ASK A RESEARCHER

October 2020

An Introduction to the North Dakota Study of Associated Risks of Stillbirth (SOARS)

The North Dakota Department of Health and the Center for Social Research (CSR) at North Dakota State University (NDSU) continue their collaboration of working together in a new project that focuses on gathering information from mothers who have lost a baby to stillbirth to improve future outcomes. Kendra Erickson-Dockter is a research specialist with the CSR and provides substantial support to the North Dakota Study of Associated Risks of Stillbirth (SOARS) project. Kendra received her master’s degree in Sociology and is a doctoral student in Human Development at NDSU. Chelsey Hukriede is a research specialist at the CSR and serves as the Project Coordinator for two statewide surveillance projects, North Dakota Pregnancy Risk Assessment Monitoring System (PRAMS) and SOARS. Chelsey earned her master’s degree in Sociology from the University of North Dakota. Grace Njau is the Director of Special Projects at the North Dakota Department of Health and serves as the Principal Investigator of North Dakota SOARS. Grace received her master’s degree at the University of Colorado and is a doctoral candidate at the University of Tennessee.

October is Pregnancy and Infant Loss Awareness Month. In this article, the authors present a new study that will contribute to the research, education and prevention efforts which may ultimately reduce the incidence of these tragedies.

Background

Most pregnancies end with a healthy baby to take home; however, there are also pregnancies that end in the loss of a baby, whether through miscarriage or stillbirth. Both miscarriage and stillbirth are considered a pregnancy loss but are differentiated based on the gestational age of the baby. Typically, a miscarriage is defined as loss of a baby before the 20th week of pregnancy, and a stillbirth is loss of a baby after 20 weeks of pregnancy. A stillbirth refers to the death of a baby before or during delivery (Centers for Disease Control and Prevention).

According to the Centers for Disease Control and Prevention (CDC), stillbirth affects about 1 in 160 births (6.25 per 1000 births), and each year about 24,000 babies are stillborn in the United States. That is about the same number of babies that die during the first year of life and it is more than 10 times as many deaths as the number that occur from Sudden Infant Death Syndrome (SIDS). Specifically, in North Dakota overall, the stillbirth rate is 6 per 1000 live births. In 2018, stillbirth numbers in North Dakota surpassed the number of infant mortality (babies that die in the first year of life) cases (60 compared to 54 cases, respectively). Additionally, minority women are disproportionately affected by stillbirths. For instance, the stillborn rate per 1000 live births is 5.11 for white women, compared to 9.15 for American Indian women and 6.71 for women of other races.

Unfortunately, the loss of a baby due to stillbirth continues to be a heartbreaking reality for many families and takes a significant toll on families’ health and well-being, in the United States and in North Dakota communities as well. To gain knowledge about the potential causes of stillbirth, the North Dakota Department of Health and the North Dakota Department of Human Services are sponsoring a public health surveillance project. The information collected can be used to develop recommendations, policies, and services to help prevent stillbirth and provide support for families. The surveillance project is called the Study of Associated Risks of Stillbirth (SOARS) and will be implemented by the North Dakota State University Center for Social Research. North Dakota is among a few states that is implementing SOARS, which will add to and fill the gap related to information from women who have a pregnancy that results in the loss of a baby (stillbirth).

This is not the first collaboration for the Center for Social Research and the North Dakota Department of Health. These entities have a long history of working together to improve the health of North Dakotans. Currently, the North Dakota Department of Health, the Centers for Disease Control and Prevention, and Center for Social Research are collaboratively conducting the Pregnancy Risk Assessment Monitoring System (PRAMS). PRAMS was initiated with the overall goal of reducing infant morbidity and mortality. It is the only surveillance system that provides data about pregnancy and the infants’ first few months after birth. PRAMS is especially useful in identifying women and infants at high risk for health problems, for monitoring changes in health status, and in measuring progress toward goals for improving the health of mothers and infants. The new SOARS project uses the experience and expertise in conducting PRAMS to get this new information to improve outcomes.

SOARS Specifics

SOARS is an on-going, state-specific, population-based survey which has been designed to collect data on maternal behaviors and experiences, prior to, during, and immediately following pregnancy among mothers who have recently experienced a stillbirth. Stillbirth, for the purposes of this project, is defined as the in-utero death of a baby at 20 weeks of pregnancy or later. North Dakota SOARS initiated in 2020 to help health officials learn more about why stillbirths occur. The understanding of potential causes of stillbirth will lead to recommendations, policies and services to help prevent them in the future.

SOARS is important because it will provide data that is not available in medical records or on fetal death certificates. The information learned from these surveys will assist in identifying women who are high risk for stillbirth, monitor risk factors, and identify potential areas for prevention. This project will also assist in monitoring progress towards goals in reducing the rates of stillbirth in North Dakota.

The SOARS Survey

The survey was designed using lessons learned and information shared from Utah SOARS (the first SOARS project in the U.S.). Survey topics were also developed using literature review, stillbirth experiences, and the PRAMS surveillance project, in addition to input from an Advisory Committee. The Advisory Committee is made up of individuals from a variety of organizations and specialties: Maternal and Fetal Medicine, North Dakota Department of Health, North Dakota Legislature, North Dakota Office of the Tax Commissioner, North Dakota State University, Perinatal Behavioral Health, and Vital Records.

The survey questionnaire consists of questions that are specific to North Dakota’s data needs. The survey covers the following topics and more:

  • Prenatal and postnatal care
  • Social support and stress
  • Grief and bereavement support
  • Services offered by hospitals after a stillbirth occurs
  • Tests that may have been offered after the stillbirth
  • Use of alcohol, tobacco, e-cigarettes, and opioids
  • Physical abuse
  • Chronic health conditions of the mother
  • Health insurance coverage

The survey was also designed to collect information on emerging issues (e.g., COVID-19), special projects (e.g., Count the Kicks), and North Dakota specific topics (e.g., Stillborn Tax Credit).

SOARS Logistics

The SOARS survey launched mid-September 2020. To implement the SOARS survey in North Dakota, each month, the addresses for all North Dakota women who experienced a stillbirth in the previous two to four months will be obtained from vital records and fetal death certificate data. The Center for Social Research will send each of these women an introductory letter that includes condolences, information about the ND SOARS project, and asking for their future participation. Following the introductory letter, a survey packet is sent to each woman. The survey packet includes: the paper survey booklet, a letter detailing the project and access to an online version of the survey, a unique resource list to available North Dakota programs and resources, and an important information page explaining their informed consent and more details of the ND SOARS project. A small necklace, in remembrance of their baby, is also included in the packet as an incentive for participation and to express condolences for their loss. Two weeks following the first survey, a second survey packet is mailed to each of the women who have not yet responded. A final thank you and reminder letter is sent two weeks after the second survey attempt is mailed. Data collection for each month’s set of addresses will end 66 days after the initial mailing, which is one month after the final reminder letter.

SOARS Findings

Findings from North Dakota SOARS analyses will be instrumental in developing and implementing new maternal and child health programs and to modify existing programs. Project results will help inform public health policies and assist health professionals in incorporating the latest research findings into their standards of practice. Data from SOARS can enhance understanding of maternal behaviors and experiences and their relationship to stillbirth. This project will also monitor progress towards local, state, and national health objectives and goals.

SOARS Barriers

Barriers are also a consideration when conducting surveillance projects and research. One such barrier has been COVID-19, which has impacted the launching of the project. The initial target implementation of the project was May 1, 2020; however, the pandemic pushed back the launch date and expanded the initial mailing sample. Another consideration is the small size of the population of surveillance project and the potential difficulty that may arise to reach these populations or to obtain completed surveys due to the sensitive nature of the topic. Multiple years of data collection may be needed to form recommendations, policies, or educational information.

Ask a researcher archive

Kendra Erickson-Dockter, Chelsey Hukriede, and Grace Njau: An Introduction to the North Dakota Study of Associated Risks of Stillbirth (SOARS)
October 2020

Karen Ehrens: North Dakota Families are Facing Food and Other Hardships in the Wake of COVID-19 Pandemic, and Helpers Respond
September 2020

Ina Cernusca: Taking the pulse of North Dakota households during the COVID-19 pandemic.
July 2020

Nancy Hodur:Challenges of Grocery Stores in Rural North Dakota
May 2020

North Dakota Compass:2020 Compass Points: Measuring progress. Inspiring action.
March 2020

Amy Tichy:Student Veterans in the College Classroom.
February 2020

North Dakota Compass:North Dakota Compass launches the 2020 State Legislative District Profiles
January 2020

Grace Njau, Nancy Hodur:&Chelsey Hukriede: Risk Behaviors among Women with a Recent Live Birth in North Dakota: Findings from the 2017 North Dakota Pregnancy Risk Assessment Monitoring System (PRAMS)
November 2019

Ina Cernusca:& Karen Olson: Behind the scenes – The story of the North Dakota State Legislative District Profiles
October 2019

Ina Cernusca: Key demographic trends in North Dakota.
August 2019

Karen Olson: The 30th edition of the Annie E. Casey Foundation’s KIDS COUNT® Data Book finds that 175,772 children will shape the future of a more diverse North Dakota.
July 2019

Shweta Arpit Srivastava & Dr. Ann Burnett: “Giving rope and pulling it back”: Parental dilemmas to prevent adolescent substance use
June 2019

Ina Cernusca: 2019 Compass Points: Setting direction for improving the quality of life in North Dakota
May 2019

Joshua Marineau and Onnolee Nordstrom: Learning from Fargo -- An Exploration of the Fargo-Moorhead Entrepreneurial Ecosystem
March 2019

Nancy Hodur: Improving Oral Health for Older Adults in North Dakota
November 2018

Rachelle Vettern: Engaging Volunteers across Generations
October 2018

Karen Olson: The 2018 KIDS COUNT® Data Book reveals strengths and challenges for children in North Dakota – and emphasizes that an inaccurate census in 2020 threatens to worsen existing challenges for North Dakota youth
July 2018

Lori Capouch: Is food access a concern in rural North Dakota?
May 2018

Deb Nelson: Williston Basin 2016: Employment, Population, and Housing Forecasts – An Overview
January 2018

Karen Olson: North Dakota among Top 10 States in Country for Child Well-Being
July 2017

Nancy Hodur: SEAL!North Dakota: A School Dental Sealant Program
June 2017

Grace Njau: A Brief Introduction to the North Dakota Pregnancy Risk Assessment Monitoring System (PRAMS)
April 2017

Ina Cernusca: North Dakota’s Women study: A brief overview
March 2017

Dean Bangsund: Effects of Fargo-Moorhead Area Diversion on Spring Planting for Producers
February 2017

Deb Nelson: Vision West: Leading, Educating, and Collaborating to Mobilize the 19 Western North Dakota Counties Towards Resilience and Prosperity
December 2016

Nancy Hodur: North Dakota Statewide Housing Needs Assessment: A Brief Overview of the Population and Housing Forecast component
November 2016

Social Isolation: Experiential Narratives of African Refugee Women in the Fargo-Moorhead Community
September 2016

Sean Brotherson: Father Involvement and the Future of Children and Families
July 2016

Carol Cwiak: Bakken Oil: What Have We Learned and What Will We Do Differently Next Time
June 2016

Jessica Creuzer: The Changing Face of Western North Dakota: What are the Effects of Increased Travel from Energy Development
April 2016

ND Compass: City Profiles
February 2016

ND Department of Health: Making Change Happen
January 2016

Jennifer Weber: A Bold New Direction for the North Dakota University System - The NDUS Edge Dashboards
December 2015

Wendy Troop-Gordon: What Has Science Taught Us About Bullying?
November 2015

ND Compass: A Look at the Youngest North Dakotans
October 2015

Kendra Erickson-Dockter: Growing Older in North Dakota
September 2015

Michael Ziesch: Data You Can Trust: The Labor Market Information Center
August 2015

Malini Srivastava and Troy Raisanen: efargo: City Scale Sustainability
July 2015

Kevin Iverson: The State Repository of Census Information- The North Dakota Census
June 2015

Wonwoo Byun: Reducing Sedentary Behavior is a Key for Obesity Prevention in Children
May 2015

Kathryn Gordon: The Science of Suicide Prevention
April 2015

ND Compass: Tell a Story with Data! The Importance of Crade-to-Career Success
March 2015

Abby Gold: Community Food Systems: Food Charters and More
February 2015

Heather Fuller-Iglesias: The Importance of Recognizing the Role of Social Support in Human Development Across the Lifespan
January 2015

Michael Carbone: Using Data to End Homelessness
December 2014

Randal Coon: Tribal Colleges Contribute to the State's Economy
November 2014

Deb White: Women's Representation in Elected Office
October 2014

Randal Coon: Pull Factors Measure Retail Trade Performance
September 2014

Karen Olson: North Dakota ranks Well Nationally with Regard to Overall Child Well-Being; However, Substantial Opportunities for Improvement Exist
August 2014

Julie Garden-Robinson: Guard Against Grilling Gaffes: Healthy Grilling and Food Safety Tips
July 2014

Michael Noone: Extreme Weather Patterns- North Dakota Has It All
June 2014

Kathleen Tweeten: Why All Community Development Decisions Should Use the Community Capitals Framework
May 2014

Clayton Hilmert: Stress effects on pregnancy: The impact of the 2009 Red River flood on birth weight
April 2014

Karen Ehrens: Food Deserts and how they impact North Dakota
March 2014

Gretchen Dobervich and Kendra Erickson-Dockter: New Geographic Profiles: How they can work for you
February 2014

Compass Staff: "New Compass Team Brings Changes in 2014"
January 2014

Donna Grandbois: "Fargo-Moorhead American Indian Community-Sponsored Health Needs Assessment"
November 2013

Karen Olson: "North Dakota KIDS COUNT - why it counts for you
October 2013

Nancy Hodur: "Western North Dakota School Administrators Face Challenges"
August 2013

Megan Chmielewski: "Annual population estimates tell interesting stories about North Dakota's growth patterns"
July 2013

Ramona Danielson: "Learn how to make the ND Compass website work for you"
May 2013

Karen Olson: "About the American Community Survey (ACS)"
February 2013

North Dakota Compass

Center for Social Research
North Dakota State University

Compass created by:
Wilder Research

© 2020. All rights reserved.