Parents’ Psychological and Decision-Making Outcomes following Prenatal Diagnosis with Complex Congenital Heart Defect: An Exploratory Study
Authors: Thorpe Alistair , Delaney Rebecca K. , Pinto Nelangi M. , Ozanne Elissa M. , Pershing Mandy L. , Hansen Lisa M. , Lambert Linda M. , Fagerlin Angela 
Published: October 2023

Background. Parents with a fetus diagnosed with a complex congenital heart defect (CHD) are at high risk of negative psychological outcomes. Purpose. To explore whether parents’ psychological and decision-making outcomes differed based on their treatment decision and fetus/neonate survival status. Methods. We prospectively enrolled parents with a fetus diagnosed with a complex, life-threatening CHD from September 2018 to December 2020. We tested whether parents’ psychological and decision-making outcomes 3 months posttreatment differed by treatment choice and survival status. Results. Our sample included 23 parents (average Age[years]: 27 ± 4, range = 21–37). Most were women ( n = 18), non-Hispanic White ( n = 20), and married ( n = 21). Most parents chose surgery ( n = 16), with 11 children surviving to the time of the survey; remaining parents ( n = 7) chose comfort-directed care. Parents who chose comfort-directed care reported higher distress ([Formula: see text] = 1.51, s = 0.75 v. [Formula: see text] = 0.74, s = 0.55; Mdifference = 0.77, 95% confidence interval [CI], 0.05–1.48) and perinatal grief ([Formula: see text] = 91.86, s = 22.96 v. [Formula: see text] = 63.38, s = 20.15; Mdifference = 27.18, 95% CI, 6.20–48.16) than parents who chose surgery, regardless of survival status. Parents who chose comfort-directed care reported higher depression ([Formula: see text] = 1.64, s = 0.95 v. [Formula: see text] = 0.65, s = 0.49; Mdifference = 0.99, 95% CI, 0.10–1.88) than parents whose child survived following surgery. Parents choosing comfort-directed care reported higher regret ([Formula: see text] = 26.43, s = 8.02 v. [Formula: see text] = 5.00, s = 7.07; Mdifference = 21.43, 95% CI, 11.59–31.27) and decisional conflict ([Formula: see text] = 20.98, s = 10.00 v. [Formula: see text] = 3.44, s = 4.74; Mdifference = 17.54, 95% CI; 7.75–27.34) than parents whose child had not survived following surgery. Parents whose child survived following surgery reported lower grief (Mdifference = −19.71; 95% CI, −39.41 to −0.01) than parents whose child had not. Conclusions. The results highlight the potential for interventions and care tailored to parents’ treatment decisions and outcomes to support parental coping and well-being. Highlights Question: Do the psychological and decision-making outcomes of parents differ based on their treatment decision and survival outcome following prenatal diagnosis with complex CHD? Findings: In this exploratory study, parents who decided to pursue comfort-directed care after a prenatal diagnosis reported higher levels of psychological distress and grief as well as higher decisional conflict and regret than parents who decided to pursue surgery. Meaning: The findings from this exploratory study highlight potential differences in parents’ psychological and decision-making outcomes following a diagnosis of complex CHD for their fetus, which appear to relate to the treatment approach and the treatment outcome and may require tailoring of psychological and decision support.