Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children

Abstract

BackgroundPrenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD.MethodsSemi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis.ResultsThree themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet.ConclusionEarly and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.

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

“…Consequently, repetition of the provided information results in a more powerful imprint in long‐term memory . Previous studies have concluded that supplemental computerized learning aids, illustrations, and written information increase satisfaction and knowledge and are desired following a prenatal diagnosis . Taken together, the findings underscore the importance to offer repeated and supplemental information following a prenatal diagnosis of CHD.…”

“…This raises concerns about clinical practice regarding information coverage and delivery. Furthermore, the Internet is used to supplement information from the specialist, but this involves searching difficulties, quality deficits, and an overwhelming amount of available information …”

Trends in Congenital Heart Defects in Infants With Down Syndrome

“…Although most cardiac malformations are treatable, complex malformations may contribute to parents' decision to terminate a pregnancy. 30,31 In Sweden, ∼95% of pregnancies are dated by early secondtrimester ultrasound when cardiac malformations can be discovered. 24,32 Fetal echocardiography confirming a heart defect usually leads to antenatal genetic testing, given the high risk of a chromosomal disorder associated with congenital heart defects.…”

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

“…Although the difference was small, websites from the health care system had higher reliability and overall EQIP quality scores. The Web contains an immense number of websites, resulting in an overwhelming amount of information and searching difficulties [14,36,37]. Moreover, it has been shown that consumers of health information use suboptimal search strategies [11] and are unsuccessful at finding satisfactory information on the Web [38].…”