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Observational Study
. 2023 May-Jun:70:20-25.
doi: 10.1016/j.pedn.2023.02.001. Epub 2023 Feb 13.

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

Rebecca K Delaney  1 , Alistair Thorpe  2 , Nelangi M Pinto  3 , Elissa M Ozanne  2 , Mandy L Pershing  2 , Lisa M Hansen  3 , Linda M Lambert  3 , Kirstin Tanner  2 , Angela Fagerlin  4
Affiliations
Observational Study

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

Rebecca K Delaney et al. J Pediatr Nurs. 2023 May-Jun.

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 chose comfort-directed care reported lower social support than parents who chose surgery and their child did not survive as well as poorer state of mind compared to parents who chose surgery.

Conclusions: Some aspects of parents' quality of life differed based on their treatment decision. Parents who choose comfort-directed care are vulnerable to some negative outcomes.

Practice implications: Decision support tools and bereavement resources to assist parents with making and coping with a complex treatment decision is important for clinical care.

Keywords: Congenital heart defect; Coping; Decision making; Parent quality of life.

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Conflict of interest statement

Declaration of Competing Interest The authors have indicated they have no financial relationships and no potential conflicts of interest relevant to this article to disclose.

Figures

Figure 1.
Figure 1.
Consort diagram for study recruitment, enrollment, and final analytic sample. Note. Plus-minus values are means °SD; 95% Confidence Intervals which do not include zero are emphasized with bolded text; ICCAP=impact of a child with congenital anomalies on Parents, SF-12=short-form 12-item health survey.
See this image and copyright information in PMC

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