Parents' quality of life and health after treatment decision for a fetus with severe congenital heart defect.
Rebecca K Delaney, Alistair Thorpe, Nelangi M Pinto and 6 others
PMID 36791586WHAT IT FOUND
Parents who chose comfort-directed care for a fetus or neonate with severe congenital heart defect reported less social support and poorer state of mind than parents who chose surgery at 3 months.
These small, exploratory differences are not proof of harm.
Key findings
01Parents whose child did not survive after surgery reported higher contact with clinicians than parents whose child survived after surgery and than parents who chose comfort-directed care.
02Parents who chose comfort-directed care reported lower social network support than parents who chose surgery and whose child did not survive.
03Parents who chose comfort-directed care reported poorer state of mind than parents who chose surgery overall and than parents whose child survived after surgery.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 23 parents were analysed, and no formal statistical comparisons were conducted, so the differences are directional and may not be real. The study was single-site and the condition is rare, so the sample may not represent all families. 11 of 35 enrolled parents did not complete the survey and 1 was excluded, so the analysed group may differ from all parents. The sample was mostly female, non-Hispanic White, married, and had some college education, so it may not generalise to other groups. No parents chose termination, so the study cannot say how that decision affects parents. Data were collected only at 3 months, so it cannot show longer-term effects on parents' health or quality of life. The contact with clinicians measure did not specify which clinician or when contact occurred. The fear and anxiety domain was excluded because it was only relevant if the child survived.
The easy way to misread this
Do not read the lower social support and poorer state of mind as proof that comfort-directed care harms parents. The study had 23 parents, made no formal statistical comparisons, and only reported directional confidence intervals, so these differences may not be real. It also had no parents who chose termination.