Parents' quality of life and health after treatment decision for a fetus with severe congenital heart defect.

ABSTRACT:

Purpose

This exploratory study examines differences in parents' quality of life by treatment decision and the child's survival outcome in the context of life-threatening congenital heart disease (CHD).

Design and methods

Parents of a fetus or neonate diagnosed with severe CHD enrolled in the observational control group of a clinical trial (NCT04437069) and completed quality of life (i.e., contact with clinicians, social support, partner relationship, state of mind), mental and physical health survey measures. Comparisons were made between parents who chose comfort-directed care or surgery and between those whose child did and did not survive.

Results

Parents who chose surgery and their child did not survive reported the most contact with their clinicians. Parents who

SUBMITTER: Delaney RK 

PROVIDER: S-EPMC10182246 | biostudies-literature | 2023 May-Jun

REPOSITORIES: biostudies-literature