0778/2011 - “Decisões reprodutivas e triagem neonatal: a perspectiva de mulheres cuidadoras de crianças com doença falciforme”. Newborn screening and reproductive decisions: the perspective of caregivers about sickle cell disease
• Cristiano Guedes - Guedes, C. - Brasília, Distrito Federal - Universidade de Brasília - <cguedes@unb.br>
Área Temática:
Ciências Sociais
Resumo:
Um dos objetivos do Programa Nacional de Triagem Neonatal para doença falciforme, criado em 2001, foi o de informar casais com chances de ter filhos com doenças falciformes para a tomada de decisões reprodutivas. Este artigo apresenta as escolhas reprodutivas e analisa a noção de risco reprodutivo biomédico de mulheres cuidadoras de crianças com doença falciforme inseridas em um programa de triagem neonatal. O levantamento de dados qualitativos, realizado de 2006 a 2008, foi baseado em entrevistas com 50 mulheres cuidadoras de crianças com doença falciforme participantes do Programa de Triagem Neonatal do Distrito Federal. A pesquisa revelou as seguintes percepções no campo das decisões reprodutivas: mulheres que querem ter outros filhos mesmo sob o risco de recorrência da doença; mulheres que não querem mais ter filhos; e mulheres cujo projeto reprodutivo ainda está sendo elaborado com base nas informações recebidas no programa de triagem. O estudo mostrou que as escolhas reprodutivas das mulheres são embasadas na experiência do cuidado dos filhos e de si. A noção de risco reprodutivo é construída de modo a fortalecer as decisões das mulheres perante a família e outros grupos sociais ao qual pertence.
One of the goals of Brazilian National Newborn Screening Program, created in 2001, was to inform couples with chances of having children with sickle cell diseases in relation to reproductive decision-making. This article presents the reproductive choices and analyses the notion of reproductive risk of female caregivers of children with sickle cell disease participating in a newborn screening program. Qualitative data, gathered from 2006 to 2008, consisted of interviews with 50 women who took care of children with sickle cell disease participating in the Federal District’s Newborn Screening Program. The research revealed the following perceptions underlying reproductive decisions: women who want to have other children even under the risk of disease recurrence; women who do not want to have more children; and women whose reproductive project is still being conceived based on the information provided by the newborn screening program. The study demonstrated that women’s reproductive choices are based on the experience of child care and self care. The notion of reproductive risk is built in order to strengthen women’s decisions in the different power relations in which they are involved. The notion of reproductive risk is built in order to strengthen women’s decisions in the family and other social groups to which it belongs.
Keywords:
newborn screening
reproductive decisions
sickle cell disease
women
genetics
Newborn screening and reproductive decisions: the perspective of caregivers about sickle cell disease
Resumo (abstract):
One of the goals of Brazilian National Newborn Screening Program, created in 2001, was to inform couples with chances of having children with sickle cell diseases in relation to reproductive decision-making. This article presents the reproductive choices and analyses the notion of reproductive risk of female caregivers of children with sickle cell disease participating in a newborn screening program. Qualitative data, gathered from 2006 to 2008, consisted of interviews with 50 women who took care of children with sickle cell disease participating in the Federal District’s Newborn Screening Program. The research revealed the following perceptions underlying reproductive decisions: women who want to have other children even under the risk of disease recurrence; women who do not want to have more children; and women whose reproductive project is still being conceived based on the information provided by the newborn screening program. The study demonstrated that women’s reproductive choices are based on the experience of child care and self care. The notion of reproductive risk is built in order to strengthen women’s decisions in the different power relations in which they are involved. The notion of reproductive risk is built in order to strengthen women’s decisions in the family and other social groups to which it belongs.
Palavras-chave (keywords):
newborn screening
reproductive decisions
sickle cell disease
women
genetics
Guedes, C.. “Decisões reprodutivas e triagem neonatal: a perspectiva de mulheres cuidadoras de crianças com doença falciforme”.. Cien Saude Colet [periódico na internet] (2012/abr). [Citado em 23/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/decisoes-reprodutivas-e-triagem-neonatal-a-perspectiva-de-mulheres-cuidadoras-de-criancas-com-doenca-falciforme/9793?id=9793
