Experiences of informational needs and received information following a prenatal diagnosis of congenital heart defect

Abstract

Objective: To explore the need for information and what information was actually received following prenatal diagnosis of a congenital heart defect, in a country where termination of pregnancy beyond 22weeks of gestation is not easily possible because of legal constraints. Methods: Twenty-six Swedish-speaking pregnant women (n=14) and partners (n=12) were consecutively recruited for semi-structured telephone interviews following the prenatal diagnosis of a congenital heart defect. Data were analyzed using content analysis. Results: Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Objective, honest, and detailed information about multiple subjects were needed, delivered repeatedly, and supplemented by written information/illustrations. Eighteen respondents had used the Internet to search for information and identified issues involving searching difficulties, low quality, and that it was too complex, insufficient, or unspecific. Those who terminated their pregnancy criticized that there was a lack of information about termination of pregnancy, both from health professionals and online sources, resulting in unanswered questions and unpreparedness. Conclusion: Individuals faced with a prenatal diagnosis of a congenital heart defect need individualized and repeated information. These needs are not all adequately met, as individuals are satisfied with the specialist consultation but left with unanswered questions regarding pregnancy termination. What's Already Known About This Topic? The introduction of ultrasound screening during the second trimester of pregnancy has increased the detection rate of major congenital heart defects. Information matched to individual needs is crucial for women to cope with the situation following a prenatal diagnosis. What Does This Study Add? There is a need for information on multiple subjects following the prenatal diagnosis of congenital heart defect, including termination of pregnancy. Although information is available on the Internet on congenital heart defects, it is not easily searchable and its quality may be less than desired. Apparently, there is insufficient information about termination of pregnancy following the prenatal diagnosis of congenital heart defect.