nurse performing activities related to diagnosis, clinical management of cases and their contacts, medical visits, and coverage of the Directly Observed Treatment (DOT). In relation to the epidemiological situation of TB, in 2013 the incidence was of 28.17 cases per 100,000 inhabitants and 18% of TB/HIV co-infection. Regarding the outcomes of the treatment, in 2012 a cure rate of 77.8% was verified, 6.6% of abandonment of treatment, and 3.6% of death rate²⁰20. TB-WEB. Sistema de Notificação e Acompanhamento dos Casos de Tuberculose. [acessado 2013 nov 10]. Disponível em: http://www.cvetb.saude.sp.gov.br/tbweb/index.jsp
http://www.cvetb.saude.sp.gov.br/tbweb/i... .

The population of the study consisted of TB patients aged over 18 years, living in the city of Ribeirão Preto, and undergoing treatment in the reference clinics for a minimum period of two weeks. Patients that did not present the minimum skills to understand the questions of the scale and those who did not feel comfortable to talk about the objectives of the investigation in the presence of the researchers were excluded.

Convenience sampling with patients undergoing TB treatment in the reference clinics of the western and northern regions of the city between September and December 2014 was performed for the semantic validation. The choice of these health services is justified as they are located in two areas that have a concentration of new cases of TB and coincide with the areas of concentration of poverty and intermediate living conditions²¹21. Hino P, Villa TCS, Cunha TN, Santos CB. Padrões espaciais da tuberculose e sua associação à condição de vida no município de Ribeirão Preto. Cien Saude Colet 2011; 16(12):4795-4802.. The number of participants in this stage was established according to the method DISABKIDS, validated in six European countries and Brazil¹⁶16. Disabkids Group. Disabkids translation and validation procedure. Guidelines and documentation form. Hamburgo: The Disabkids Group Europe; 2004.^,2222. Deon KC, Santos DMSS, Reis RA, Fegadolli C, Bullinger M, Santos CB. Tradução e adaptação cultural para o Brasil do DISABKIDS® Atopic Dermatitis Module (ADM). Rev Esc Enferm USP 2011; 45(2):450-457..

Two groups were formed considering the selected reference clinics. With the 23 items that make up the scale three subgroups were formed: (A) consisting of items 1 to 7 of the first dimension; (B) consisting of items 8 to 11 of the first dimension and 1 to 4 of the second dimension; (C) consisting of items 5 to 12 of the second dimension. Three patients were considered for each subgroup:

Selection of participants was performed through an initial contact with the teams in the reference clinics of western and northern districts, introduction of the research objectives, and non-participant observation of the care provided in the service, and follow-up of DOT at home.

From this local recognition the individuals eligible for the study were identified, verbal and written information on the research was provided, and the invitation to participate was made. In the event of adherence by patients, the free and informed consent form was read and signed in two copies by them.

Then the patients were requested to complete the Tuberculosis-related stigma scale and the general impressions form. Subsequently the participants of each subgroup answered the questions of the specific form. In addition to the quantitative data, the researcher also registered in her field notes the qualitative impressions of the individuals of the study on their understanding of the items of the scale and the experience of the stigma associated with TB. Clinical information on the condition of patients were obtained from medical records and charts available in the clinics.

Data were analyzed in the software STATISTICA version 12.0. Descriptive analyses were conducted in all variables. Measures of dispersion (deviation-standard – SD, minimum and maximum values), central tendency (mean and median) were calculated for continuous variables. Measures of absolute and relative frequencies were calculated for categorical variables.

The study was approved by the Ethics Committee of the School of Nursing of Ribeirão Preto of the University of São Paulo.

Results

Of the total of 26 patients undergoing treatment in the two reference clinics, 17 participated in the study. There was no refusal and one patient died. According to the reference clinics for TB diagnosis and treatment, the distribution of sociodemographic and clinical variables suggests a prevalence of male patients affected by the disease, in economically productive groups, with years of education ranging between six and nine, and presenting average family income below two minimum wages per month.

In relation to the clinical variables, it was observed that two individuals were seropositive for HIV and that there are, respectively in the western and northern districts clinics, 5 (62,5%) and 6 (66,7%) individuals with the pulmonary clinical form, most of these consisting in new cases with no previous treatment (Table 1).

The general impressions of the scale are presented in Table 2. It is possible to observe that, in general, the scale was well accepted and easily understood by most participants. It was also verified that 12 (70.6%) interviewees considered it as good, while 16 (94.1%) considered the items as very important for the assessment of the stigma associated with TB and was easy to understand.

In the specific analysis form of the Tuberculosis-related stigma scale the items were fully understood, except for item 1 Some people prefer not to have someone with TB living in their community, item 3 Some people think people with TB are disgusting, item 5 Some people with TB lose friends when they share the information that they have the disease, and item 8 Some people with TB will choose carefully those to share the information about the disease, which were not understood by 16.7% of the individuals. However, no changes in items were suggested. Item 2 some people keep distance from TB patients was not found relevant for 33.4% of the individuals (Tables 3 and 4).

In relation to the reformulation of items, five individuals suggested changes to colloquial terms. After some discussion the researchers agreed with the suggestions of the participants, resulting in the version adapted for Brazil. In the analysis of registered qualitative impressions, the stigma associated with TB was represented in the following reports:

... The unknown is always feared [...] especially in the early stage of the disease. (E3)

... I see that such behavior is influenced by the lack of knowledge on TB in the community. (E3)

... Even today, it annoys me to know that I have lost friends because of this disease [...] it is not easy, you know. (E5)

... I was really afraid, just like my family, to tell friends and neighbors that I had the disease. (E5)

... Yes, I believe this disease still faces a certain level of discrimination and prejudice. (E10)

... In fact, this occurs and it outrages me [...] I see respect to each other, especially when the person is sick. (E2)

Discussion

This paper aimed at introducing the stages of the process of cultural adaptation of the Tuberculosis-related stigma scale for TB patients in Brazil. To this end, the guidelines suggested in national and international literature were followed¹⁵15. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self report measures. Spine 2000; 25(24):3186-3191.^,2323. Gudmundsson E. Guidelines for traslating and adapting psychological instruments. Nordic Psychology 2009; 61(2):29-45.^,2424. Cassep-Borges V, Balbinotti MAA, Teodoro MLM. Tradução e validação de conteúdo: uma proposta para a adaptação de instrumentos. In: Pasquali L, organizador. Instrumentação psicológica. Fundamentos e práticas. Porto Alegre: Artmed; 2010. p. 506-520..

According to authors²⁴24. Cassep-Borges V, Balbinotti MAA, Teodoro MLM. Tradução e validação de conteúdo: uma proposta para a adaptação de instrumentos. In: Pasquali L, organizador. Instrumentação psicológica. Fundamentos e práticas. Porto Alegre: Artmed; 2010. p. 506-520., some instruments are developed considering only a given culture, while others are developed to be culturally adapted. The translation of the scale from the source language to the target language required a series of careful steps in order to minimize the linguistic, cultural, theoretical, and practical biases in the Brazilian context.

In this process the formal expressions were replaced by others that can be easily understood, such as the term “insulted” by “hurt”. Another criterion discussed by researchers and translators refers to replacing the verb “to have” by “to be”, considering the transient nature of the disease through the proper treatment and achievement of cure, as well as the connotation used in the Brazilian culture.

Pedroso et al.²⁵25. Pedroso RS, Oliveira M, Araujo RB, Morais JFD. Tradução, equivalência semântica e adaptação cultural do Marijuana Expectancy Questionnaire (MEQ). Psico-USF 2004; 9(2):129-136. suggest that the most significant problem caused by the use of an inappropriate method of translation and cultural adaptation consists in a misrepresented measurement of what is intended to be calculated. Therefore, submitting the reconciled back-translation of the scale to the project coordinator in Southern Thailand and her approval for the final version in Brazilian Portuguese contributed to the semantic equivalence of the versions.

However, due to the possibility of failures and limitations, the translation of the scale alone is not a procedure that ensures its applicability. The methodological strictness of the cultural adaptation does not exclude the need to verify the understanding of the items by the target-audience through the scale face, semantic, and conceptual validation. If an item remains incomprehensible or behaves in a different way than expected by the researchers, it must be reviewed and adapted²⁴24. Cassep-Borges V, Balbinotti MAA, Teodoro MLM. Tradução e validação de conteúdo: uma proposta para a adaptação de instrumentos. In: Pasquali L, organizador. Instrumentação psicológica. Fundamentos e práticas. Porto Alegre: Artmed; 2010. p. 506-520..

Descriptive analyses of the semantic validation evidenced the understanding and acceptance of the items resulting from the translation process. A total of 94.1% of the interviewed patients considered the items as very important in the assessment of stigma associated with TB, they were easy to understand, with appropriate categories of answers that were easily answerable.

During the interviews, the expressions of stigmatizing behaviors and attitudes described in the items included the elements of the construct with varied levels of difficulty. The replacement of colloquial terms suggested by individuals with low educational level is pointed out by Pasquali²⁶26. Pasquali L. Instrumentos psicológicos: manual prático de elaboração. Brasília: LabPAM/IBAPP; 1999. as a strength, because if these group of individuals understands the item, it is expected that the group with higher levels of education will also understand it.

It was observed that some individuals presented a certain level of difficulty in understanding four of the items of the scale, requiring more time to answer the questionnaires. The difficulty in understanding such items may be associated with the levels of stigma and its impact on the social relations and self-esteem of these individuals. According to authors²⁷27. Corrigan PW, Wassel A. Understanding and influencing the stigma of mental illness. J Psychosoc Nurs Ment Health Serv 2008; 46(1):42-48.^,2828. Felicissimo FB, Ferreira GCL, Soares RG, Silveira PS, Ronzani TM. Estigma internalizado e autoestima: uma revisão sistemática da literatura. Revista Psicologia: Teoria e Prática 2013; 15(1):116-129., the process may occur more subtly for some people, because being labeled as belonging to a given stigmatized condition leads to expectations of discrimination and devaluation.

Therefore, besides facing the negative experiences resulting from the symptoms of their own health condition, TB patients often have to deal with negative attitudes and behaviors by society. According to Corrigan and Watson¹⁰10. Corrigan PW, Watson AC. The paradox of self-stigma and mental illness. Clinical Psychology-Science and Practice 2002; 9(1):35-53., this subjective process occurs when members of a stigmatized group accept the prejudice associated with their condition and apply these negative attitudes and beliefs to themselves, affecting their quality of life.

The individual tends to anticipate the rejection, devaluation, and discrimination from other people and begins to develop strategies to prevent these experiences, avoiding social interactions and hiding their health condition and treatment history²⁹29. Mueller B, Nordt C, Lauber C, Rueesch P, Meyer PC, Roessler W. Social support modifies perceived stigmatization in the first year of mental illness: A longitudinal approach. Social Science & Medicine 2006, 62(1):39-49.. Informal reports on low levels of satisfaction in relation to important spheres of life, including work, family, and relationships with friends were presented during the interviews with patients that were undergoing TB treatment for less than a month. Equivalence between experiences of stigma reported by patients undergoing TB treatment in Southern Thailand⁴4. Sengupta S, Pungrassami P, Balthip Q, Strauss R, Kasetjaroen Y, Chongsuvivatwong V, Van Rie A. Social impact of tuberculosis in southern Thailand: views from patients, care providers and the community. Int J Tuberc Lung Dis 2006; 10(9):1008-1012. and patients in Brazil was observed.

Although the use of scales represents a challenge in the assessment of the social stigma of TB, it is possible to explain why this factor represents a predictor of delay of diagnosis and non-adherence to treatment in certain contexts and not in others. These scales consist of tools for the assessment and channeling of resources to strengthen social support networks that include intersectoral actions of TB treatment in the health services¹¹11. Courtwright A, Turner AN. Tuberculosis and Stigmatization: Pathways and Interventions. Public Health Reports 2010; 125(Supl. 4):34-42..

There is evidence that a good social support may represent a protective factor and that a poor social network may contribute to the vulnerability and internalization of stigmatizing attitudes³⁰30. Ferreira GCL, Silveira PS, Noto AR, Ronzani TM. Implicações da relação entre estigma internalizado e suporte social para a saúde: uma revisão sistemática da literatura. Estudo de Psicologia 2014; 19(1):77-86.. It is observed that the intersectoral action in health services involves the creation of spaces for communication and overcoming of conflicts leading to accumulation of strengths, creation of individuality, and the discovery of the possible course of actions³¹31. Feuerwerker LCM, Costa H. Intersetorialidade na Rede Unida. Divulgação em Saúde para Debate 2000; 22:25-35.. In the course of providing intersectoral health services, it is necessary to establish the paradigm for the social production of health and provide tools to deal with the impact of the stigma in the health of TB patients.

Regarding the limitations of the study, it is important to take into account that Brazil is a large country, with cultural, historical, and social differences that may affect the processes of cultural adaptation and validation of scales of subjective assessment like the Tuberculosis-related stigma scale.

The need of application of the scale by interviewers may have impacted the choices of the respondents. However, this is the most appropriate method of data collection when the subjects present difficulties such as the ability to write reliably, illiteracy, or people with low educational levels and low income. This limitation was also pointed out by researchers in the process of validation of the stigma tool in Nicaragua¹²12. Macq J, Solis A, Martinez G. Assessing the stigma of tuberculosis. Psychol Health Med 2006; 11(3):346-352..

The interaction of TB patients with people reveal discriminatory behavior and their devaluation in family, society, and health services. The investigation of this interaction and its implications in the control of the disease requires new approaches, producing theoretical and methodological challenges for researchers.

Preliminary results of the scale indicate adequacy of the equivalence between the original and the Brazilian versions, considering the assessed linguistic and cultural variations. However, the scale validation process is in progress and the analyses of future psychometric properties will test the reliability and validity of the scale in the Brazilian context in order to complement the presented cultural adaptation.

According to disclosed publications about the impact of stigma associated with TB and the practical experience in the process of cultural adaptation of the scale, a scarcity of assessments of stigma related to TB in comparison with other health conditions was verified. Adapted, validated scales may contribute in the study of populations affected by the stigma of TB and support interventions of actions on this disease that will reflect the experience of living with people affected by this disease.

Making the Tuberculosis-related stigma scale available in Brazil may enable the comparison of the results of research between two countries and foster discussions on strategies to reduce stigma in different social realities.

Acknowledgements

The authors thank the São Paulo Research Foundation (FAPESP), the Municipal Department of Health of Ribeirão Preto/SP, and the groups DISABKIDS® Europa and DISABKIDS Brasil. We also thank the authors of the original Tuberculosis-related stigma scale, Annelies Van Rie and Aaron M. Kipp for the support provided during the stages of cultural adaptation of the scale to Brazilian Portuguese.

References

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