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

Abstract

ObjectiveTo 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 22 weeks of gestation is not easily possible because of legal constraints.MethodsTwenty‐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.ResultsAlthough 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.ConclusionIndividuals 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. © 2016 The Authors. Prenatal Diagnosis published by John Wiley & Sons, Ltd.

Patient Information Websites About Medically Induced Second-Trimester Abortions: A Descriptive Study of Quality, Suitability, and Issues

“…To deal with their difficult situation, they have a great need for information and support [15-18]. Preparatory information is an indicator of quality abortion care, and the literature suggests that women should always be offered sufficient information before the procedure [20].…”

“…Preparatory information is an indicator of quality abortion care, and the literature suggests that women should always be offered sufficient information before the procedure [20]. However, people who undergo the procedure describe that they feel insufficiently informed about it, resulting in unanswered questions and unpreparedness [15-18]. To feel adequately prepared and well-informed, they search the Web for supplemental information about pregnancy terminations [17,18,21].…”

“…However, people who undergo the procedure describe that they feel insufficiently informed about it, resulting in unanswered questions and unpreparedness [15-18]. To feel adequately prepared and well-informed, they search the Web for supplemental information about pregnancy terminations [17,18,21]. However, inductive qualitative research indicates issues with searching difficulties and poor website quality [18], calling attention to the need for systematic investigations that draw more generalizable conclusions.…”

“…To feel adequately prepared and well-informed, they search the Web for supplemental information about pregnancy terminations [17,18,21]. However, inductive qualitative research indicates issues with searching difficulties and poor website quality [18], calling attention to the need for systematic investigations that draw more generalizable conclusions. Previous investigations on websites about abortions have shown that some of these websites include medical inaccuracies and misleading information [22-24], for example, erroneous claims about associations between abortion and mental health risks, preterm births, breast cancer, and infertility [22,24].…”

Quality of web pages about second‐trimester medical abortion: A cross‐sectional study of readability, comprehensiveness, and transparency

“…To feel adequately prepared and in control of their situation, patients seek out information before undergoing the procedure (Lafarge, Mitchell, & Fox, ). Indeed, studies have consistently shown that patients who undergo medical abortion in the second trimester of pregnancy have substantial needs for information before, during, and after the abortion process (Andersson, Christensson, & Gemzell‐Danielsson, ; Carlsson, Bergman, Karlsson, Wadensten, & Mattsson, ; Carlsson, Bergman, Wadensten, & Mattsson, ; Hunt, France, Ziebland, Field, & Wyke, ; Lafarge et al, ; Mukkavaara, Öhrling, & Lindberg, ). Health professionals who work with abortions regard preparatory information as an essential aspect of care (Gould, Perrucci, Barar, Sinkford, & Foster, ), and appropriate patient information is acknowledged in the literature as a decisive factor in order to achieve high‐quality abortion care (Dennis, Blanchard, & Bessenaar, ).…”