Extremely preterm birth near the limit of viability, defined broadly as birth between 20
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 both
Maternal Fetal Medicine (MFM) specialists and neonatologists. 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 and potential outcomes such as long-term disability,
and arrive at a mutually agreeable plan for delivery and resuscitation. However, prenatal
counseling may be disjointed or even contradictory. It has been shown that suboptimal
counseling is partially explained by differences in training, practice and perspectives
between the specialties, as well as in framing and unconscious biases, time constraints
and poor communication. Physicians also often emphasize cognitive information versus
parental values when counseling. Preferred language and counseling approaches are largely
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 MFM and
Neonatology providers to improve antenatal counseling. Simulation and enactments are
effective in teaching patient-physician communication, ethical dilemmas in medicine, and
prenatal counseling. This mixed-methods behavioral intervention study will first
determine preferred language and approaches by families, then redefine current training
for prenatal counseling at extreme prematurity by developing and implementing two novel,
interdisciplinary simulation-based educational programs for MFM and Neonatology, focusing
on eliciting values and building partnerships through advanced communication and
relational skills, to improve counseling practices and outcomes.
The overall hypothesis is that family-focused counseling at extreme prematurity by
providers trained in using language and approaches preferred by families will more
effectively address parents' values and preferences central to decision making and
improve counseling practices and outcomes. In this mixed-methods study, the investigators
will enroll ~130 families and their counseling providers from MFM and Neonatology and
compare family-focused counseling outcomes after educational interventions to baseline.
Investigators will collaborate with Family Faculty advisors from study design through
publication to incorporate the parental perspective.
Aim 1a: To determine, via semi-structured interviews of up to 30 families, preferred
language, terminology and approach, including maternal/paternal differences, during
family counseling for impending extremely preterm delivery, following standard
counseling. Aim 1b: To establish baseline understanding, perceptions, decision making,
and anxiety of 50 families and their counseling providers measured via survey, including
the Controlled Preferences Scale-Pediatrics, Decisional Conflict Scale, and State Trait
Anxiety Inventory (STAI). Secondary hypothesis: maternal/paternal preferences for
language, involvement and decision making differ.
Aim 2a: To develop a novel, joint-specialty simulation-based workshop for MFMs and
neonatologists through Boston Children Hospital's (BCH) established Simulation Pediatric
Program and Institute for Professionalism and Ethical Practice (IPEP). Aim 2b: To create
an innovative, multi-media online training module for MFMs and neonatologists through BCH
Simulation Pediatric/IPEP and Open PediatricsTM, a free and globally accessible web-based
teaching platform to enable widespread dissemination. Both products will use preferred
language and approaches from a national survey by investigators (in progress) and Aim 1,
while emphasizing interdisciplinary communication, ethical and relational skills,
addressing biases, and focusing on family values and preferences central to decision
making.
Aim 3: To evaluate whether developed educational interventions improve counseling
practices and outcomes on repeat surveys of 50 families and trained counseling providers
using comparative statistical analyses. Primary hypothesis: counseling by trained
providers will improve parental 1) understanding, 2) perceptions, 3) decision making, and
4) anxiety, by improving communication and more effectively addressing parents' values
and preferences central to decision making. Secondary hypotheses: 1) the online module
will be as effective as the workshop; 2) trained providers will report increased comfort
and decreased anxiety when counseling.
Given the weight of decisions resulting from family counseling for impending extremely
preterm delivery, joint-specialty interventions using preferred language and approach 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 for anticipated extremely preterm deliveries
and counseling outcomes, representing a direct and immediate clinical impact.
