Abstract
Having a child with Down syndrome (DS) is usually unexpected and stressful.To describe the experiences of parents of children with DS at the time of diagnosis.A self-administered survey was answered by 345 parents (62% women) with an offspring with DS.Eighty four percent of parents received a postnatal diagnosis of DS, 32.3% were informed of the diagnosis in the presence of his or her partner and 19.3%o received some form of printed material regarding DS. Fifty six percent of respondents considered that the delivery of the diagnosis was inadequate. Factors associated with an overall positive experience were prenatal diagnosis (Odds Ratio (OR) 3.91 (95% Confidence Intervals (CI) 2.06-7.44)) and the presence of both parents at the time of the delivery of the diagnosis (OR 1.84 (95%> CI 1.16-2.91)). Fifty three percent of respondents believe that prenatal diagnosis of DS is preferable.The majority of parents are unsatisfied with the way the diagnosis of DS is delivered. Efforts should be made to educate health personnel regarding the delivery of the diagnosis of SD, to foster opportunities for prenatal diagnosis and to improve the delivery of printed material.
Highlights
Having a child with Down syndrome (DS) is usually unexpected and stressful
Se excluyeron a aquellos encuestados que refirieron recordar el momento en que recibieron la noticia del diagnóstico de sus hijo/as en menos de 50% y aquellas encuestas respondidas en menos de 80%
Ministerio de Salud, Subsecretaría de Salud Pública, Santiago, Chile, 24 de abril de 2012
Summary
Having a child with Down syndrome (DS) is usually unexpected and stressful. Aim: To describe the experiences of parents of children with DS at the time of diagnosis. Factors associated with an overall positive experience were prenatal diagnosis (Odds Ratio (OR) 3.91 (95% Confidence Intervals (CI) 2.06-7.44)) and the presence of both parents at the time of the delivery of the diagnosis (OR 1.84 (95% CI 1.16-2.91)). El interés de la comunidad científica respecto a la entrega del diagnóstico de SD ha motivado diversos estudios, los que concuerdan en que las madres se encuentran insatisfechas con la entrega de la noticia[12,13], sólo una minoría evalúa la experiencia como positiva[8,9]. A. Paul et al aborto; creemos relevante conocer la opinión de madres y padres en un país con alta prevalencia de SD y sin aborto, donde el diagnóstico prenatal no determinará la continuación del embarazo
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