The Second Step In The Construction Of A Stigma Scale Of Epilepsy

Rationale: The issue of stigmatization is one of the most common psychosocial problems faced by people with epilepsy. Purpose: A second step towards the development of a scale to measure epilepsy stigma. Method: We applied a closed questionnaire to 12 patients and 32 relatives from the Epilepsy Outpatient Clinic at the University Hospital of Campinas. Results: The results are grouped in three main domains: medical, social and personal areas. Medical: the subjects did not know exactly what epilepsy is or how it is caused; nonetheless they know how to treat it. Social: the most important areas that people with epilepsy are discriminated are at work and social relationships. Patients also complained about their lack of freedom and limits on recreation activities. Personal Area: subjects apparently have the same feelings and thoughts about epilepsy and seizures. Conclusion: This study analyzed the most common aspects presented in the questionnaire to assess epilepsy stigma for the Brazilian culture which are the base to the elaboration of a stigma scale of epilepsy.632 B395398Fernandes, P.T., Souza, E.A., Identification of family variables in parents' groups of children with epilepsy (2001) Arq Neuropsiquiatr, 59, pp. 854-858Li, L.M., Sander, J.W., National demonstration project on epilepsy in Brazil (2003) Arq Neuropsiquiatr, 61, pp. 153-156Leidy, N.K., Rentz, A.M., Grace, E.M., Evaluating health-related quality of life outcomes in clinical trials of antiepileptic drug therapy (2004) Epilepsia, 39, pp. 965-977Baker, G.A., Brooks, J., Buck, D., Jacoby, A., The stigma of epilepsy: A European perspective (2000) Epilepsia, 41, pp. 98-104Baker, G.A., Nashef, L., Van Hout, B.A., Current issues in the management of epilepsy: The impact of frequent seizures on cost of illness, quality of life, and mortality (1997) Epilepsia, 38 (SUPPL. 1), pp. S1-S8Baker, G.A., Jacoby, A., Chadwick, D.W., The associations of psychopathology in epilepsy: A community study (1996) Epilepsy Res, 25, pp. 29-39Jacoby, A., Felt versus enacted stigma: A concept revisited. Evidence from a study of people with epilepsy in remission (1994) Soc Sci Med, 38, pp. 269-274Placencia, M., Farmer, P.J., Jumbo, L., Sander, J.W., Shorvon, S.D., Levels of stigmatization of patients with previously untreated epilepsy in northern Ecuador (1995) Neuroepidemiology, 14, pp. 147-154Ratsepp, M., Oun, A., Haldre, S., Kaasik, A.E., Felt stigma and impact of epilepsy on employment status among Estonian people: Exploratory study (2000) Seizure, 9, pp. 394-401Scambler, G., Hopkins, A., Generating a model of epileptic stigma: The role of qualitative analysis (1990) Soc Sci Med, 30, pp. 1187-1194Ryan, R., Kempner, K., Emlen, A.C., The stigma of epilepsy as a self-concept (1980) Epilepsia, 21, pp. 433-444Fernandes, P.T., Salgado, P.C., Ala, N., Barbosa, F.D., Souza, E.A., Li, L.M., Stigma Scale of Epilepsy: Conceptual issues (2004) J Epilep Clin Neuropshysiology, 10, pp. 213-218McLin, W.M., De Boer, H.M., Public perceptions about epilepsy (1995) Epilepsia, 36, pp. 957-95

Perception And Attitudes Towards Epilepsy: Point Of View Of Professionals Allied To Medicine From Mobile Emergency Service In Campinas

Introduction: Epilepsy is very prevalent in our society, but unfortunately lack of knowledge is still very common, contributing to psycho-social difficulties to people with epilepsy. Purpose: The aim of this study was to assess the epilepsy' perception and attitudes by professionals of emergency medical service in Campinas, Brazil. Material and methods: This study was carried out with professionals of SAMU-192, who participated on the VII Stroke Workshop of Campinas in November 2007. Results: One hundred-forty nine (149) professionals answered the questionnaire (49% women, average age of 37 years, range from 21 to 59 year). Ninety (60%) were professionals allied to medicine (nurses, health auxiliary, dentists), six (4%) were physicians and 53 (36%) were other professions (secretary, driver). In overall, a great majority of the subjects had an appropriate knowledge regarding epilepsy. But, some beliefs are still present. In relation to epilepsy' perception, some wrong ideas appeared, as epilepsy is a contagious disease, people with epilepsy can not practice physical exercise or to work. Also, the doubts regarding pregnancy and treatment of epilepsy were observed. Regarding attitudes during an epileptic seizure, some inadequate attitudes appeared: to put something in patient's mouth, to restrict the patients' movements or give something strong to smell (alcohol or vinegar) in order to stop the seizure. Conclusion: In this context, it is necessary a continuous education programs to the allied health professionals to improve the perception and attitudes, bringing epilepsy out of the shadows.153119122Fernandes, P.T., Li, L.M., (2005) Estigma na Epilepsia Departamento de Neurologia, , FCM/UNICAMP;Fernandes, P.T., Salgado, P.C., Noronha, A.L.A., de Boer, H.M., Prilipko, L., Sander, J.W., Epilepsy stigma perception in an urban area of a limited resource country (2007) Epilepsy Behav, 11 (1), pp. 25-32Guerreiro, C.A., Guerreiro, M.M., Cendes, F., Lopes-Cendes, I., (2000) Considerações gerais, pp. 1-10. , Lemos Editorial. Epilepsia. 3rd edLi, L.M., Sander, J.W., National demonstration project on epilepsy in Brazil] (2003) Arq Neuropsiquiatr, 61 (1), pp. 153-156. , Mar;Marchetti, R.L., de Castro, A.P., Daltio, C.S., Cremonese, E., Ramos, J.M., Neto, J.G., Attitudes of Brazilian psychiatrists toward people with epilepsy (2004) Epilepsy Behav, 5 (6), pp. 999-1004. , Dec;Marchetti, R.L., Epilepsy in the shadow of Brazilian psychiatry] (2004) Rev Bras Psiquiatr, 26 (1), pp. 67-68. , Mar;Jacoby, A., Chadwick, D., Psychosocial problems in epilepsy (1992) BMJ, 305 (6845), p. 117. , July;Jacoby, A., Gorry, J., Gamble, C., Baker, G.A., Public knowledge, private grief: A study of public attitudes to epilepsy in the United Kingdom and implications for stigma (2004) Epilepsia, 45 (11), pp. 1405-1415. , Nov;Baker, G., The Psychosocial Burden of Epilepsy (2002) Epilepsia, 43 (SUPPL. 6), pp. 26-30Austin, J.K., Shafer, P.O., Deering, J.B., Epilepsy familiarity, know-ledge, and perceptions of stigma: Report from a survey of adolescents in the general population (2002) Epilepsy Behav, 3 (4), pp. 368-375. , Aug;Suurmeijer, T.P., Reuvekamp, M.F., Aldenkamp, B.P., Social functioning, psychological functioning, and quality of life in epilepsy (2001) Epilepsia, 42 (9), pp. 1160-1168. , Sept;Fernandes, P.T., Li, L.M., Percepção de estigma na epilepsia. (2006) Journal of Epilepsy and Clinical Neurophysiology, 12 (4), pp. 207-218Jacoby, A., Impact of epilepsy on employment status: Findings from a UK study of people with well-controlled epilepsy (1995) Epilepsy Res, 21 (2), pp. 125-132. , June;Fernandes, P.T., Noronha, A.L., Sander, J.W., Bell, G.S., Li, L.M., Training the trainers and disseminating information: A strategy to educate health professionals on epilepsy (2007) Arq Neuropsiquiatr, 65 (SUPL 1), pp. 14-22Noronha, A.L., Fernandes, P.T., Andrade, M.G.G., Santiago, S.M., Sander, J.W., Li, L.M., Training medical students to improve the management of people with epilepsy (2007) Arq Neuropsiquiatr, 65 (SUPL 1), pp. 23-27Fernandes, P.T., Salgado, P.C., Noronha, A.L.A., Barbosa, F.D., Souza, E.A., Li, L.M., Stigma Scale of Epilepsy: Conceptual issues (2004) Journal of Epilepsy and Clinical Neurophysiology, 10 (4), pp. 213-218Reno, B.A., Fernandes, P.T., Bell, G.S., Sander, J.W., Li, L.M., Stigma and attitudes on epilepsy: A study with secondary school students (2007) Arq Neuropsiquiatr, 65 (SUPL 1), pp. 49-5

Formation Of Groups As Psychological And Social Support In Epilepsy [formação De Grupos Como Suporte Psicológico E Social Na Epilepsia]

Epilepsy is a neurological condition that affects patients and their family behavior and well-being often leading to social withdrawn. For this reason, it is important that people learn about epilepsy, and which are the social implications on the lives of people with epilepsy stop them of being victims of the stigma in the community. This article aims to show the importance of working with groups in epilepsy. We try to provide basic guidelines towards achieving effective results. The group dynamics improves the interpersonal relationships, focusing the treatment of their problems and difficulties, especially in chronic diseases. Our experience has shown that this intervention has a great potential to provide well-being, reducing the people's anxiety and ultimately providing improvement in the quality of life and reduction of the felt stigma.103171174Fernandes, P.T., Souza, E.A.P., Identification of family variables in parent's groups of children with epilepsy (2001) Arquivos de Neuropsiquiatria, 59 (4), pp. 854-858Baker, G.A., The psychosocial burden of epilepsy (2002) Epilepsia, 43 (6), pp. 26-30www.aspebrasil.org, ASPEPalmini, A., Costa, J.C., Introdução à epileptologia clínica e classificação das epilepsias e crises epilépticas (1998) Fundamentos neurobiológicos das epilepsias: Aspectos clínicos e cirúrgicos, pp. 149-161. , Costa JC, Palmini A, Yacubian EMT, Cavalheiro EA, editors:, São Paulo. Lemos editorial;Guerreiro, C.A.M., Guerreiro, M.M., (1999) Epilepsia: O paciente otimamente controlado, , São Paulo: Lemos editorial;, 83pGoldstein, J., Seidenberg, M., Peterson, R., Fear of seizures and behavioral functioning in adults with epilepsy (1990) Journal of Epilepsy, 3, pp. 101-106Scambler, G., Hopkins, A., Being epileptic: Coming to terms with stigma (1986) Sociology of health and illness, 8, pp. 26-43Fernandes, P.T., Souza, E.A.P., Procedimento educativo na epilepsia infantil (2001) Estudos de Psicologia, 6 (1), pp. 115-120Baker, G.A., Jacoby, A., Buck, D., Stalgis, C., Monnet, D., Quality of Life of people with epilepsy: An European study (1997) Epilepsia, 38 (3), pp. 353-362Gumnit, R.J., (1997) Living well with epilepsy, , New York: Demos Vermande;, 249pGuerreiro, M.M., Silva, E.A., Scotoni, A.E., Souza, E.A.P., Qualidade de vida em epilepsia na infância (1994) Jornal da Liga Brasileira de Epilepsia, 7 (1), pp. 21-26Fernandes, P.T., Souza, E.A.P., Grupos de pais na epilepsia infantil: Uma visão psicológica (2003) Journal of Epilepsy and Clinical Neurophysiology, 9 (4), pp. 225-229Guerreiro, C.A.M., Guerreiro, M.M., Cendes, F., Lopes-Cendes, I., (1999) Epilepsia, , São Paulo, Lemos Editorial;Guerreiro CAM, Guerreiro MM. Epilepsia - 50 FAQ (Frequently Asked Questions). São Paulo, EPM (Editora de Produtos Médicos)2004Revistas, A.S.P.E., Sem Crise, , www.aspebrasil. org, Disponível emRevista ComCiência (Neurociências: Epilepsia 200234). Disponível em: 〈www.comciencia.br/reportagens/epilepsia

V National Week Of Epilepsy Awareness In Campinas [v Semana Nacional De Conscientização Da Epilepsia Em Campinas]

Epilepsy is a common neurological condition and 70% can achieve seizure control, however, it is still often to observe myths and beliefs regarding epilepsy in our society. The National Demonstration Project on Epilepsy part of WHO/ILAE/IBE Global Campaign Against Epilepsy in Brazil brought important changes in our society through a national movement of epilepsy carried out by lay associations. The National Week of Epilepsy, on the September 9th is one the major national movements with purpose to promote epilepsy awareness within our society and aiming to reduce prejudice associated with this condition. ASPE, a non-governmental organization, participates actively in the movement since its origin in 2003. We believe that the results contribute to reinforce the national movement to bring epilepsy out of the shadows, diminishing the associated stigma and improving the quality of life of people with epilepsy and their families.134197200Fernandes, P.T., Li, L.M., Percepção de estigma na epilepsia (2006) J Epilepsy Clin Neurophysiol, 12 (4), pp. 207-218Noronha, A.L.A., Borges, A., Marques, L.H., Zanetta, D., Fernandes, P.T., De Boer, H.M., Prevalence and Pattern of Epilepsy Treatment in Different Social-economic Classes in Brazil (2007) Epilepsia, pp. 1-6Li, L.M., Sander, J.W., National demonstration project on epilepsy in Brazil (2003) Arq Neuropsiquiatr, 61 (1), pp. 153-156Li, L.M., Fernandes, P.T., Noronha, A.L.A., Marques, L.H.N., Borges, M.A., Cendes, F., Guerreiro, C.A.M., Sander, J.W., Demonstration project on epilepsy in Brazil: Situation assessment (2007) Arquivos de Neuro-Psiquiatria, 65 (SUPPL. 1), pp. 5-13. , http://www.scielo.br/pdf/anp/v65s1/a02v65s1.pdfLi, L.M., Fernandes, P.T., Noronha, A.L.A., Marques, L.H.N., Borges, M.A., Borges, K., Cendes, F., Sander, J.W., Demonstration project on epilepsy in Brazil: Outcome assessment (2007) Arquivos de Neuro-Psiquiatria, 65 (SUPPL. 1), pp. 58-62. , http://www.scielo.br/pdf/anp/v65s1/a10v65s1.pdfFernandes, P.T., Noronha, A.L., Sander, J.W., Li, L.M., National epilepsy movement in Brazil (2007) Arq Neuropsiquiatr, 65 (SUPPL. 1), pp. 55-57Fernandes, P.T., Noronha, A.L.A., Cendes, F., Silvado, C., Guerreiro, C.A.M., Li, L.M., Report of the I National Meeting of Associations and Support Groups of People with Epilepsy (2003) Journal of Epilepsy and Clinical Neurophysiology, 9 (2), pp. 93-96. , http://www.epilepsia.org.br/epi2002/JEp9-2.zipFernandes, P.T., Souza, R.J., Li, L.M., Relatório da II Semana Nacional de Epilepsia (2004) J Epilepsy Clin Neurophysiol, 10 (4), pp. 245-247Fernandes, P.T., Leitão, L.M., Souza, R.J., Li, L.M., Relatório do II Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia (2004) J Epilepsy Clin Neurophysiol, 10 (2), pp. 117-120Fernandes, P.T., Souza, R.J., Li, L.M., Relatório do III Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia (2005) J Epilepsy Clin Neurophysiol, 11 (2), pp. 97-99Fernandes, P.T., Souza, R.J., Li, L.M., Relatório da III Semana Nacional de Epilepsia (2005) J Epilepsy Clin Neurophysiol, 11 (4), pp. 205-20

Vi National Week Of Epilepsy Awareness In Campinas [vi Semana Nacional De Conscientização Da Epilepsia Em Campinas]

Epilepsy is a common neurological condition; however, it is still very frequent to observe myths and inadequate behaviors regarding epilepsy in our society. The National Demonstration Project "Epilepsy out of the shadows" brought important changes in our society through a national movement of epilepsy carried out by lay associations. The National Week of Epilepsy, on the September 9th is one the major national movements with purpose to promote epilepsy awareness within our society about epilepsy. ASPE, a non-governmental organization, participates actively in the movement since its origin in 2003. We believe that the results contribute to reinforce the national movement to bring epilepsy out of the shadows, diminishing the associated stigma and improving the quality of life of people with epilepsy and their families.144197199Baker, G., The Psychosocial Burden of Epilepsy (2002) Epilepsia, 43, pp. 26-30Fernandes, P.T., Li, L.M., Percepção de estigma na epilepsia (2006) Journal of Epilepsy and Clinical Neurophysiology, 12, pp. 207-218Noronha, A.L.A., Borges, A., Marques, L.H., Prevalence and Pattern of Epilepsy Treatment in Different Social-economic Classes in Brazil (2007) Epilepsia, 48, pp. 880-885Li, L.M., Sander, J.W., National demonstration project on epilepsy in Brazil (2003) Arq Neuropsiquiatr, 61, pp. 153-156Li, L.M., Fernandes, P.T., Noronha, A.L.A., Marques, L.H.N., Borges, M.A., Cendes, F., Guerreiro, C.A.M., Sander, J.W., Demonstration project on epilepsy in Brazil: Situation assessment (2007) Arquivos de Neuro-Psiquiatria, 65 (SUPPL. 1), pp. 5-13. , http://www.scielo.br/pdf/anp/v65s1/a02v65s1.pdfLi, L.M., Fernandes, P.T., Noronha, A.L.A., Marques, L.H.N., Borges, M.A., Borges, K., Cendes, F., Sander, J.W., Demonstration project on epilepsy in Brazil: Outcome assessment (2007) Arquivos de Neuro-Psiquiatria, 65 (SUPPL. 1), pp. 58-62. , http://www.scielo.br/pdf/anp/v65s1/a10v65s1.pdfFernandes, P.T., Noronha, A.L., Sander, J.W., Li, L.M., National epilepsy movement in Brazil (2007) Arq Neuropsiquiatr, 65 (SUPPL. 1), pp. 55-57Fernandes, P.T., Noronha, A.L.A., Cendes, F., Silvado, C., Guerreiro, C.A.M., Li, L.M., Report of the I National Meeting of Associations and Support Groups of People with Epilepsy (2003) Journal of Epilepsy and Clinical Neurophysiology, 9 (2), pp. 93-96. , http://www.epilepsia.org.br/epi2002/JEp9-2.zipFernandes, P.T., Souza, R.J., Li, L.M., Relatório da II Semana Nacional de Epilepsia (2004) Journal of Epilepsy and Clinical Neurophysiology, 10, pp. 245-247Fernandes, P.T., Leitão, L.M., Souza, R.J., Li, L.M., Relatório do II Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia (2004) Journal of Epilepsy and Clinical Neurophysiology, 10, pp. 117-120Fernandes, P.T., Souza, R.J., Li, L.M., Relatório do III Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia (2005) Journal of Epilepsy and Clinical Neurophysiology, 11, pp. 97-99Fernandes, P.T., De Souza, R.J., Li, L.M., Report of the III National Week of Epilepsy (2005) Journal of Epilepsy and Clinical Neurophysiology, 11 (4), pp. 205-207. , http://www.epilepsia.org.br/epi2002/JEp205-7.pdfFernandes, P.T., Noronha, A.L.A., Gimenez, P., Coan, A.C., Ling, L.H., Li, L.M., V Semana Nacional de Conscientização da Epilepsia em Campinas (2007) Journal of Epilepsy and Clinical Neurophysiology, 13, pp. 197-200Fernandes, P.T., Noronha, A.L.A., Gimenez, P., Ling, L.H., Coan, A.C., Li, L.M., Relatório do VI Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia (2008) Journal of Epilepsy and Clinical Neuropshysiology, 14, pp. 85-8

Training Medical Students To Improve The Management Of People With Epilepsy

Purpose: To evaluate the knowledge, attitude and perception of medical students prior to and after a training course about epilepsy. Methods: We used a KAP questionnaire with sixty-one questions which assesses knowledge, attitude and practice of epilepsy. Questionnaires were completed by 185 medical students, before and after epilepsy training. We compared the answers to see whether the lecture had changed the knowledge, attitude and practice in epilepsy. Results: One hundred and six students completed the questionnaire before an eight hour course on epilepsy and 79 students completed the questionnaire one year after the course. Comparison of the knowledge scores prior to (mean=53.9, standard deviation=11.4) and after the course (mean=63.8, standard deviation=11.9) showed that students had improved knowledge after the course (t-test=5.6, p<0.001). Discussion: Training course on epilepsy for medical students can promote improvement in the knowledge, attitudes and perception regarding epilepsy, which is maintained one year later. These results highlight the importance of continuous educational programs within the Medical Curriculum.65SUPPL. 12327Reynolds, E.H., The ILAE/IBE/WHO Global Campaign against epilepsy: Bringing epilepsy Out of the shadows:. Epilepsy (2000) Behav, 1, pp. S3-S8Sander, J.W., The epidemiology of epilepsy revisited (2003) Curr Opin Neurol, 16, pp. 165-170Saraceno, B., The WHO World Health Report 2001 on mental health (2002) Epidemiol Psichiatr Soc, 11, pp. 83-87Shorvon, S.D., Farmer, P.J., Epilepsy in developing countries: A review of epidemiological, sociocultural, and treatment aspects (1988) Epilepsia, 29 (SUPPL. 1), pp. S36-S54Noronha, A.L.A., Borges, A., Marques, L.H., Prevalence and pattern of epilepsy treatment in different social-economic classes in Brazil (2007) Epilepsia, **(*), pp. 1-6. , doi:10.1111/j.1528-1167.2006.00974Li, L.M., Sander, J.W., National demonstration project on epilepsy in Brazil (2003) Arq Neuropsiquiatr, 61, pp. 153-15

Fighting Against The Stigma In Epilepsy By Awareness Through Out Of Media [combate Ao Estigma Na Epilepsia Pela Conscientização Através Da Mídia]

Epilepsy is still a stigmatizing condition nowadays. It is time to react and to bring down the prejudice. The goal of this paper is to provide an easy instrument for fighting against the stigma in epilepsy, through an appropriate expression and widespread information of this condition, so that the stigma can be minimized. The instrument used is part of the Kit anti-stigma CD, released in March, 2003, by ASPE (Assistência à Saúde de Pacientes com Epilepsia) and refers to a letter addressed to the media, seeking the promotion and awareness of epilepsy.103167170Jacoby, A., Stigma, epilepsy and quality of life (2002) Epilepsy & Behavior, 3, pp. S10-S20Baker, G.A., The psychosocial burden of epilepsy (2002) Epilepsia, 43 (6), pp. 26-30Guerreiro, C.A.M., Guereiro, M.M., (1999) Epilepsia - o paciente otimamente controlado, , São Paulo: Lemos Editorial;, 83pScambler, G., Hopkins, A., Generating a model of epileptic stigma: The role of quantitative analysis (1990) Soc Sci Med, 30 (11), pp. 1187-1194ASPE. CD Kit anti-estigma 2003Guerreiro, C.A.M., Guerreiro, M.M., Cendes, F., Lopes-Cendes, I., (1999) Epilepsia, , São Paulo: Lemos Editorial;Guerreiro CAM, Guerreiro MM. Epilepsia - 50 FAQ (Frequently Asked Questions). São Paulo: EPM (Editora de Produtos Médicos)2004Revista, A.S.P.E., Sem Crise, , www.aspebrasil. org, Disponível emRevista ComCiência (Neurociências: Epilepsia 200234). Disponível em: 〈www.comciencia.br/reportagens/epilepsia

Stigma Scale Of Epilepsy: Conceptual Issues

Rationale: The term stigma has many associations and implications over the history. According to Goffman (1963), the stigmatized person is considered as having a different characteristic from the ones which are accepted in the society and is treated differently by the community. In epilepsy, the stigma has been considered to be one of the most important factors that have a negative influence on the people with epilepsy and their family. In spite of stigma being a concept quite used today, it is still difficult to measure it. In this context, this study is exploratory towards elaboration of a Stigma Scale. Purpose: To conceptualize main domains involved in epilepsy stigma and its meaning in a context of Latin American culture. Methodology: We performed a comprehensive review on this subject in literature to conceptualize the main domains of epilepsy stigma and these were grouped into a series of open questions in order to define perceptions on these items. The exploratory open questionnaire for community had 16 questions and for patient had 4 additional questions. We applied the questionnaire to 40 consecutive people (20 patients and 20 relatives) from the epilepsy outpatient clinic of HC/UNICAMP. Results: The results were presented by the questionnaires domains: medical, social and personal areas. Medical area: the type of treatment that appeared was medication, exams, surgery and religious approach; meaning of epilepsy: convulsion, head injury, faint or problem in the brain; the causes of epilepsy were traumas, psychological and genetic features. The majority of people had got this information from doctors. Social area: according to subjects, the social difficulties faced by people with epilepsy were related with work, prejudice, school, relationships, driving, freedom, leisure and memory. Personal area: the main feelings highlighted by patients and relatives about epilepsy were sadness, dependence, inferiority, insecurity, fear and pity. Discussion: The results showed that the stigma not only coexists with lack of information, but also with inappropriate behaviors in epilepsy. It provides a base for the closed questionnaire (with categories of answers) and for the process of construction of a stigma scale of epilepsy.104213218Goffman E. Stigma: notes on the management of spoiled identity. New York: Touchstone1963Link, B.G., Stigma and its public health implications (2001) Stigma and global health: Developing a research agendaSttaford, M.C., Scott, R.R., (1986) Stigma deviance and social control: Some conceptual issuesReis R, Meinardi H. ILAE/WHO Out of the Shadows Campaign Stigma: does the flag identify the cargo? Epilepsy Behav 20023:33-37Crocker, J., Major, B., Steele, C., Social stigma (1998) The Handbook of Social Psychology, pp. 504-553. , Gilbert DT, Fiske ST, eds, Boston: Mc Graw Hill;Reingold, A.L., The study of stimatizing conditions: An epidemiologic perspective (2001) Stigma and Global Health: Developing a research agendaBaker, G.A., The psychosocial burden of epilepsy (2002) Epilepsia, 43 (SUPPL. 6), pp. 26-30Morrell, M.J., Stigma and epilepsy (2002) Epilepsy Behav, 3, pp. 21-25McLin, W.M., de Boer, H.M., Public perceptions about epilepsy (1995) Epilepsia, 36, pp. 957-959Jacoby, A., Epilepsy and the quality of everyday life. Findings from a study of people with well-controlled epilepsy (1992) Soc Sci Med, 34, pp. 657-666Collings, J.A., Epilepsy and well-being (1990) Soc Sci Med, 31, pp. 165-170Scambler, G., Hopkins, A., Generating a model of epileptic stigma: The role of qualitative analysis (1990) Soc Sci Med, 30, pp. 1187-1194Baker, G.A., Brooks, J., Buck, D., Jacoby, A., The stigma of epilepsy: A European perspective (2000) Epilepsia, 41, pp. 98-104Baker, G., The Psychosocial Burden of Epilepsy (2002) Epilepsia, 43, pp. 26-30Jacoby, A., Felt versus enacted stigma: A concept revisited. Evidence from a study of people with epilepsy in remission (1994) Soc Sci Med, 38, pp. 269-274Austin, J.K., Dunn, D.W., Huster, G.A., Rose, D.F., Development of scales to measure psychosocial care needs of children with seizures and their parents (1998) J Neurosci Nurs, 30, pp. 155-160Jacoby, A., Stigma, epilepsy, and quality of life (2002) Epilepsy Behav, 3, pp. 10-20Bunchaft, G., Cavas, C.S.T., (2002) Sob medida: Um guia de elaboração de medidas do comportamento e suas aplicaçõesDell, J.L., Social dimensions of epilepsy, stigma and response (1986) Psychopatology in epilepsy: Social dimensions, , Whitman S, Hermann BP, editors, New York: Oxford UniversityAustin, J.K., Dunn, D., Huster, G.A., Rose, D.F., Development of scales to measure psychosocial care needs of chidren with seizures and their parents (1998) J Neurosci Nurs, 30, pp. 155-160Jorge, M.R., Adaptação transcultural de instrumentos de pesquisa em saúde mental (2000) Escalas de avaliação clínica em psiquiatria e psicofarmacologia, , Gorestein C, Andrade LHSG, Zuardi AW, editors, São Paulo: Lemos Editorial;Abetz, L., Jacoby, A., Baker, G.A., McNulty, P., Patient-based assessments of quality of life in newly diagnosed epilepsy patients: Validation of the NEWQOL (2000) Epilepsia, 41, pp. 1119-1128Hermann, B.P., Vickrey, B.G., Hays, R.D., A comparison of health-related quality of life in patients with epilepsy, diabetes and multiple sclerosis (1996) Epilepsy Res, 25, pp. 113-118Schneider, J.W., Conrad, P., (1983) Having epilepsy: The experience and control of illness, , Philadelphia: Temple University Press;Ablon, J., The nature of stigma and medical conditions (2002) Epilepsy Behav, 3, pp. 2-9Ryan, R., Kempner, K., Emlen, A.C., The stigma of epilepsy as a self-concept (1980) Epilepsia, 21, pp. 433-44