# Optimizing Family Counseling for Anticipated Extremely Preterm Delivery

> **NIH NIH R01** · BOSTON CHILDREN'S HOSPITAL · 2020 · $378,359

## Abstract

Project Summary
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...

## Key facts

- **NIH application ID:** 9897559
- **Project number:** 5R01HD094794-02
- **Recipient organization:** BOSTON CHILDREN'S HOSPITAL
- **Principal Investigator:** Christy Lynn Cummings
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $378,359
- **Award type:** 5
- **Project period:** 2019-03-21 → 2024-02-29

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9897559

## Citation

> US National Institutes of Health, RePORTER application 9897559, Optimizing Family Counseling for Anticipated Extremely Preterm Delivery (5R01HD094794-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9897559. Licensed CC0.

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