ABSTRACT
La comunicación del diagnóstico de síndrome de Down tiene serias implicaciones éticas ya que la finalidad del mismo puede ser eugenésica o terapéutica. El objetivo de este artículo es, por un lado, resaltar el papel fundamental que desempeñan los profesionales sanitarios en la comunicación del diagnóstico y la posterior decisión de la madre. Por otra parte, se exponen las recomendaciones sobre la manera de comunicar un diagnóstico. Por último, se analiza el estado de la cuestión en España, para lo que se exponen los resultados de un estudio descriptivo transversal con una muestra de 352 madres en la que expresan, mediante una encuesta, sus experiencias personales sobre como han recibido la noticia. La conclusión a la que se llega es que la comunicación del diagnóstico de síndrome de Down se puede mejorar en muchos aspectos
Down Syndrome diagnosis communication has got serious ethical implications, since the aim thereof can be either eugenic or therapeutic. The purpose of this paper is, on the one hand, to highlight the fundamental role which sanitary professionals play in diagnosis communication and the subsequent decision of the mother. On the other, recommendations on the way to communicate a diagnosis are set out. Finally, in order to analize the state of play in Spain the results of a cross-sectional descriptive study with a sample of 352 mothers are exposed. In this study the mothers express, by means of a survey, their personal experiences of how they have received the news. It is concluded that the communication of Down syndrome diagnosis can be improved in many aspects
Subject(s)
Humans , Female , Health Communication/ethics , Down Syndrome/diagnosis , Prenatal Diagnosis/ethics , Confidentiality , Duty to Warn/ethics , Postnatal Care/ethics , Cross-Sectional Studies , Eugenics , Parental Notification/ethicsABSTRACT
Down Syndrome diagnosis communication has got serious ethical implications, since the aim thereof can be either eugenic or therapeutic. The purpose of this paper is, on the one hand, to highlight the fundamental role which sanitary proffesionals play in diagnosis communication and the subsequent decission of the mother. On the other, recommendations on the way to communicate a diagnosis are set out. Finally, in order to analize the state of play in Spain the results of a cross-sectional descriptive study with a sample of 352 mothers are exposed. In this study the mothers express, by means of a survey, their personal experiencies of how they have received the news. It is concluded that the communication of Down syndrome diagnosis can be improved in many aspects.
Subject(s)
Down Syndrome/diagnosis , Mothers/psychology , Prenatal Diagnosis/ethics , Truth Disclosure/ethics , Abortion, Eugenic/ethics , Adult , Attitude , Cross-Sectional Studies , Decision Making , Down Syndrome/embryology , Down Syndrome/prevention & control , Down Syndrome/psychology , Emotions , Female , Humans , Infant, Newborn , Physician-Patient Relations , Pregnancy , Prenatal Diagnosis/psychology , Psychological Distance , Spain , Value of LifeABSTRACT
El artículo estudia la manera en la que los profesionales sanitarios comunican el diagnóstico de síndrome de Down a los padres. Para eso se analizan los relatos personales de las madres recogidos en las respuestas dadas por aquéllas a las preguntas abiertas de un cuestionario sobre "comunicación del diagnóstico". Los resultados muestran la insatisfacción de las madres ante la información recibida durante el diagnóstico prenatal y postnatal de síndrome de Down
The article studies the way in which health professionals communicate the diagnosis of Down syndrome to parents. For that the personal stories of the mothers collected in the answers given by them to the open questions of a questionnaire on "communication of the diagnosis" are analyzed. The results show the mothers' dissatisfaction with the information received during the prenatal and postnatal diagnosis of Down syndrome
Subject(s)
Humans , Male , Female , Child, Preschool , Adult , Down Syndrome/diagnosis , Mothers/psychology , Professional-Family Relations , Truth Disclosure/ethics , Communication , Cross-Sectional Studies , Self Report , Patient Satisfaction , Surveys and QuestionnairesABSTRACT
The article studies the way in which health professionals communicate the diagnosis of Down syndrome to parents. For that the personal stories of the mothers collected in the answers given by them to the open questions of a questionnaire on â³communication of the diagnosisâ³ are analyzed. The results show the mothers' dissatisfaction with the information received during the prenatal and postnatal diagnosis of Down síndrome.
