Advisor(s)

Patricia Patrician

Committee Member(s)

Laura Brosch
Liang Shan
Marti Rice
Wendy Landier

Document Type

Dissertation

Date of Award

1-28-2026

Degree Name

Doctor of Philosophy (PhD)

School

School of Nursing

Department

Nursing

Abstract

The purpose of this dissertation was to explore the complexities of the informed consent (IC) process in the context of neonatal cardiac interventions, with a focus on parental knowledge and anxiety during decision-making. Across three manuscripts, this work examined conceptual dimensions, feasibility, and acceptability of a new prenatal treatment (palliative care (PC) support sessions), and the effect sizes of this new treatment on parental knowledge and anxiety levels surrounding the IC discussion for neonatal cardiac palliations. The first manuscript employed dimensional analysis to conduct a concept analysis of IC in surgical care. The review of 27 publications revealed three distinct yet interconnected perspectives: legal, health care provider, and patient. While the legal perspective emphasizes compliance and documentation, the provider perspective incorporates professional goals, and the patient perspective extends beyond hospitalization to encompass long-term values and family-centered outcomes. This analysis highlighted the multidimensional and often divergent priorities inherent in the IC process. The second manuscript reported findings from a prospective single-center feasibility study of prenatal PC support for families facing a fetal diagnosis of ductal-dependent congenital heart disease (ddCHD). Of 26 eligible parents, 15 (58%) (10 mothers, 5 fathers) enrolled, and 16 sessions were scheduled. Fourteen sessions (87.5%) were attended, with a median duration of 42 minutes; 75% occurred via videoconference. Thirteen participants (86.7%) rated scheduling and attendance as “very easy” or “extremely easy,” and all attendees rated the sessions as “satisfied” or “very satisfied.” These findings demonstrate feasibility and acceptability of integrating prenatal PC support into CHD care pathways. The third manuscript described a single-center, prospective pilot study evaluating the impact of prenatal PC support on parental anxiety and knowledge during the IC discussion for neonatal cardiac interventions. Thirty parents were enrolled, and 27 completed all study procedures. Seventeen parents received routine prenatal standard of care, the questionnaire only (QO) cohort, and 10 parents received prenatal palliative care (PC) support sessions and completed all study questionnaires (the PC + QO cohort). Anxiety was measured using the State-Trait Anxiety Inventory and knowledge was measured with the Cardiac Surgery Knowledge Test. Effect size analyses showed higher pre-IC (95.6 ± 10.1 vs. 77.6 + 25.6, d = –0.86) and post-IC (98.8 + 3.5 vs 84.1 + 24.4, d= -0.76) knowledge scores in the PC + QO group. There was a higher change in state anxiety from pre- to post-IC in the QO (–2.0 ± 7.1) vs. PC + QO (0.7 ± 4.8) with a small to medium effect size (d = –0.45). Collectively, these manuscripts provide new insights into the IC process for neonatal cardiac interventions and suggest that prenatal PC support may be feasible, acceptable, and may improve baseline parental knowledge. Findings underscore the need for larger studies to confirm these effects and to guide integration of prenatal PC into CHD care to better support families making highly complex decisions.

Keywords

Congenital Heart Disease;Neonatal Cardiac Surgery;Palliative Care Support Services;Parental Anxiety;Parental Knowledge;Surgical Informed Consent

ProQuest Publication Number

32282574

ISBN

9798273381148

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