Delaney, Rebecca K;
Thorpe, Alistair;
Pinto, Nelangi M;
Ozanne, Elissa M;
Pershing, Mandy L;
Hansen, Lisa M;
Lambert, Linda M;
... Fagerlin, Angela; + view all
(2023)
Parents' quality of life and health after treatment decision for a fetus with severe congenital heart defect.
Journal of Pediatric Nursing
, 70
pp. 20-25.
10.1016/j.pedn.2023.02.001.
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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.
| Type: | Article |
|---|---|
| Title: | Parents' quality of life and health after treatment decision for a fetus with severe congenital heart defect |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1016/j.pedn.2023.02.001 |
| Publisher version: | https://doi.org/10.1016/j.pedn.2023.02.001 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | Congenital heart defect, Parent quality of life, Decision making, Coping |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Applied Health Research |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10170476 |
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