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University of North Carolina School of Medicine, Chapel Hill, North CarolinaUniversity of North Carolina Gillings School of Global Public Health, Chapel Hill, North Carolina
University of North Carolina School of Medicine, Chapel Hill, North CarolinaUniversity of North Carolina Gillings School of Global Public Health, Chapel Hill, North Carolina
University of North Carolina School of Medicine, Chapel Hill, North CarolinaCenter for Bioethics, Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina
University of North Carolina School of Medicine, Chapel Hill, North CarolinaCenter for Bioethics, Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina
Correspondence to: Ilona T. Goldfarb, MD, MPH, Department of Obstetrics and Gynecology, Massachusetts General Hospital, 55 Fruit Street, Boston, MA 02114. Tel.: (617) 724-2229.
The COVID-19 pandemic led to unprecedented changes in care delivery across the pregnancy care continuum. Our primary objective with this research was to characterize the range of ways that the early months of the COVID-19 pandemic affected pregnancy, childbirth, and postpartum care experiences.
Methods
Pregnant and recently pregnant patients (n = 20) from obstetrics and gynecology clinical sites associated with Massachusetts General Hospital were interviewed about their experiences with prenatal care, childbirth, and postpartum care during the first wave of the COVID-19 pandemic. Interview transcripts were analyzed for emergent themes.
Results
This sample included 20 pregnant and postpartum people, including 11 individuals who tested positive for COVID-19 during pregnancy or postpartum and nine with suspected infection. The ways in which COVID-19 or suspected COVID-19 affected experiences of prenatal care, childbirth, and postpartum care were complex and varied. Three themes were identified across narratives of pregnancy, birth, and postpartum care: patient perceptions of diminished access to care, stigma due to COVID-19 infection, and limited capacity of providers to honor patient preferences.
Conclusions
A better understanding of pregnant and recently pregnant people's experiences during the early months of the COVID-19 pandemic can inform infection control policies and clinical care delivery practices that are more congruent with the needs and values of pregnant, birthing, and postpartum people as institutions craft responses to future pandemics. Approaches that maximize meaningful access across the pregnancy care continuum, center patients' priorities within adapted care models, and honor patient preferences as much as possible are important aspects of an appropriate response to future waves of COVID-19 and other pandemics.
Access to and engagement with the health care system are of heightened importance during pregnancy and childbirth, but the COVID-19 pandemic significantly disrupted care delivery in obstetrics and across medicine. During the initial response to the pandemic when relatively little was known about the virus, patients and providers faced immense uncertainty about a possibly increased risk from COVID-19 infection during pregnancy, as well as the potential for vertical transmission and unknown long-term impacts for the developing fetus. Concern about bringing pregnant people and their families to the same locations serving COVID-19 patients and potentially exposing them to the virus added complexity to the provision of maternity care.
Hospitals and clinics rapidly responded to minimize opportunities for viral transmission at the point-of-care and implemented strict infection control policies for prenatal care visits, births, and postpartum appointments. Some hospitals converted prenatal visits to telemedicine appointments or restricted patients from bringing children, partners, or other supportive companions to their care visits (
). Policies restricting visitors during childbirth were implemented; some institutions allowed no support person for the birthing individual and others allowed one companion (
). Throughout the initial wave of the pandemic, public health and professional organizations offered conflicting and sometimes unclear recommendations regarding separation of newborns from mothers with COVID-19.
We sought to understand the ways in which the initial wave of the COVID-19 pandemic—and institutional responses to it—affected experiences of care during pregnancy, childbirth, and the postpartum period from the standpoint of childbearing persons. In the first wave of the pandemic, infection control policies were rapidly emerging and evolving, data on risk to pregnant people were limited, and effective vaccines were not available. During this time, we conducted qualitative interviews with pregnant and recently pregnant people to explore the impact of the pandemic and initial infection control policies on patient experiences across the pregnancy care continuum. Findings may help to inform obstetric care adaptations when considering the evolving COVID-19 pandemic and future infectious disease outbreaks.
Methods
The data for this analysis were collected between April 2020 and August 2020. This study was approved by the Partners Institutional Review Board at Massachusetts General Hospital (MGH).
Sample
We used a cross-sectional, convenience sampling approach. All MGH patients with confirmed or suspected COVID-19 infection or exposure to COVID-19 infection are designated persons under investigation (PUI) and entered into a clinical database for regular follow-up with clinic staff to track COVID-19–related symptoms and recovery. English-speaking pregnant or recently pregnant patients between the ages of 18 and 45 on this clinic list were offered participation in this study by MGH clinical staff during clinical follow-up calls. The interview guide was developed with experts in qualitative research methods, obstetrics, and public health.
Process
All participants provided verbal informed consent. A member of the study team (E.J.) conducted semistructured, in-depth qualitative interviews in English over the phone, asking participants a series of questions about their experiences of COVID-19 symptoms and testing, prenatal care, birth, postpartum care, and breastfeeding (Figure 1) (
). Participants provided socio-demographic information at the end of the interview. Interviews lasted approximately 1 hour and were recorded and transcribed verbatim.
Codebook development was an iterative process, incorporating both a priori codes generated from the interview guide questions as well as inductive codes that were identified when reviewing and discussing the data. Once the codebook was finalized, we coded transcripts with NVivo 12 software. To ensure inter-rater reliability, two members of the study team (E.J. and N.S.) double-coded four transcripts (20%) and resolved discrepancies through discussion. From this analysis, we identified emergent themes that were salient across participant experiences of care (
). Findings around participants’ daily lives, support systems, household stress and safety, emotional health, and coping mechanisms are reported elsewhere (
Participants ranged in age from 28 to 49 years, with an average age of 35.6 years. Most participants were married and had private health insurance (Table 1). Participants varied across gestational age, gravidity, self-described race and ethnicity, and education level.
Eleven participants tested positive for COVID-19, and nine were deemed PUI. Of the PUI, six were symptomatic but untested given limited test availability and eligibility during the first wave of the pandemic, and the three who tested negative were either symptomatic for COVID-19 illness or had an exposure to a person with known COVID-19 (Table 2). Among those who tested positive for COVID-19, one participant was asymptomatic, and others experienced a range of symptoms from mild illness to critical conditions requiring hospitalization.
Table 2COVID-19 Symptoms and Status
COVID Status
n
%
Tested positive
11
55
Suspected COVID-19 infection: tested negative
3
15
Suspected COVID-19 infection: not tested/unknown test result
Experiences of Care During Pregnancy, Childbirth, and Postpartum
Three intersecting themes emerged across participant experiences of care during pregnancy, childbirth, and the postpartum period. First, participants described diminished access to care, including cancelled prenatal care appointments, perceived limitations on ability to seek vaginal births, and restricted access to postpartum contraception and consultation. Second, participants relayed how ambiguity about policies led to unclear—and ultimately unmet—expectations about care experiences. Stark disjuncts emerged between the way care during pregnancy, birth, and the postpartum period were “supposed to be” and the ways in which these experiences were disrupted by COVID-19 infection or infection control policies. Instead, participants described ways in which hospital staff were unable to honor their preferences, although many acknowledged that providers were limited by operating within pandemic response policies. Third, participants identified instances of feeling stigmatized while pregnant, giving birth, or postpartum, because of COVID-19 infection or infection control policies.
Decreased Access to Care
Among pregnant participants with confirmed or suspected COVID-19 infection, clinics cancelling in-person appointments were a source of significant distress, as were long delays between appointments. Some participants perceived their in-person prenatal appointments to be postponed indefinitely.“They cancelled all my appointments when they found out I had it…So that made my anxiety even more worse because I don't know…what was going on with the baby.”— Kiara, 34, Black, COVID-19 Positive, 2nd Trimester
Participants expressed concern about impacts of cancelled in-person prenatal care appointments, and fewer ultrasounds meant less reassurance about fetal development.“I know I'm fine and the baby is fine, but I just want to see it. Seeing is believing.”— Brianna, 32, Black, COVID-19 Positive, 3rd Trimester
Several participants experienced prolonged COVID-19 illness, which further delayed their access to prenatal care. One participant was instructed to monitor the pregnancy at home, and expressed concern that without medical expertise, it would be impossible to tell if something went wrong.“I'm tracking her movements and my blood pressure, but I'm not [a] doctor, I hope I'm doing it right.”— Dina, 30, White, PUI Tested Negative, 3rd Trimester
Even for participants who did not test positive for the coronavirus, scheduling changes due to COVID-19 infection control practices at the hospital extended the number of weeks (and in one case several months) between in-person appointments, and the delay prompted anxiety and concern.
Perceived limitations on access to care also affected perceptions of care quality. For all ambulatory patients across disciplines with suspected or confirmed COVID-19 infection, care appointments were delayed when appropriate or shifted to a specifically designated COVID-19 clinical site within the hospital. For some, this translated to perceived compromises in the quality of prenatal care. For instance, although obstetric providers and ultrasound equipment were available in these COVID-19 units, a patient-facing ultrasound screen was not. Some participants described a diminished ultrasound experience in non-obstetric units where the sonograms were not visible to the pregnant person.“I didn't receive the same kind of care that I would have if I didn't have the coronavirus.”— Amelia, 35, White, COVID Positive, Postpartum
Other participants did not perceive differences in care quality relative to before the pandemic.“The quality of care has still been very high…I am being taken good care of…if I had any concerns, if something came up tomorrow, I feel like I don’t have any hesitation about calling.”— Emma, 37, White, PUI not tested, 3rd trimester
As appointments moved online, participants reflected on the quality of telehealth care: most agreed that provider kindness and attention to their needs was not affected. One participant acknowledged the comfort of talking to their provider on the phone:“It makes you feel like somebody cares. [It] feels like, ‘Okay, I'm with you. I just can't see you, but I'm with you.’”— Brianna, 32, Black, COVID Positive, 3rd Trimester
Others described that telehealth did not offer the same reassurance about how their pregnancies were progressing.“It’s not the same as having them hear the heartbeat and measure my stomach…I don't think it gives you the same validation.”— Dina, 30, White, PUI Tested Negative, 3rd Trimester
Factors that increased distress among participants who were not able to access in-person prenatal care included past experiences of adverse pregnancy outcomes and known exposures to COVID-19. One participant with two recent prior miscarriages experienced bleeding in the first trimester of the current pregnancy; ultrasound appointments to assess the viability of the pregnancy were cancelled and rescheduled multiple times due to suspected COVID-19 infection.
Participants hospitalized for severe COVID-19 also perceived inadequate pregnancy-focused care.“I was admitted into the hospital. And I was only 11 weeks pregnant when it had happened. And they couldn't send somebody down, like an ultrasound tech, to give me an ultrasound because of the precautions of the coronavirus. So it was just scary.”— Ava, 34, White, PUI not tested, 2nd trimester
Despite expressing trust in providers, participants still felt concerned about issues for which clinicians were not able to offer reassurance, especially the impact of COVID-19 infection on the fetus and potential long-term effects. In addition, one participant discussed how her racial identity intersected with her perceived risk of harm from COVID-19.“I’m African American…It just changes the way I think about everything in terms of just general health…it’s like everything always impacts you differently just because of your, just because you’re Black.”— Keisha, 35, Black/African American, COVID-19 positive, 2nd trimester.
After birth, intrapartum care experiences were also affected. Several participants described being offered hospital discharge sooner than ordinarily would have been standard before COVID-19. They described the difficulty in making a decision between limiting perceived COVID-19 exposure in the hospital and limiting access to immediate care in the early postpartum period. Of note, one participant reported being denied planned surgical sterilization postpartum because of a new hospital policy limiting elective procedures during the initial surge of the pandemic.“I wanted to get my tubes tied after the birth, but they said due to the virus, they weren't able to do it for me. I would have to wait...I wish they would just do it anyways. So I don't have to worry about it after.”— Selina, 33, Latina, COVID-19 Positive, Postpartum
Participants reported entirely virtual postpartum care visits. Some felt that virtual visits were less reassuring than an in-person visit for assuaging concern about recovery from childbirth:“I had a second-degree tear and just feel like that's something before the doctor says ‘go back to working out like normal or having sex,’ that seems like something that they would want to look at.”— Larissa, 38, White, COVID-19 Positive, Postpartum
Participants described not seeking in-person care for a range of postpartum conditions from umbilical hernia to mastitis because of their own concerns and wishes to avoid the hospital environment. Others expressed a desire for in-person postpartum care to receive support for breastfeeding, also expressing that they may have been more likely to seek lactation consultant services in the hospital if not for the pandemic.
Limited Capacity to Honor Patient Preferences
When participants did access care, they described ways in which infection control policies limited provider capacity to honor their preferences and meet their expectations.
For example, the policy requiring pregnant individuals to attend prenatal care alone was in direct conflict with their preferences and expectations.“My boyfriend—he couldn't be there for all my ultrasounds. It feels kind of like—it sucks, cause this is my first baby so like all the experiences you're supposed to have with your partner, and you have to do it on your own.”— Rosa, 31, Latina, PUI not tested, 2nd trimester.
For others, this was not only disappointing but a source of stress, particularly for those who had to find COVID-19–safe childcare for the duration of their appointments rather than bringing their children to appointments.
All participants, but especially those who experienced COVID-19 symptoms or tested positive for COVID-19 on admission or during labor, faced unanticipated changes in their birth plans in ways that they felt did not honor their preferences. One participant experienced an elevated temperature and labored with full COVID-19 precautions and personal protective equipment; ultimately, she had negative test results.“This is not the way it should have been. It kind of took away from my experience.”— Christine, 38, White, PUI Tested Negative, Postpartum
Multiparous participants compared giving birth during COVID-19 with past pre-pandemic experiences, describing the birth as emotionally less intimate and physically more difficult, because of either COVID-19 symptoms or COVID-19 infection control policies, such as wearing a mask during labor.
In many cases, COVID-19 not only affected the birth experience but the planning for birth, limiting pregnant people's ability to choose—to the extent that they may have been able to pre-pandemic—where and with whom they desired to give birth. Although patients we interviewed were permitted a support person in the delivery room per institutional policies, several participants expressed worry that they would labor and give birth alone.“I'm just not looking forward to going into have the baby by myself, but I hear they're not letting anybody going with the women in labor.”— Viola, 35, Black, PUI tested negative, 2nd trimester.
For several participants, the context of COVID-19 raised questions about birth place. Despite concern about risk of COVID-19 exposure in the hospital, most participants interviewed perceived hospital or birthing center births to be the safer option compared with home births. However, one participant was asked by her mother to plan a home birth so that her mother and her partner could attend the birth.
In the postpartum period, expectations around newborn bonding were deeply affected by infant separation policies and confusion around changes in and implementation of this policy. Many participants had anticipated seeing the infant immediately after childbirth as a joyful and important moment, making separation policies particularly painful, and source of perceived injustice.“I felt like my—my rights were being violated. You know, I felt like they couldn't tell me that I couldn't hold my own kid.”— Amelia, 35, White, COVID Positive, Postpartum
Participants also expressed concern that COVID-19 policies may affect bonding with their newborn. For example, doctors recommended one participant keep a mask on around the newborn for multiple weeks after birth, which caused excess distress:“I realized 10 days in that that I actually hadn't kissed my son.”— Kayla, 43, White, COVID-19 Positive, Postpartum
Perceived stigma
Beyond unmet expectations, multiple participants perceived stigma related to COVID-19 infection and policies during pregnancy, birth, and the postpartum period. One participant described the psychosocial costs of being quarantined while pregnant:“[P]eople think you're like spreading something, that—well it is—it is uncomfortable and it is scary but it makes you feel unwanted, depressed, scared, worried and anxious.”— Kiara, 34, Black, COVID-19 positive, 2nd trimester.
The separation of care for pregnant patients with COVID-19 was also perceived as stigmatizing, even if the reasons for separation were understood and acknowledged.“There was a lot of: ‘Don't come in, you can't go with regular people, this is going to be you in a separate room and everyone else is going to be gowned up and super careful touching you.’”— Isabella, 41, White, COVID-19 positive, 3rd trimester.
Interviewed participants who gave birth while infected with COVID-19 also reported perceived stigma while laboring.“You feel like everybody's like looking at you like, stay away, like you have the plague…it felt like kind of like I have the plague because nobody wanted to come into my room. Because they were all afraid…There were times where I was hungry and I wouldn’t be able to do anything, because they weren't coming into the room.”— Selina, 33, Latina, COVID-19 positive, postpartum.
Others experienced stigma when interfacing with intrapartum and postpartum care. Participants described policies to limit maternal exposure to the infant, such as disallowing skin-to-skin contact, recommending newborn separation, and placing restrictions on breastfeeding like asking people to wash their breasts before each feed or have the infant be wrapped fully in a blanket during the feed.“They usually do skin-to-skin right away and I wasn’t allowed to have any of that…the only time I could touch her was breastfeeding but she had to be wrapped up.”— Christine, 38, White, PUI Tested Negative, Postpartum
Others described how the practices differed by providers, “There was one nurse who brought a face cloth…and tried to tell me that I had to wash my breast…I'm not going to wash myself every time I have to breastfeed my kid…that same nurse, every time she came into the room, even in the middle of the night, she would move the bassinet 6 feet away from me on the other side of the room.”— Amelia, 35, White, COVID Positive, Postpartum
In addition to the emotional burden caused by these policies, participants worried about how they would provide care and nutrition for and bond with their newborns if they were advised against being near them.
Discussion
In our study, three overarching themes characterized participant narratives of the pregnancy care continuum during the initial months of the COVID-19 pandemic: 1) perceptions of decreased access to care, 2) a limited capacity for the health system to honor patient preferences, and 3) feeling stigmatized in health care settings. Our data highlight the ways in which COVID-19 infection control policies uniquely affect obstetrical care and place particular burdens on pregnant, birthing, and postpartum people.
Consistent with recent literature describing pregnant people's challenges navigating care during the initial wave of the pandemic in the United States, our data highlight the costs of precautionary policies (
, decreased access to prenatal “rites of passage” caused distress, anxiety, and sadness for participants, and was viewed as one important way that infection control policies limited the capacity for providers to honor patient preferences. There is certainly utility to switching some appointment types (e.g., medication management, psychotherapy) to virtual visits during the pandemic, but our data emphasize the high value placed by patients on in-person services such as prenatal ultrasounds and postpartum physical examinations. Our findings are consistent with data describing the experiences of low-income postpartum patients with delays in care and drawbacks of virtual care (
). Although we are now more than 2 years into the COVID-19 pandemic, the first few months of future crises may similarly challenge health care delivery. Our findings emphasize the importance of appropriate access to respectful, in-person services even while health systems adapt to pandemic contexts.
Our study adds the troubling finding that pregnant and birthing people experienced perceived stigma due to COVID-19. Several participants in this study reported feeling “unwanted,” feared, and unwelcome in the space where they were to give birth. Participants expressed some anger at their experiences of stigma, but predominantly the stigmatization was isolating and disparaging. Instructions to wash breasts before breastfeeding, not hold infants skin-to-skin, wear masks around infants, or keep infants on the other side of the hospital room meant that participants were attempting to reconcile conflicting information about how to provide the best care for their infants. Stigma around maternal infection and blame for ensuing fetal/infant risk has adversely affected the pregnancy and birthing experiences of many individuals living with infectious diseases, including HIV, Zika Virus, and Ebola Virus (
). Such stigma also fits into the broader concerning trope of “mother-blame,” the trend of attributing fetal or infant harm only to maternal behavior without considering external factors (
One limitation of this study is that data were collected during the first COVID-19 wave in a city with high caseloads and must be contextualized as such; personal protective equipment and COVID-19 tests were in short supply, and institutions all over the country were rapidly developing new policies. At the time of data collection, limited available information suggested an increased risk of severe COVID-19 infection, hospitalization, and invasive ventilation during pregnancy (
Characteristics of women of reproductive age with laboratory-confirmed SARS-COV-2 infection by pregnancy status—United States, January 22-June 7, 2020.
MMWR Morbidity and Mortality Weekly Report.2020; 69: 769-775
). Additional data have since emerged clarifying the increased maternal morbidity and mortality, as well as adverse pregnancy outcomes, associated with COVID-19 infection during pregnancy (
Our findings carry several implications for infection control policies and clinical practice that may shift throughout the COVID-19 pandemic and future infectious disease outbreaks. First, findings highlight the opportunity to use creative ways to meet the needs of pregnant, birthing, and postpartum people, such as using technology to accommodate additional support people into care visits or childbirth. Our data reflect the chaotic scramble of most health institutions to pivot in care delivery while navigating inadequate capacity for increased patient loads and uncertainty about risk, modes of transmission, and the long-term impact of the virus itself. In the time since these data were collected, clear guidance that is more aligned with the care needs expressed by our participants has been issued that recommends, for example, not requiring asymptomatic testing at onset of labor, promoting shared decision-making processes around maternal/infant separation after birth, and using technology to allow additional support persons to be a part of the birthing process (
). However, recommendations remain in place for increased utilization of telehealth, face coverings during labor and when interacting with the infant, limitations on birthing companions, and physical distancing from the infant after birth. Institutional preparedness efforts readying for future outbreaks may benefit from a focus on clear communication around care delivery changes and creative ways of using technology to ensure that even when patients must physically navigate care alone, they can receive consistent virtual support. In addition, interventions to reduce stigma related to infectious disease in health care settings are effective, and future efforts to adapt care in the face of emerging pathogens may take important lessons from ongoing work investigating ways to reduce HIV-related stigma in the prenatal care context (
). Although necessary infection control policies may limit the capacity of providers and the health system more broadly to honor patient preferences, acknowledging the difficulty of these restrictions for patients may mitigate some of their disappointment and validate their experiences of being pregnant, birthing, and going through the postpartum period during a pandemic.
Finally, inequitable impacts of limited capacity to accommodate patient preference should be further investigated. For example, the shift to only virtual postpartum visits must be contextualized by racial disparities in maternal mortality and the fact that one in three pregnancy-related deaths occurs between 1 week and 1 year postpartum (
). Similarly, the perception of a Latina participant in our study of being denied access to postpartum sterilization echoes a long and problematic history of reproductive coercion in marginalized communities. Participant concern regarding elevated risk from COVID-19 infection due to racial identity is consistent with how the pandemic has both highlighted and compounded racial disparities in access to care, social determinants of health, and health outcomes both within and outside of the obstetrics context. As infection control policies shift, COVID-19 vaccination uptake waxes and wanes, and future variants or novel pathogens emerge, it is critical for institutions and providers to clearly and continuously examine, justify, and communicate changes to prenatal, birth, and postpartum care policies.
Conclusion
A better understanding of pregnant and recently pregnant people's experiences during the early months of the COVID-19 pandemic may lead to infection control policies and clinical care delivery practices that are more congruent with the needs and values of pregnant, birthing, and postpartum people as institutions craft responses to future pandemics. Recommendations to ensure meaningful access across the pregnancy care continuum, center patients' priorities within adapted care models, and promote patient dignity and honor patient preferences during prenatal, birth, and postpartum care are important aspects of any response to COVID-19 and future pandemics.
Acknowledgments
The principal investigator (I.T.G.) had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
References
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Characteristics of women of reproductive age with laboratory-confirmed SARS-COV-2 infection by pregnancy status—United States, January 22-June 7, 2020.
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Elana Jaffe, MPH, is a second year medical student at the University of North Carolina School of Medicine and a graduate research assistant in the Department of Social Medicine.
Natalie Spach, MD, MPH, graduated from University of North Carolina School of Medicine in 2022 and is a resident physician in Obstetrics and Gynecology at Stanford University.
Kristen A. Sullivan, PhD, MSW, MBA, is a Research Scientist in the Department of Social Medicine at the University of North Carolina at Chapel Hill.
Anne D. Lyerly, MD, MA, is a Professor of Social Medicine and Research Professor of Obstetrics and Gynecology at the University of North Carolina at Chapel Hill.
Ilona T. Goldfarb, MD, MPH, is a board-certified maternal fetal medicine specialist at the Massachusetts General Hospital and an Assistant Professor in Obstetrics, Gynecology, and Reproductive Biology at Harvard Medical School.
Article info
Publication history
Published online: November 07, 2022
Accepted:
November 3,
2022
Received in revised form:
November 2,
2022
Received:
April 8,
2022
Publication stage
In Press Corrected Proof
Footnotes
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.