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.
AbstractPurposeThis 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 methodsParents 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.
ResultsParents 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.
ConclusionsSome 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 implicationsDecision support tools and bereavement resources to assist parents with making and coping with a complex treatment decision is important for clinical care.
KeywordsCongenital heart defect
Parent quality of life
Decision making
Coping
AbbreviationsCHDCongenital heart defect
View full textPublished by Elsevier Inc.
留言 (0)