Date of Defense:
May 13, 2020
Introduction. Stillbirth research has yet to provide an explanation for the majority of stillbirths. According to the National Institute of Health, as many as 50% of stillbirths have unknown causes (NIH, 2011). Stillbirth is defined as a fetal death at 20 weeks of gestational age or older in Minnesota. In other states, stillbirths may be defined differently. Through research, we see that there is a significant racial disparity in the women who experience stillbirth. In public health we strive to promote healthy lifestyles, prevent disease, and prolong life. This is a public health concern because underrepresented mothers and children are at higher risk of experiencing poorer health outcomes; including death. Although underrepresented women are at higher risk of experiencing stillbirths, anyone can experience a stillbirth.
Experience. I had the privilege to work at the Star Legacy Foundation as the Research Disparity Intern for the Pregnancy Research Project. The Pregnancy Research Project is a study designed to work like a database, so that other researchers may use the data to conduct more research without the time and resources of recruiting a new data set. This project includes a maternal survey which contains about 50 questions regarding the mothers’ pregnancy experience. Participants are also asked to release prenatal and delivery records.
My responsibilities included analyzing state and national stillbirth data, to identify target communities for enrollment in the Pregnancy Research Project by utilizing the CDC Wonder Database and coordinating with other state health departments; connecting with community experts and researchers to guide project enrollment; and assisting the executive director in developing a partnership plan with individuals and organizations in the state and within target communities. My learning objectives were to (1) explore and apply methods of working effectively with communities or special populations within the community and (2) participate in evaluating research disparities within Maternal and Child Health (MCH) research studies. I was able to achieve both of these objectives by interning at a non-profit organization that works with MCH and underrepresented populations, assisting in the evaluation of research disparities within MCH research studies, interviewing community experts regarding their experiences working with diverse populations, and coordinating with other state and federal health agencies to retrieve data for analysis.
The data that I analyzed were state and national data on stillbirth rates. This included maternal race, maternal age, gestational age at stillbirth, and the mother’s county of residence. I spent a portion of my time calculating fetal death rates (fetal deaths per 1,000 live births) using raw data sheets retrieved from contacting state health departments and using online state reports. The equation that I used to calculate fetal death was:
Fetal Death per 1,000 Live Births=(# of Fetal Deaths)(# of Fetal Deaths+# of Live Births) x 1,000
In addition, I had the privilege of interviewing three community experts who work with diverse communities in Minnesota. I interviewed Karla Decker-Sorby, who is the American Indian Nurse Liaison for the Family Home Visiting Program at the Minnesota Department of Health; Michelle Chiezah, who is the Infant Mortality Consultant at the Minnesota Department of Health; and Dr. Kathleen Culhane-Pera, who is a family medicine physician at West Side Family Clinic and has over 30 years of community based research experience with underrepresented communities.
Organization. “The Star Legacy Foundation is a 501©3 non-profit organization dedicated to reducing pregnancy loss and neonatal death and improving care for families who experience such tragedies,” (Star Legacy Foundation, 2019). The foundation is made up of families, health professionals, researchers, and policy makers. The organization’s mission is “to increase awareness, support research, promote education, and encourage advocacy and family support regarding stillbirth, pregnancy loss, and neonatal death,” (Star Legacy Foundation, 2019). Their vision is “that through the utilization of technology, education, grassroots efforts, and partnership, we can empower families and health professionals to identify and protect vulnerable babies,” (Star Legacy Foundation, 2019). My field experience fit in very well with the organization’s mission because we both have goals to support research. This organization also allowed me to utilize skills I learned in course work to analyze data in MCH related topics.
Results. As a result of analyzing state demographic data for women experiencing stillbirths, I found that the overall stillbirth rate for the state of Minnesota was 5.5 stillbirths per 1,000 live births in 2017. American Indian women experienced the highest rate of stillbirth at 9.1 stillbirths per 1,000 live births, followed by African American/Black women experiencing 8.5 stillbirths per 1,000 live births, Asian women experienced 4.9 stillbirths per 1,000 live births, White women experienced 4.4 stillbirths per 1,000 live births and Hispanic women experienced the lowest rate of stillbirths at 4.1 stillbirths per 1,000 live births. This data helped to identify target communities for enrollment into the Pregnancy Research Project to ensure that the most vulnerable populations are represented in the study.
Lessons Learned. I learned many things about the stillbirth field and the racial disparities that women experience with stillbirths. As a woman who has never been pregnant and thus has never lost a child, I could not begin to understand the complexity and sorrow of losing a child to stillbirth. After this experience, I can say that I am able to acknowledge and understand what hardships women and children continue to endure and how I can contribute in moving the needle towards improvement of maternal and child health. In addition, I learned some research tips, including the difficulty and complexity of providing incentives for participating in a study that could potentially be re-traumatizing and triggering. This led to my realization of how important funding sources are and how it plays a part in how you plan and execute your project (i.e. providing incentives or not). I also realized the importance of using evidence based and validated tools and methods to conduct your research. Finally, I received many tips from my interviewees in regard to engaging the community in research. I learned that if we want to effectively engage the community, we must start early, and we must work with the communities through each step of the process. We also must not make assumptions about the communities we work with and we should build partnerships with trusted community organizations.
Recommendations. One recommendation that I learned from this field experience and that I have for the organization is to be intentional in the work you do with underrepresented communities and to work with those communities to develop a research project that is culturally accepted. All of the community experts that I interviewed expressed concerns regarding the format of the research study and how it may not accommodate the cultural preferences or may not meet the best practices for working with those populations.
Conclusion. Stillbirth affects women all over the world and communities of color continue to be at higher risk of experiencing stillbirths. This field experience was able to shed light onto the magnitude of stillbirth in Minnesota women and how we might work with them to contribute to stillbirth research and address the racial disparity in stillbirths.
National Institute of Heath. (2011). Most Stillbirths Caused by Placental, Pregnancy Conditions. Retrieved from https://www.nih.gov/news-events/nih-research-matters/most-stillbirths-caused-placental-pregnancy-conditions.
The Star Legacy Foundation. (2019). About Us. Retrieved from https://starlegacyfoundation.org/about-us/.