Mothers perception about information content in Down syndrome diagnosis

Abstract

Objective: To analyze mothers perception about Down Syndrome (DS) diagnosis process, checking the quality of the information. 

Methods: Descriptive investigation with quantitative and qualitative focus, performed in 20 mothers from northeast Brazil through a semi-structured questionnaire. The data was analyzed by softwares SPSS (Stathistical Package for the Social Sciences) and ALCESTE 4.5 (Anatyse Lexicale par Contexte d'un Ensemble de Segments de Texte), for Information Analysis and Thematic Content Analysis. The information was also analyzed quantitatively from categories elaboration. Inside the quantitative focus, the sociodemographic characterization was observed through software SPSS, in order to analyze simple frequency and the software ALCESTE, for the analytic treatment of the interview. The third item of the questionnaire was analyzed only by content analysis, because the number of words from the mothers answers were not enough for treatment by ALCESTE. 

Results: 90% of mothers received Down Syndrome diagnosis after delivery. 75% of cases were reported by pediatricians and 15% by nurses. Mothers said that the diagnosis was performed late, with inadequate and insufficient information and the interviewed mothers felt the same feelings reported in literature: shock, negation, sadness and anger, adaptation and reorganization. 

Conclusions: DS diagnosis was performed lately in the mayority of cases, concordant to Brazilian reality, principally when it concerns less priviledge economical classes. Mothers point that this late diagnosis, unsuitable and insufficient in information, produces feelings that the literature quotes as common: shock, negation, sadness and anger, adaptation and reorganization. In this way, we observed that the news can be a factor that difficult or facilítate the establishment of mother-son link, compromising the resource search for child development.