Prenatal Diagnosis Of Sickle-cell Anemia, Perceptions Of Professionals And Patients

Although prenatal diagnosis of sickle-cell anemia has been facilitated by DNA analysis techniques, there is an ethical controversy about the validity of this procedure. We surveyed 59 geneticists, 55 hematologists and 52 adult patients in Brazil, on their perception of the disease. These patients regularly received medical and psychosocial guidance at the UNICAMP Hemocenter. Most consider their quality of life to be satisfactory despite the high level of discomfort caused by the disease. Although a majority of the geneticists (66%) and hematologists (67%) considered the probability of a patient with sickle-cell anemia leading a productive and socially adjusted life high when properly treated, most (59% of the geneticists and 51% of the hematologists) considered prenatal diagnosis to be an important resource for prevention of the disease. Nearly all patients would seek prenatal diagnosis for their children. Of these, 3/4 would prepare for early treatment and 1/4 would opt for abortion.1641049105

Cochlear Implant In Children: The Parents' Point Of View [implante Coclear Em Crianças: A Visão Dos Pais]

The objective of this study was to analyze the point of view of parents in relation to the cochlear implant, their level of information concerning the implant, its risks and benefits, and their expectations towards their childreńs future. Ten parents of deaf children candidate for the cochlear implant at Unicamṕs Clinical Hospital were interviewed. Based on a qualitative approach, a content analysis showed that the majority of parents seek the cure for deafness, and consequently, the acquisition of speech with the cochlear implant. For these families, the cochlear implant is seen both as the solution to their childreńs deafness and as a path for a better future. It has been evidenced that during the acquisition of knowledge about the implant, parents experienced anxiety and anguish when faced with the risks and benefits of the procedure, and the need to choose between performing and not performing the cochlear implant.263465473Amaral, L.A., (1995) Conhecendo a deficiência, , (em companhia de Hércules). São Paulo: RobeBardin, L., (2004) Análise de conteúdo, , (4 a ed.). Lisboa: Edições 70Bento, R.F., Miniti, A., Leiner, A., Sanches, T.G., Oshiro, M.S., Campos, M.I.M., Gomez, M.V.G., Oyama, H.T.T., O implante coclear FMUSP-1: Apresentação de um programa brasileiro e seus resultados preliminares (1994) Otorrinolaringologia, 60, pp. 1-16Bevilacqua, M.C., A ética em programas de implante coclear em crianças (2001) Boletim de Psicologia, 51, pp. 169-176Bevilacqua, M.C., Costa Filho, O.A.C., Moret, A.L.M., Implante coclear em crianças (2003) Tratado de otorrinolaringologia, Vol. 2, pp. 268-277. , C. A. H. Campos & H. O. O. Costa (Eds.), São Paulo: RocaBevilacqua, M.C., Formigoni, G.M.P., (2000) Audiologia educacional: Uma opção terapêutica para a criança deficiente auditiva, , (3 a ed.). São Paulo: Pró-FonoBevilacqua, M.C., Moret, A.L.M., Reabilitação e implante coclear (1997) Tratado de fonoaudiologia, pp. 401-414. , O. Lopes Filho (Org.), São Paulo: RocaBevilacqua, M.C., Moret, A.L.M., Costa Filho, O.A., Nascimento, L.T., Banhara, M.R., Implantes cocleares em crianças portadoras de deficiência auditiva decorrente de meningite (2003) Revista Brasileira de Otorrinolaringologia, 69, pp. 760-764Costa, O.A., Bevilcqua, M.C., Amantini, R.C.B., Considerações sobre o implante coclear em crianças (2005) Deficiência auditiva: Conversando com familiares e profissionais de saúde, pp. 123-138. , M. C. Bevilacqua & A. L. M. Moret (Orgs.), São José dos Campos: PulsoCosta, M.R., Valle, T.G.M., Yamada, M.O., Atendimento interdisciplinar no centro de pesquisas audiológicas: Interferência na ansiedade materna (2000) Pediatria Moderna, 36, pp. 147-151D́avila, C., Campani, R.M., Linden, A., Cirurgia da surdez profunda - riscos do implante coclear (1997) Revista Brasileira de Otorrinolaringologia, 63, pp. 559-565Demetrio, S.E.S., Deficiência auditiva e família (2005) Deficiência auditiva: Conversando com familiares e profissionais de saúde, pp. 235-251. , Em M. C. Bevilacqua & A. L. M. Moret (Orgs.), São José dos Campos: PulsoDenzin, N.K., Lincoln, Y.S., A disciplina e a prática da pesquisa qualitativa (2006) O planejamento da pesquisa qualitativa: Teorias e abordagens, pp. 15-41. , N. K. Denzin, Y. S. Lincoln & cols. (Orgs.), (S. R. Netz, Trad.) Porto Alegre: Artmed. (Trabalho original publicado em 2003)Eleweke, C.J., Rodda, M., Factors contributing to parents' selection of a communication mode to use with their deaf children (2000) American Annals of the Deaf, 145, pp. 375-383Holzheim, D.C.P., Levy, C.C.A.C., Patitucci, S.P.R., Giorgi, S.B., Familia e fonoaudiologia: O aprendizado da escuta (1997) Tratado de fonoaudiologia, pp. 415-436. , O. C. Lopes Filho (Org.), São Paulo: RocaHungria, H., Disacusias. Implante coclear. A criança surda (2000) Otorrinolaringologia, pp. 429-442. , (8 a ed.) Rio de Janeiro: Guanabara KooganLuterman, D.M., Kurtzer-White, E., Seewald, R.C., (1999) The young deaf child, , Baltimore: York PressMangabeira-Albernaz, P.L., Implantes cocleares. Parte 2 (1996) RBM-ORL, 3, pp. 119-122Margall, S.A.C., Honora, M., Carovich, A.L.A., A reabilitação do deficiente auditivo visando qualidade de vida e inclusão social (2006) O Mundo da Saúde, 30, pp. 123-128Martinez, Z.O., Fonoterapia da audição (1998) Otorrinolaringologia pediátrica, pp. 221-223. , T. Sih, (Org.), Rio de Janeiro: RevinterMinayo, M.C.S., (2000) O desafio do conhecimento: Pesquisa qualitativa em saúde, , (7 a ed.). Rio de Janeiro: Hucitec-AbrascoMiniti, A., Bento, R.F., Butugan, O., (2000) Otorrinolaringologia: Clínica e cirúrgica, , (2 a ed.). São Paulo: AtheneuOliveira, J.A., Implante coclear (2005) Medicina (Ribeirão Preto), 38, pp. 262-272Porto, P.R.C., (2002) Avaliação de resultados de implante coclear em pacientes deficientes auditivos secundários a meningite, , Dissertação de Mestrado, Universidade Estadual de Campinas, CampinasTavares, M., (2001) Os efeitos do diagnóstico nos pais da criança surda: Uma análise discursiva, , Dissertação de Mestrado, Pontifícia Universidade Católica de São Paulo, São PauloVirole, B., Implante coclear (2003) Anais do Congresso Surdez e Escolaridade: Desafios e Reflexões, pp. 113-117. , Instituto Nacional de Educação de Surdos (Org.), Rio de Janeiro: INESYamada, M.O., (2002) Dimensão afetiva, segundo a concepção de Emilio Romero, da pessoa com surdez adquirida antes e após o uso do implante coclear, , Dissertação de Mestrado, Universidade de São Paulo, BauruYamada, M.O., Bevilacqua, M.C., O papel do psicólogo no programa de implante coclear do Hospital de Reabilitação de Anomalias Craniofaciais (2005) Estudos de Psicologia (Campinas), 22, pp. 255-262Zenari, C.P., Moretto, M.L.T., Nasralla, H.R., Gavião, A.C.D., Lucia, M.C.S., Bento, R.F., Miniti, A., Aspectos psicológicos de indivíduos portadores de surdez profunda bilateral candidatos ao implante coclear (2004) Arquivos Internacionais de Otorrinolaringologia, 8, pp. 142-14

Sickle Cell Disease As A Public Health Problem In Brazil [a Anemia Falciforme Como Problema De Saúde Pública No Brasil.]

Sickle cell anemia is the most prevalent hereditary disease in Brazil. However, the Brazilian literature registers no investigations into the public health aspects of the disease. This present study investigates the way of life of 80 adult patients (49 women and 31 men) with a diagnosis of sickle cell anemia, at a blood center in Brazil. The late diagnosis of the disease was one of the most significant aspects observed in this group of patients. It was also observed that the dominant problem faced by adult patients with sickle cell anemia is of an economic nature, mainly due to lack of professional opportunities. However, patients can well undertake economic activities under adequate medical supervision, according to their own limitations and potentialities. The psychotherapeutic orientation was well accepted by patients regardless of sex. It is concluded that there exists need for the establishment of community programs for early diagnosis and medical, social and psychological orientation for sickle cell anemia patients in Brazil.271545

Diagnosis Of Low Vision In Children: Feelings And Comprehension Of Mothers [diagnóstico De Baixa Visão Em Crianças: Sentimentos E Compreensão De Mães]

Purpose: To identify mothers' feeling and reactions when facing the diagnosis of low vision and their comprehension of this diagnosis. Methods: This study features a qualitative research. Eleven low vision children's mothers attended at the Visual Stimulation Service of Ophtalmology Sector of Unicamp Hospital were interviewed. Semi-strutured interviews were used to collect data. The main issues of the interview were: feelings when faced with the diagnosis and comprehension of this low vision diagnosis. Results: The results revealed mothers' fear of blindness and a low comprehension of the meaning of low vision, and their interpretation of medical diagnosis according to their subjectivity. Conclusions: The way the diagnosis is transmitted to the families is extremely important. Parents cultural, economical and emocional background may often impair the diagnosis comprehension.726766770Miller, N.B., Ninguém é, perfeito., (1995) Vivendo e crescendo com crianças que têm necessidades especiais, , Campinas: PapirusLecussán, P., A criança e o diagnóstico: o pediatra deve contar à criança doente seu diagnóstico? (2001) Rev Assoc Med Bras, 47 (4), pp. 282-283Minayo, M.C., (1993) O desafio do conhecimento: pesquisa qualitativa em saúde, , São Paulo: HucitecMartins, J., Bicudo, M.A., (1989) A pesquisa qualitativa em Psicologia, , São Paulo: Moraes EducPiovesan, A., Temporini, E.R., Pesquisa exploratória: procedimento metodologico para o estudo de fatores humanos no campo da saúde pública (1995) Rev Saúde Públ, 29 (4), pp. 318-325Cortes, S.M., Técnicas de coleta e análise qualitativa de dados (1998) Cad Sociol, 9, pp. 1-47Bardin, L., (1994) Análise de conteúdo, , Lisboa: PersonnaGarcia Bruno, M.M., O desenvolvimento integral do portador de deficiência visual: da intervenção precoce à integração escolar (1993) São Paulo: NewsworkKleinman, A., (1980) Patient and healers in the context of the culture, , California: University of California PresseHelman, C.G., (1994) Cultura Saúde e doença, , 2a ed. Porto Alegre: Artes MédicasTemporini, E.R., Ação preventiva em problemas visuais de escolares (1984) Rev Saúde Pública, 18 (3), pp. 259-26

Hemoglobin Screening: Response Of A Brazilian Community To Optional Programs [triagem De Hemoglobinopatias: Resposta De Uma Comunidade Brasileira A Programas Opcionais.]

The efficiency and the viability of three hemoglobin screening programs were investigated. They were offered on a voluntary basis to a Brazilian population and started with the analysis of blood donors, pregnant women and students. The hemoglobin screening was done through optional exams which included electrophoresis of hemoglobin and complementary hematological tests. A total of 13,670 people were tested over a period of 39 months and a total of 644 individuals with hereditary hemoglobin disorders were detected - 4. 7% of the samples examined. The programs showed satisfactory indicators of viability and efficiency, expressed by the significative proportion of exams performed among the probands and their relatives.15359159