Extremely preterm birth, defined as birth between 22 and 26 weeks' gestation, accounts for substantial infant morbidity and mortality, as well as both parental and provider distress. Prenatal counseling for families anticipating extremely preterm delivery remains ethically and practically challenging for maternal-fetal medicine (MFM) physicians and neonatologists alike. Physicians must quickly establish a trusting relationship with families and convey complex medical information. They must sensitively elicit family preferences and values regarding life and death, carefully explain management options including potential outcomes such as long-term disability, and arrive at a mutually agreeable plan for delivery and resuscitation. Prenatal counseling may sometimes be disjointed, conflicting or even contradictory. We have shown this can be due in part to differences in training, practice and perspectives between the specialties, as well as differences in framing and unconscious biases, time constraints and poor communication. Physicians often emphasize cognitive information versus parental values. Further, preferred terminology and counseling approaches are unknown. This can lead to poor family understanding, inadequate shared decision making, decreased satisfaction and increased anxiety. There is a need to determine best approaches using language and terminology preferred by families, not physicians. There is also a need to develop new methods to educate providers in MFM and Neonatology to improve antenatal counseling practices. Simulation has been shown to be effective in teaching patient-physician communication, ethical dilemmas in medicine, and prenatal counseling. We propose to first determine language and counseling approaches preferred by families, and then redefine current training for prenatal counseling at periviability by developing and implementing two novel, interdisciplinary simulation- based educational programs targeted at providers from both MFM and Neonatology, focusing on eliciting values and building partnerships through advanced communication and relational skills. Our overall hypothesis is that family-focused counseling at periviability, using language and approaches preferred by families, will more effectively address parental values and preferences central to decision making and improve counseling practices and outcomes. To accomplish this, we will enroll families and their counseling providers from MFM and Neonatology in this mixed-methods study and compare counseling outcomes after educational interventions to baseline. We will collaborate with Family Faculty advisors from study design to publication to incorporate the parental perspective. Given the weight of decisions resulting from counseling for impending extremely preterm delivery, joint-specialty interventions using preferred language and approaches to optimize counseling are urgently needed. These innovative educational interventions present a feasible and effective approach that can be widely disseminated to improve interdisciplinary family-focused counseling practices and outcomes for anticipated periviable deliveries, representing a direct and immediate clinical impact.

Public Health Relevance

Antenatal family counseling for anticipated extremely preterm deliveries remains ethically and practically challenging for maternal-fetal medicine specialists and neonatologists alike. The overall goal of this project is to improve antenatal counseling and counseling outcomes for families facing anticipated extremely preterm delivery through innovative, interdisciplinary simulation-based education for maternal fetal medicine specialists and neonatologists, using language preferred by families, and focusing on eliciting values and building partnerships through advanced communication and relational skills.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Research Project (R01)
Project #
1R01HD094794-01A1
Application #
9660044
Study Section
National Institute of Child Health and Human Development Initial Review Group (CHHD)
Program Officer
Davis, Maurice
Project Start
2019-03-21
Project End
2024-02-29
Budget Start
2019-03-21
Budget End
2020-02-29
Support Year
1
Fiscal Year
2019
Total Cost
Indirect Cost
Name
Boston Children's Hospital
Department
Type
DUNS #
076593722
City
Boston
State
MA
Country
United States
Zip Code