To Grasp the Unexpected : Information Following a Prenatal Diagnosis of Congenital Heart Defect in the Fetus

Abstract: The aim was to explore experiences and needs of information following a prenatal diagnosis of congenital heart defect, and to assess the quality of publicly available information websites about congenital heart defects. Study I was a qualitative interview study that explored experiences among 11 parents to prenatally diagnosed children. Respondents tried to grasp the facts today while reflecting on the future, and personal contact with medical specialists was valued. The analysis showed that the Web contained an overwhelming amount of information. Study II was a qualitative interview study that explored experiences among 26 females and males 5-15 weeks after a prenatal diagnosis. Respondents hunted for information in a confusing reality, with a need for information about various topics and methods for information delivery. Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Supplemental information was sought via the Web. Insufficient information about induced abortions was described. Study III was a quantitative study that explored content and quality of 67 English websites about congenital heart defects. Few websites included information about prenatal aspects, such as pregnancy termination. The overall quality was poor, especially reliability and information about treatment choices. Study IV was a mixed methods study that explored the quality of 10 Swedish websites about congenital heart defects, from the perspectives of 9 assessors with personal experience of a prenatal diagnosis. Quantitative Likert scale assessments were followed by written open-ended questions and focus group discussions. Quantitative assessments represented unfulfilled quality criterion for treatment choices, and partially fulfilled quality criteria for appearance, details, relevance, suitability and overall quality. Websites had significantly different scores for all investigated quality criteria. Various issues were highlighted in the responses to the open-ended questions and during the discussions, including inappropriate advertisements, biased information, poor illustrations, complex language and poor trustworthiness. In conclusion, expectant parents faced with a prenatal diagnosis of congenital heart defect in the fetus try to grasp the unexpected, an attempt that involves difficulties in relation to information. These are present during the consultation with health professionals and when searching for web-based information.