The 2019 novel coronavirus disease (COVID-19) pandemic continues to spread and worsen in many parts of the world. More than 20 million infections have been reported globally and new research and advice are published daily as people around the world try to navigate life during a pandemic.
It has been clearly communicated on a global scale that older populations are more at risk, including specifics on which pre-existing conditions can lead to more serious outcomes when contracting the virus and general advice to exercise caution if you fall in this group. The (global) research and advice surrounding pregnancy and infants remains less clear, however, often with varying advice per region or country, leaving a large portion of the population, preparing to bring new life into the ‘new normal’, anxious and unsure about which precautions to take to remain healthy while pregnant or while caring for an infant.
As the pandemic grows, it is especially important to understand how the virus and the pandemic are affecting pregnant women and infants. While early data suggested that being infected with the virus did not increase the risk of adverse pregnancy or infant outcomes, as more information has emerged, it has become clear that risks for some adverse pregnancy and infant outcomes are increased (e.g., preterm birth, cesarean section, respiratory distress, and hospitalization).
Many aspects of daily life have either been altered or even put on hold until the virus is under control, but pregnancy and birth remain constant. Women around the world find themselves navigating pregnancy and giving birth in unprecedented circumstances without clear guidance and often hearing ‘we don’t know’ as an answer to their most intimate questions about how the coronavirus may impact their pregnancy or the health of their newborn.
Launched in July 2020, as a collaboration between various universities and medical associations in the United States, the ‘Healthy Outcomes of Pregnancy for Everyone in the time of novel coronavirus disease-19 (HOPE COVID-19) study’ is a multi-year, prospective investigation designed to better understand how the SARS-CoV-2 virus and COVID-19 impact adverse pregnancy and infant outcomes.
Laura Jelliffe-Pawlowski, PhD & Professor, Department of Epidemiology & Biostatistics, Director of Precision Health & Discovery for the UCSF California Preterm Birth Initiative (PTBi-CA), and Primary Investigator of the HOPE COVID-19 study in the University of California San Francisco School of Medicine explains, “We are looking at how the virus that causes COVID-19 and factors associated with the pandemic like stress and social distancing might affect a woman or birthing person's risk for certain kinds of adverse pregnancy outcomes, like preterm birth and preeclampsia, as well as newborn and infant health.”
“While the study is scientific, it’s not only about understanding potential effects of infection but also, very much focused on gaining insights about the experiences of women and birthing persons from all around the world,” says Laura.
The study examines how the pandemic exacerbates existing hardships such as social isolation, economic destabilization, job loss, housing instability, and/or family member sickness or death among minoritized and marginalized communities. Specifically, the study examines how pandemic-related hardships impact clinical outcomes and characterizes the experiences of Black, Latinx and low-income groups compared to those in other race/ethnicity and socioeconomic stratum.
“We are looking at a lot of information; how people are feeling mentally (dealing with anxiety, depression and isolation), but also resilience and how people are coping. What does nutrition look like during this time, and what does utilization of healthcare look like and how does it differ to pre-pandemic. Scientifically we are looking at the underlying biology in a sub-set of women to examine how the virus impacts the health of pregnant women and infants,” Laura explains.
Most pregnant women and birthing persons who are 18-years of age or older can participate in the study. The study is designed to allow women and birthing persons to participate in a survey-only study cohort (group) or in a survey+testing study cohort (group). The only criteria are that participants have to be pregnant to enroll and can start participating in the survey be at any time of the pregnancy.
Participants in the survey-only cohort complete surveys (in English - and soon Spanish) using their cell phone or computer from enrollment up to 18-months after their baby is born. Women and birthing persons in the survey+testing cohort complete these same surveys and have nasal and blood specimens collected and tested (which will soon be available women living in the state of California).
HOPE currently has women participating from 30 states in the USA, as well as, UK, Sweden, Australia, and Canada with a goal to expand across the globe.
“We are interested in the experiences of all women and birthing persons. The survey is open to anyone (around the world) to participate. The purpose of the worldwide survey is to take advantage of the opportunity to gain a broad amount of data and experience. Every piece of information, every single survey response, is important and helps the world understand what the circumstances are like for pregnant women and birthing persons,” continues Laura.
One of the key interests in the survey is in looking at how the pandemic is affecting low-income people and Black and Brown women and birthing persons who may already be at increased risk for adverse outcomes and often suffer the impacts of systematic discrimination and racism.
“Historically, and statistically, preterm birth rates increase (overall) following traumatic events. These impacts are often felt the hardest in lower income women and especially, in Black and Brown women who were at already higher risk of preterm birth before the traumatic event. Often the trauma magnifies already existing inequities. That is our fear with COVID-19 and pandemic-related hardship – that it will makes things even worse for populations who were already struggling,” Laura explains.
The disparate distribution of the rates of and impact of SARS-COV2 highlight longstanding health inequities along racial/ethnic and socioeconomic lines. One study found that the incidence of SARS-CoV-2 in Black pregnant women was 28.4% compared to 3.5% in White pregnant women. Another recent study in Boston found that 72% of pregnant and postpartum Hispanic women had SARS-CoV-2 while only 27% of non-Hispanic pregnant and postpartum women were positive. Racial disparities in the rates of infection were found to persist in women utilizing public health insurance, as 64.6% of Hispanic women utilizing public insurance had SARS-CoV-2, whereas only 27.8% of non-Hispanic pregnant and postpartum women utilizing public insurance were positive.
When combined with already existing disparities in birth outcomes, the SARS-CoV-2 pandemic has the potential to exacerbate adverse maternal and infant outcome inequities for Black and other marginalized and minoritized women. (Source: Examining the Impact of the 2019 Novel Coronavirus and Pandemic-Related Hardship on Adverse Pregnancy and Infant Outcomes: Design and Launch of the HOPE COVID-19 Study)
“We are striving to ensure that our sample is diverse and also includes input and experiences (ideally half) from lower income and women of color to be able to understand what inequities look like. Not just from the vantage point of race ethnicity and socio-economic status but also, what does this look like globally? What does it look like to be in a developed setting vs a developing setting? So far, survey data from the study suggest that that there are striking similarities - women all over the world are experiencing a lot of uncertainty right now. Questions like: Is it safe to go to the hospital? Will I have to be alone in the hospital when I deliver? Can I breastfeed safely if I am infected? Are being asked by women everywhere,” says Laura.
“We hope that this study is a way to help bind people together during this traumatic but unique experience, where in some ways, we can all relate,” she continues.
The survey also includes open ended text fields where women can just share their thoughts and feelings, their worries and ways of coping. These fields are designed to serve as a safe place to share experiences and as a way to help communicate about the stress and anxiety that comes with parenting during a pandemic.
“For this study in particular, we are trying to do things differently, in terms of reporting the data. Usually we collect, collate, and analyze data and then write reports and papers after lengthy research has been completed. But this isn’t just about science. This is about humanity. Our intention is to begin sharing results as soon as possible in order to highlight what pregnant women around the world are currently experiencing and, to report on any findings that could improve the care of women during these times. We anticipate reporting on findings while still enrolling using non-traditional channels including social media and popular press outlets. We will also be sharing data and findings with study participants on a monthly basis. There is much we can learn and share along the way and the study participants are our partners. This information needs to reach as many people as possible – starting with our participants,” Laura explains.
The monthly HOPE newsletter will highlight current enrollment and findings and will also highlight questions suggested by participants and include personal stories from survey participants (while respecting their privacy completely). All official reports and white papers will be sent to public health professionals as resources to be used to better understand how the virus and the pandemic are affecting pregnant women and infants around the world.
“Parents are struggling because literally every decision they make now feels like a choice between their children’s mental and physical health. Motherhood in 2020 means that every decision you make has a risk, for yourself and your family, your children,” says Laura. “We want people to be seen and know that someone cares about how they feel and what their experience are like,” she continues.
Common questions from parents of babies right now include: How can we safely socialize them? What might be the effect of less socialization? How could less socialization affect things like the immune system and how comfortable they are with other kids (and adults)? Laura says that while there are not always ‘right’ answers, sometimes it’s more important to just be honest with the public.
“Public Health Officials would like to be able to provide answers and are often acting as if they know, but nobody really knows… we believe that it’s okay (and important) to be honest and more transparent with people. What doesn’t help is when people are dishonest or afraid of being honest with women. Sometimes we just need to say, ‘We don’t know but we are trying to find out,’” she says.
The HOPE COVID-19 Study is a unique opportunity to gain personal insights into the experiences of pregnant women and new mothers around the world. But they need your help to reach as many participants as possible. Read about the study online, share the study with friends, family and your network, or enroll today if you are currently pregnant.
“The more people who answer, the more information we all have. It’s not only in the hands of the government or health officials, but also is very much in the hands of the people to speak up and say, ‘this is what is happening to us’ and to have a global view,” says Laura.
“We need all voices, from all women because all of these different experiences really help us understand, not only the health of women and their infants during this time but also what things might be placing women or protecting them from higher risk outcomes. We need everyone’s help in understanding these things.”
The HOPE COVID-19 study is funded by grants and donations. Learn more and consider donating to this important cause.
Are you pregnant or a new mother looking for information on COVID-19?
By: Anna Meijer in collaboration with Laura Jelliffe-Pawlowski and Allison O'Leary