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

• Published in: Journal of pediatric nursing 2023-05, Vol.70, p.20-25
• Main Authors: Delaney, Rebecca K., Thorpe, Alistair, Pinto, Nelangi M., Ozanne, Elissa M., Pershing, Mandy L., Hansen, Lisa M., Lambert, Linda M., Tanner, Kirstin, Fagerlin, Angela
• Format: Article
• Language: English
• Subjects: Child; Congenital heart defect; Coping; Decision Making; Fetus; Heart Defects, Congenital - diagnosis; Heart Defects, Congenital - surgery; Humans; Infant, Newborn; Parent quality of life; Parents; Quality of Life; Surveys and Questionnaires
• ISSN: 0882-5963; 1532-8449
• DOI: 10.1016/j.pedn.2023.02.001

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). 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. 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. 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. Decision support tools and bereavement resources to assist parents with making and coping with a complex treatment decision is important for clinical care. •Parents who chose comfort-directed care reported less contact with clinicians.•Parents who chose comfort-directed had less social support and poor state of mind.•Parents who chose surgery (child did not survive) were highly connected with clinicians.•Parents who chose comfort-directed care may need enhanced support and counseling.•Equitable support regardless of treatment decision is needed in clinical care.