TERESA VARGAS ALDECOA

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.

Comunicar o recibir la noticia de diagnostico prenatal o postnatal de sindrome de Down no es una experiencia sencilla, ni para las madres ni para los medicos, tal y como se concluyo en el estudio llevado a cabo por Skotko y Canal en el ano 2002. A raiz de dicho estudio se quiso comprobar si se habia producido un cambio en la conducta de los profesionales sanitarios a lo largo de los anos, teniendo en cuenta las recomendaciones aportadas por los autores sobre como dar malas noticias. Asi mismo, se planteo estudiar el influjo que la Ley Organica 2/2010 habia producido en el aumento de aplicacion de pruebas de diagnostico prenatal y si ese incremento conllevaba una mejora en todo el proceso de comunicacion del diagnostico prenatal y postnatal de sindrome de Down. Por ultimo se quiso conocer las percepciones de las madres sobre su experiencia durante todo el proceso de comunicacion del diagnostico prenatal y postnatal de sindrome de Down. Para eso 352 madres de ninos con sindrome de Dow...

espanolLa comunicacion del diagnostico de sindrome de Down tiene serias implicaciones eticas ya que la finalidad del mismo puede ser eugenesica o terapeutica. El objetivo de este articulo es, por un lado, resaltar el papel fundamental que desempenan los profesionales sanitarios en la comunicacion del diagnostico y la posterior decision de la madre. Por otra parte, se exponen las recomendaciones sobre la manera de comunicar un diagnostico. Por ultimo, se analiza el estado de la cuestion en Espana, 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 conclusion a la que se llega es que la comunicacion del diagnostico de sindrome de Down se puede mejorar en muchos aspectos. EnglishDown Syndrome diagnosis communication has got serious ethical implications, since the aim thereof can be either eugenic or therapeutic. The purpose...

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 sindrome.

espanolEl articulo estudia la manera en la que los profesionales sanitarios comunican el diagnostico de sindrome de Down a los padres. Para eso se analizan los relatos personales de las madres recogidos en las respuestas dadas por aquellas a las preguntas abiertas de un cuestionario sobre “comunicacion del diagnostico”. Los resultados muestran la insatisfaccion de las madres ante la informacion recibida durante el diagnostico prenatal y postnatal de sindrome de Down. EnglishThe 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.

The Annapolis Conference on Behavioral Health Workforce Education and Training was convened in September 2001 to address the relevance and quality of efforts to educate those who provide mental health and addiction services. It was essential that students, as the consumers of educational programs, be represented in the dialogue. Four students and one recent graduate joined a diverse group in Annapolis, which included professionals, administrators, educators, consumers of behavioral health services, and family members. The students who attended were drawn from the professions of psychiatry, psychology, social work, and nursing. In a series of personal narratives, these individuals present their views on the conference, on education and training, and on the behavioral health field in general.