Key result
In 42 interviews with 27 individuals facing a fetal diagnosis of severe congenital heart disease, uncertainty was identified as a pervasive central theme regarding logistics and long-term prognosis.
Why the study?
Parents receiving a prenatal congenital heart disease diagnosis may experience high stress, and understanding their longitudinal emotional experience is needed to identify interventions to improve support.
Population
27 individuals from 17 families referred for likely fetal complex congenital heart disease
Design
Qualitative interview study
Authors
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Clinicians should integrate uncertainty discussions into fetal CHD counseling; leaves open targeted interventions and prospective validation.
Following a fetal diagnosis of severe congenital heart disease, families experience pervasive uncertainty, highlighting the need for improved expectation setting, communication, and support.
Harris et al. (2020) studied Congenital heart disease (n=27). Prenatal diagnosis of severe congenital heart disease was evaluated on Parents' accounts of their prenatal experience, stressful aspects, and strategies to improve support. In 42 interviews with 27 individuals facing a fetal diagnosis of severe congenital heart disease, uncertainty was identified as a pervasive central theme regarding logistics and long-term prognosis.
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