Feasibility and acceptability of prenatal parental palliative care in congenital heart disease: a pilot study
- 1Department of Pediatric Cardiology, Section of Cardiac Critical Care Medicine, University of Alabama at Birmingham, Birmingham, AL USA
- 2School of Nursing, University of Alabama at Birmingham, Birmingham, AL USA
- 3Department of Pediatric Palliative Care Medicine, University of Alabama at Birmingham, Birmingham, AL USA
Abstract
Background: Ductal dependent congenital heart disease (ddCHD) is associated with significant parental anxiety, yet palliative care (PC) support is rarely offered in the prenatal period. While prior studies have evaluated PC postnatally, little is known about feasibility and acceptability of prenatal PC interventions for this population. The purpose of this study is to assess feasibility and acceptability of prenatal PC support sessions (PCSS) for parents whose fetus has been diagnosed with ddCHD requiring neonatal cardiac intervention.
Methods: This prospective single-center feasibility study enrolled English-speaking parents referred to a pediatric cardiology clinic after fetal echocardiographic diagnosis of ddCHD. Eligible participants were offered monthly prenatal PCSS, in person or via videoconference, led by a dual-certified pediatric critical care and hospice/palliative medicine physician. Feasibility was defined as ≥75% session attendance and very/extremely easy scheduling and attendance ratings; acceptability was defined as ≥75% satisfied/very satisfied ratings.
Results: Of 26 eligible parents, 15 (58%) (10 mothers, 5 fathers) consented to participate. Sixteen sessions were scheduled; 14 (87.5%) were attended, with median duration of 42 min. Most sessions (75%) occurred via videoconference. Thirteen participants (86.7%) rated scheduling and attendance as “very easy” or “extremely easy.” All attendees rated the sessions as “satisfied” or “very satisfied.”
Conclusion: Prenatal PC support for families facing a ddCHD diagnosis may be feasible and acceptable, with high rates of participation and satisfaction at a single tertiary care hospital. Larger, multi-center studies are warranted to assess outcomes and develop sustainable models for integrating prenatal PC into congenital heart disease care pathways.
Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s40814-026-01900-z.
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BibTeX
@article{hock2026feasibility,
title = {{Feasibility and acceptability of prenatal parental palliative care in congenital heart disease: a pilot study}},
author = {Kristal M. Hock and Emily Dodenhoff and Matthew G. Clark and Patricia A. Patrician and Wendy Landier and Marti Rice and Liang Shan},
journal = {Pilot and Feasibility Studies},
year = {2026},
month = aug,
doi = {10.1186/s40814-026-01900-z},
url = {https://doi.org/10.1186/s40814-026-01900-z},
note = {CC BY-NC-ND 4.0},
}
RIS
TY - JOUR
TI - Feasibility and acceptability of prenatal parental palliative care in congenital heart disease: a pilot study
AU - Kristal M. Hock
AU - Emily Dodenhoff
AU - Matthew G. Clark
AU - Patricia A. Patrician
AU - Wendy Landier
AU - Marti Rice
AU - Liang Shan
PY - 2026
DA - 2026/08/11
JO - Pilot and Feasibility Studies
DO - 10.1186/s40814-026-01900-z
UR - https://doi.org/10.1186/s40814-026-01900-z
AB - Background: Ductal dependent congenital heart disease (ddCHD) is associated with significant parental anxiety, yet palliative care (PC) support is rarely offered in the prenatal period. While prior studies have evaluated PC postnatally, little is known about feasibility and acceptability of prenatal PC interventions for this population. The purpose of this study is to assess feasibility and acceptability of prenatal PC support sessions (PCSS) for parents whose fetus has been diagnosed with ddCHD requiring neonatal cardiac intervention. Methods: This prospective single-center feasibility study enrolled English-speaking parents referred to a pediatric cardiology clinic after fetal echocardiographic diagnosis of ddCHD. Eligible participants were offered monthly prenatal PCSS, in person or via videoconference, led by a dual-certified pediatric critical care and hospice/palliative medicine physician. Feasibility was defined as ≥75% session attendance and very/extremely easy scheduling and attendance ratings; acceptability was defined as ≥75% satisfied/very satisfied ratings. Results: Of 26 eligible parents, 15 (58%) (10 mothers, 5 fathers) consented to participate. Sixteen sessions were scheduled; 14 (87.5%) were attended, with median duration of 42 min. Most sessions (75%) occurred via videoconference. Thirteen participants (86.7%) rated scheduling and attendance as “very easy” or “extremely easy.” All attendees rated the sessions as “satisfied” or “very satisfied.” Conclusion: Prenatal PC support for families facing a ddCHD diagnosis may be feasible and acceptable, with high rates of participation and satisfaction at a single tertiary care hospital. Larger, multi-center studies are warranted to assess outcomes and develop sustainable models for integrating prenatal PC into congenital heart disease care pathways. Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s40814-026-01900-z.
SN - 2055-5784
ER -