Mothers and special sons: reactions, felings and explanations about child disability

O nascimento de uma criança deficiente traz nova realidade à família. O objetivo foi apreender quais reações, explicações, sentimentos e expectativas as mães exprimiam frente à notícia da deficiência do filho. A amostra caracterizou-se por 25 mães encaminhadas ao Aconselhamento Genético da FMRP- USP, entrevistadas individualmente sobre um roteiro semi-estruturado. Delas, 38% estavam entre 20/25 anos e Iº grau incompleto (71 %). As crianças 52% com até 1 ano. Os diagnósticos: 24% Síndrome de Down e 20% sem diagnóstico. Os dados - Análise de Conteúdo Temática - demonstraram que ao receberem a notícia as mães ficaram chocadas. Manifestaram sentimentos de negação, tristeza, resignação, revolta. Explicaram a problemática cientificamente e por crendices populares. Negaram a deficiência. Apresentaram expectativas à cura. Independente da problemática, a notícia choca. Há dificuldade em aceitar o diagnóstico e constante busca de cura. Os profissionais devem conhecer as condições emocionais lidando, assim, efetivamente com a realidade de cada família.The born of child with disability give new reality to the family. The objective of this study was to determine the reactions, explanations, feelings and expectations the mothers present when notificated of the children disability. The study was conducted on twenty five mothers referred to the Genetic Counseling of the Faculty of Medicine de Ribeirão Preto - University of São Paulo. We used a semi-structural questionnaire. About the mothers, 38% aged between 20 to 25 years-old and 71% first incomplete degree. The children, 52% less than one year-old. Their diagnosis were 24% Down's Syndrome and 20% didn't have diagnosis. The data - qualitative analysis - demonstrated the emotional impact of the news was found to be as strong as a shock. Denial, sadness, resignation and revolt were some of the feelings experienced by the mothers. The explanation of the disability was from scientific aspects to popular belief. They expected theirs sons to be cured. Independently to the problem, the notification was the shock. To the mothers was difficult to accepted the diagnosis and found the cure indefatigably. The professionals have to known this emotional conditions to work effectively with the reality of every family

Mães e filhos especiais: reações, sentimentos e explicações à deficiência da criança

The born of child with disability give new reality to the family. The objective of this study was to determine the reactions, explanations, feelings and expectations the mothers present when notificated of the children disability. The study was conducted on twenty five mothers referred to the Genetic Counseling of the Faculty of Medicine de Ribeirão Preto - University of São Paulo. We used a semi-structural questionnaire. About the mothers, 38% aged between 20 to 25 years-old and 71% first incomplete degree. The children, 52% less than one year-old. Their diagnosis were 24% Down's Syndrome and 20% didn't have diagnosis. The data - qualitative analysis - demonstrated the emotional impact of the news was found to be as strong as a shock. Denial, sadness, resignation and revolt were some of the feelings experienced by the mothers. The explanation of the disability was from scientific aspects to popular belief. They expected theirs sons to be cured. Independently to the problem, the notification was the shock. To the mothers was difficult to accepted the diagnosis and found the cure indefatigably. The professionals have to known this emotional conditions to work effectively with the reality of every family.O nascimento de uma criança deficiente traz nova realidade à família. O objetivo foi apreender quais reações, explicações, sentimentos e expectativas as mães exprimiam frente à notícia da deficiência do filho. A amostra caracterizou-se por 25 mães encaminhadas ao Aconselhamento Genético da FMRP- USP, entrevistadas individualmente sobre um roteiro semi-estruturado. Delas, 38% estavam entre 20/25 anos e Iº grau incompleto (71 %). As crianças 52% com até 1 ano. Os diagnósticos: 24% Síndrome de Down e 20% sem diagnóstico. Os dados - Análise de Conteúdo Temática - demonstraram que ao receberem a notícia as mães ficaram chocadas. Manifestaram sentimentos de negação, tristeza, resignação, revolta. Explicaram a problemática cientificamente e por crendices populares. Negaram a deficiência. Apresentaram expectativas à cura. Independente da problemática, a notícia choca. Há dificuldade em aceitar o diagnóstico e constante busca de cura. Os profissionais devem conhecer as condições emocionais lidando, assim, efetivamente com a realidade de cada família

Congenital adrenal hiperplasia: The diagnosis comprehension and auto-image implications

The congenital adrenal hyperplasia (CAH) is a genetic syndrome characterized as a condition of intersexuality. Seven womem with CAH were individually interviewed, under care of the clinic for Determination and Sexual Differentiation of HCFMRP-USP the aim of this alway was evaluate how they knew about the CAH. The women aged from eighteen to forty years old, five underwent genital corrective surgery, and all women belong to a low social and cultural status and education. The results indicated some kind of understanding about the syndrome. Four single women did not initiate their sexual life and three of them claimed that the syndrome was the major difficulty for that. All women did not refer physical prejudice related to vulva reconstitution and they were capable to have pleasure and orgasms.A Hiperplasia Congênita de Supra-Renal (HCSR) é uma síndrome genética, que caracteriza uma condição de intersexualidade. No intuito de compreender o que as mulheres conhecem sobre a síndrome, foram entrevistadas sete mulheres portadoras de HCSR, com idades entre 18 e 40 anos, de baixo nível sociocultural, dentre as quais 5 realizaram cirurgia corretiva de genitália, sendo 3 casadas e 4 solteiras. Os resultados indicaram entendimento sobre a síndrome. As 4 mulheres solteiras não iniciaram vida sexual e 3 delas colocaram a síndrome como principal dificuldade. Todas referiram satisfação com a cirurgia corretiva, não sofrendo prejuízos relacionados ao prazer e orgasmos, porém têm dificuldades relacionadas à auto-imagem