Periviable delivery: An extremely premature delivery that happens between 22 weeks and 25 weeks gestational age
Resuscitation: Life-support measures for the baby, such as a breathing tube, chest compressions, etc.
Comfort care: No interventions to sustain life. Parents can spend time and hold baby as he/she passes away naturally
Partners: People who intend to co-parent the child (i.e., married or non-married, romantic or non-romantic, same-sex or heterosexual).
Making A Difference (MAD) Periviable Ethical Considerations is a research study that targets three participant groups: first-time, expecting parents who are pregnant and within the periviable window, parents who have experienced periviable delivery, and providers who care for periviable deliveries and neonates. Interviews last 1-hour via Zoom and consist of questions that seek to examine whether partners should be involved in neonatal treatment decision-making and who has the final say when both parents disagree on resuscitation or comfort care for their baby.
Provider interviews concluded in December 2021, and qualitative data analysis is expected to be completed by May 2022. Parents from both the experienced and expecting groups are ongoing, with data analysis anticipated to be completed by fall 2022.
To qualitatively investigate pregnant families' views on the possibility of long-term disabilities and death in periviable delivery.
To examine how pregnant people, experienced families, obstetricians, and neonatologists navigate a partner's involvement in decision-making.
Examine how providers navigate disagreements between partners concerning resuscitation
Shared decision-making (SDM) is a primary area of investigation at this research site. The phrase "collaborative deliberation" also describes SDM because it emphasizes the importance of shared communication between the patient and healthcare team rather than a decision being made for the patient by the provider (Elwyn, Frosch, & Kobrin). Therefore, SDM encourages providers to present the options, risks, and benefits to patients while eliciting parents to communicate their values, goals, and preferences to help them make informed neonatal treatment decisions.
With periviable delivery occurring so early in pregnancy, the baby is not fully developed to survive outside of the womb without life-saving interventions. Thus, it has decreased chances of survival. Families must decide between resuscitation and comfort care. This is not a “black-and-white” decision because many factors play a role in what is the best decision for a family. For example, although a family may choose resuscitation, the baby could be too small to survive life-saving attempts or may survive with a range of neurodevelopmental disabilities. As a result, making a complete and informed decision for the baby as a unit is crucial.
When making a complete and informed decision for the baby, the pregnant patient typically is not making this decision alone. They would have their healthcare team and hopefully a partner to share their input and values to decide. This partner's involvement in the decision-making process can drastically affect the dynamic of the decision, particularly if the partners ultimately disagree on a treatment outcome. In shared decision-making, the goal is for patients to make an informed decision with minimal regret and adverse mental health effects. However, when partners disagree, it becomes a difficult decision. Questions are proposed: who has decisional authority over a newborn? Through this research, the role of people outside of the pregnant person is evaluated, along with investigating what providers legally do concerning this perinatal decision-making authority.
Three different participant groups are being interviewed to learn how to support families facing periviable delivery: first-time expecting parents in the periviable window, families who have experienced periviable delivery, and providers. Not only were the pregnant patients interviewed, but their partners were as well. The inclusion of partners aids in determining their possible role in conflicts and learning how providers include partners in decision-making. In total, 150 interviews of ~1-hour will be conducted: 60 expecting partners, 60 experienced partners, and 30 providers.
The parent participants are being recruited primarily through various social media platforms. After viewing an ad, they are asked to click on a link to a screening questionnaire to determine whether they are eligible to participate. Both partners must be 18 years old and speak English or Spanish. Experienced parents must have experienced a periviable delivery, and both parents must be willing to be interviewed. Expecting partners must be first-time parents and be pregnant between 22- and 24-weeks gestation. If interested in participating, eligible candidates were asked to provide contact information so that a member of the research team could follow up and schedule an interview. Parent participants have compensated $50 Amazon gift cards each.
Providers were recruited to participate through prior established collaborations concerning periviability. The research team works alongside 15+ hospitals in a network called “Investigating Neonatal Decisions for Extremely Early Deliveries (INDEED).” The leader of INDEED sent a recruitment email to the network to invite physicians or advanced nurse practitioners in obstetrics or neonatology to participate. Providers were interviewed for 45 minutes via Zoom and received a $100 Amazon gift card for their participation.
Interviews were conducted on Zoom and recorded verbatim. Data is in IU REDCap and is only available to the research team to ensure confidentiality. For analysis purposes, audio recordings are transcribed and de-identified.
The results of MAD can be divided into the provider and parent results:
Providers:
Thirty-two providers were eligible to participate and 30 completed an interview. Out of the total 30, I interviewed eight providers. Data analysis for this participant group is currently underway, with some of the data being reviewed in a manuscript by the Journal of Pediatrics. I did complete the demographics of some key characteristics of the providers:
The average age of the providers was 42 years old, ranging from 30 to 71 years in age.
The providers averaged to be 11.6 years out of residency at the time of the interviews.
47% of the providers were Neonatologists, 20% MFMs, 20% Neonatology Fellows, 10% MFM Fellows, and 3% Nurse Practitioners.
57% of the providers were White/Caucasian, 30% Asian, and 13% multiracial. For ethnicity, 93% identified as non-Hispanic/Latinx.
Parents:
Both parent groups are still being enrolled and interviewed as more eligible partners complete the questionnaire. To date, 69 participant partners have been enrolled in prospective and experienced parent groups combined. I have conducted six parent interviews: 2 being experienced parents and four prospective partners.
These interviews will continue through summer 2022, and data analysis is anticipated in fall 2022.
In the following steps, data collection and analysis will continue. For the provider data, the data will further be qualitatively analyzed, and its completion is anticipated to be in May 2022. For the parents’ participant groups, their enrollment and data analysis will continue to fall 2022.
Elwyn, G., Frosch, D. L., & Kobrin, S. (2016). Implementing shared decision-making: consider all the consequences. Implementation science : IS, 11, 114. https://doi.org/10.1186/s13012-016-0480-9