O aconselhamento dos familiares após o diagnóstico de cardiopatia congênita do feto: revisão de escopo

Abstract

Introduction: It is estimated that 1 in every 100 babies born alive has some type of congenital heart disease. In Brazil, around 28,900 children are born each year with congenital heart disease (1% of the total). Of these, 80% will need some type of surgical intervention. Early diagnosis, adequate family counseling and good birth planning are factors that favor a better therapeutic outcome. As data on the practice of counseling these family members from diagnosis to birth are sparse in the literature, our objective was to assess and understand the extent of scientific knowledge on family counseling at the time of intrauterine diagnosis, as well as to identify gaps in this field. Methods: This is a scoping review that included primary, quantitative and qualitative studies, and which included characteristics of the participants, sample, study results and the details of counseling such as identification of the professional who provided counseling to family members and the type of family counseling accomplished. The research was conducted according to guidelines found in the Joanna Briggs Institute of Observational Studies in Epidemiology reviewers manual. The search strategy was identified by a systematic search carried out during September and October 2022. Six databases were used: Medline, Embase, Lilacs, Scielo, Scorpus and Web of Science, in addition to the gray literature: Psycinfo and google academic. The project was registered in the records database in the Open Science Framework-OSF. The process of identifying the studies was carried out by two independent reviewers and was divided into phases: identification, screening and inclusion. Analysis of methodological quality and risk of bias were performed using the Joanna Briggs Institute-JBI critical assessment tool. The screening was independent of all articles, initially only based on the title and abstract and, later, based on the full text using the Rayyan system for collection. Results: Of the total of 3719 studies analyzed, twenty-one were included for the analysis. Results:: Of the total of 3719 studies analyzed, twenty-one were included for the analysis. Conclusion: We showed that counseling studies were carried out exclusively in developed countries, which raises questions about this tool in a population with scarce resources. Still, studies can be carried out validating the questionnaires used to identify the degree of parents' understanding of the disease. As well as identifying whether there is a difference in this degree of understanding if the information is passed on by a pediatric cardiologist or a fetal doctor or sonographer. Protocol registration: 10.17605/OSF.IO/7WK45.