Low trust,high barriers: A qualitative study of perinatal care experiences in New York City during the early COVID-19 pandemic

Abstract

Background:

The COVID-19 pandemic exacerbated challenges faced by pregnant women, introducing new risks and intensifying existing disparities, particularly among those routinely experiencing race- and ethnicity-based discrimination. It remains unclear how the pandemic affected perceptions of perinatal quality of care (QoC).

Objectives:

To explore mothers’ experiences of pregnancy, birth, and the early postpartum period during the early COVID-19 pandemic, attending to both health care encounters and to the broader structural and social forces shaping those experiences.

Design:

The COVID-19 Mother Baby Outcomes (COMBO) Initiative is a longitudinal, prospective cohort study investigating maternal-child outcomes among women from a predominantly low socioeconomic status, Latinx community in New York City who delivered during the pandemic. This qualitative substudy analyzed a subset of participants using modified grounded theory.

Methods:

Semi-structured interviews explored perinatal and pandemic experiences, perceptions of inequitable or poor treatment, and protective factors among 64 participants purposively sampled from the parent cohort. Analysis focused on 48 transcripts highlighting discrimination-related themes, which were transcribed and systematically coded using both inductive and deductive approaches.

Results:

Four themes reflected low perceived QoC: disrupted communication, lack of cultural sensitivity, inaccessibility of resources, and medical distrust. Medical distrust was both a driver and a consequence of perceived care. Central to the other three themes was uncertainty over whether poor QoC reflected pandemic-related disruptions, discrimination, or both, a pervasive ambiguity we term the Murky Waters phenomenon.

Conclusion:

Giving birth during the pandemic worsened perceptions of perinatal QoC, with discrimination compounding negative experiences. Findings underscore the link between care quality and trust in medical institutions, highlighting the need for evidence-based crisis protocols that both reduce unnecessary risk while preserving patient agency, particularly for marginalized populations. The pandemic exposed longstanding structural inequities, presenting an opportunity to address these patient-level manifestations and strengthen support for populations facing systemic barriers.

Keywords

pandemic perinatal perception women of color health disparities discrimination quality of care COVID-19 health care

Introduction

The COVID-19 pandemic was declared a statewide emergency in New York on March 7, 2020, in response to the rapid emergence of COVID-19 cases in the state.¹ Soon after, New York City (NYC) was identified as the first epicenter of the pandemic in the United States.^2,3 NYC-based hospitals took extraordinary measures to meet the unprecedented volume of patients by repurposing hospital spaces internally and expanding emergency and intensive care capacity citywide, going so far as to erect tents as emergency department expansions.³ At this time, pregnant women were flagged as a high-risk and vulnerable patient population requiring priority and attention.^4,5

NYC obstetric units and neonatal/infant care centers responded by implementing new containment policies, such as mandated COVID-19 testing, restrictions on maternal-infant contact, masking, and visitorship allowances.^6,7 These mandates evolved as knowledge of the virus grew and as governmental directives were issued. Though necessary for disease control, a consequence of these policies was that pregnant women and their families faced a disrupted care environment and were often unable to reliably predict and prepare for the conditions of their labor and delivery.⁸ In New York, changing one’s planned birth location or being separated from one’s newborn became common practice through May 2020 compared with that in other U.S. states.⁹

As the pandemic progressed, it coincided with a sociopolitical moment of reckoning with racial injustice in the United States.^10–12 Governmental rhetoric and policies reflected restrictive stances toward immigrant communities¹³ and overlapped with the intensification of health disparities faced by historically marginalized populations. In NYC, the pandemic disproportionately affected low-income immigrant communities and people of color,^2,3,13 and Black and Latinx patients died of COVID-19 at rates twice as high as white patients.¹⁴ Importantly, these disparities occurred against the backdrop of longstanding inequities rooted in structural racism and discrimination (SRD) and social determinants of health (SDOH), including socioeconomic status, language and literacy barriers, occupational hazards, crowded housing, reliance on public transportation, reduced health care access, and inequitable environmental regulations.^12,14–19

Data also show that perceived discrimination predicted increased illness severity and lasting symptom count for those infected with COVID-19, even after adjusting for sociodemographic factors and comorbidities. Notably, this effect was specific to discrimination-stress, rather than to general stress levels during the pandemic.⁹ Although health care access and quality were insufficient for minority communities before the pandemic,^12,20 the crisis exacerbated these inequities, leading to greater exposure and related morbidities.^21,22

These social and structural factors were reflected in disparities in health outcomes for perinatal women of color and their infants during the pandemic^22–28 with barriers to care rooted in inequities related to race, ethnicity, and language.^24,26,29 Qualitative studies centering diverse perinatal populations during COVID-19 foreground concerns about lack of support, virus transmission, vaccination,³⁰ and inadequate provider care.²³ A systematic review of pre-pandemic studies demonstrates that maternal discrimination experiences can impact not only individual-level health but also infant outcomes, including preterm birth, low birth weight, and physiological markers of stress.³¹ However, little is known about how these dynamics unfolded during COVID-19 for perinatal populations.

Recent findings indicate that exposure to health care discrimination, even once, is associated with higher levels of birth-related posttraumatic stress disorder (PTSD) and postpartum stress.²⁷ Stress during pregnancy is a known risk factor for adverse mental health outcomes and can affect fetal and infant development.³² Prior work from our parent cohort found that infants born during the pandemic, when maternal stress was likely heightened, showed differences in temperament and development at 6 months.^33,34 Maternal health outcomes are likewise shaped by pregnancy and birth experiences, which the pandemic impacted, particularly for women from marginalized backgrounds.^27,35,36 Altered labor and delivery protocols, such as mandated newborn separation, worsened depression, and anxiety symptoms.⁹ Negative pandemic birth experiences were also linked to postpartum anxiety, stress, depressive symptoms, birth-related PTSD, and reduced breastfeeding.²⁷

To understand modifiable factors underlying maternal health disparities at the patient-provider interface and identify areas for improving quality of care (QoC), it is critical to attend to women’s first-hand accounts of perinatal health care, and how racism and discrimination, situated within broader structural inequities, shape those experiences at the individual level. Such attention may guide efforts to improve QoC during crises and in routine practice. Objective care may meet clinical standards, but its felt experience decides whether patients heed advice, trust providers, and seek care again.^{19,29,37–39} Studies consistently link perceived discrimination to lower health care satisfaction, worse physical and mental health, and more frequent reports of poor treatment among racial and ethnic minorities.^{19,27,29,37–42} Together, these findings emphasize the need to examine how social and structural forces underlying perceived discrimination manifest in patient experiences and shape medical care and health outcomes.^10,19

This study qualitatively explores mothers’ experiences of pregnancy, birth, and the early postpartum period during the COVID-19 pandemic in NYC. Through our analysis, we aimed to shed light on how participants’ accounts of perinatal care may signal potential links to structural inequities, including racism and discrimination, as reflected in individual care experiences.

Methods

This qualitative substudy of the larger COVID-19 Mother Baby Outcomes (COMBO) Initiative explored how mothers experienced perinatal care during the COVID-19 pandemic. COMBO investigates the effects of the COVID-19 pandemic on maternal, infant, and dyadic health.^34,43 Participants were recruited from the parent study, leveraging quantitative cohort data by collecting nuanced narratives.

Research design

We employed a modified grounded theory approach (M-GTA) to explore perinatal care experiences without imposing predefined assumptions, while remaining attentive to individual variation and the larger structural forces shaping participant-level experiences.^44–50 The semi-structured interview guide was designed to be broad and theory-generating,⁵¹ addressing experiences of the pandemic, perinatal care, discrimination, and protective factors, alongside a priori gaps (SRD, poverty, SDOH stressors, access disparities, and care engagement). Iterative team discussion refined the guide to balance open-ended exploration with key domains. Consistent with M-GTA, the guide was also informed by an integrated theoretical framework, which emphasizes how environmental and historical contexts drive health inequity,^52–54 allowing later interpretation of data in relation to social and structural drivers of maternal health inequities.

A copy of the interview guide is provided in Supplemental Table 1.

Participants and sample size

Participants were drawn from the COMBO Initiative, which enrolled women receiving prenatal care at 18+ weeks’ gestation, those who delivered at a NYC hospital after March 2020, or those who self-referred. For this study, eligible participants were postpartum members of the parent cohort who delivered in a NYC hospital and could complete an interview in English or Spanish. Women still pregnant at recruitment, those not delivering in NYC, or those lacking fluency in English or Spanish were excluded. All participants provided written informed consent prior to participation.

Purposive sampling sought variation in SDOH, with emphasis on participants reporting moderate-to-severe discrimination on the expanded Everyday Discrimination Scale (EDS; ≥11),^55–58 a threshold associated with meaningful differences in psychosocial and health outcomes.⁵⁹ The EDS was administered in the parent study between 2 and 6 months postpartum. Recruitment also prioritized participants with dyadic neuroimaging data, though these data were not analyzed here.

We targeted a sample of 60 participants to support multilevel interpretation of findings, ultimately enrolling 64 due to high interest. Achieving meaning saturation, rather than just code saturation, often requires larger samples, particularly in diverse populations or broad-scope studies.^60–62 Of these, 48 participants had at least one code indicating a direct or indirect experience of discrimination and comprised the analytic sample. In some cases, participants described poor treatment in ways that were more ambiguous. We erred on the side of inclusivity so that all potentially discrimination-related experiences were captured without imposing interpretations beyond participants’ accounts.

Data collection

Semi-structured, one-on-one interviews were conducted by trained undergraduate and graduate students in psychology and related fields. Training included didactic instruction on qualitative interviewing skills,^63–66 pilot interviews with unaffiliated mothers (N = 6), and group debriefs led by two PhD-level qualitative researchers.

Interviews were conducted virtually via Zoom between fall 2022 and spring 2023. Participants averaged 25.6 months postpartum (range 9.2–34.9). Participants were asked to find a private space at home, though with families quarantined, young children were sometimes present. Each interview lasted approximately 1 h, was audio-recorded, then transcribed verbatim. Spanish-language interviews were translated and quality-checked by bilingual team members who resolved ambiguities through discussion. Repeat interviews were not conducted, as participants had time to elaborate and raise additional topics.

Interviews followed a semi-structured guide designed to balance broad, open-ended questions with targeted probes (see Supplemental Table 1). For example, under the “pandemic experiences” domain, participants were first asked a broad question (e.g., “How did the pandemic affect you?”), with follow-up probes used as needed to elicit detail (e.g., illness, bereavement, or caregiving disruptions). Demographic data were drawn from surveys administered in the parent study at enrollment.

Study procedures were approved by the Columbia University Irving Medical Center Institutional Review Board for the historical cohort. Written informed consent was obtained from all participants prior to interviews. Participants selected for semi-structured interviews received $60 for their participation.

Statistical analysis

We employed a modified constructivist GTA, a flexible approach incorporating both inductive and deductive techniques allowing for theory-informed and emergent insights.^45,49,50 This framework enabled us to move beyond describing “what” participants experienced to probing “why” and “how” these experiences were shaped.^48,50 Consistent with Charmaz’s constructivist stance, we approached coding with the understanding that social processes are multilayered and co-constructed and that researcher perspectives inherently inform analytic outcomes.^50,67

Codebook development was multiphasic and iterative. It began with a priori domains drawn from the interview guide and expanded inductively to integrate content from transcripts. Coding was completed in Dedoose^® Version 9.0.107 (SocioCultural Research Consultants, LLC, Los Angeles, CA), with transcripts double-coded and discrepancies resolved by consensus. Codes were refined through analytic memos, consensus-based revision, and peer debriefing.⁶⁸ Coding proceeded through open, focused, and selective stages, with the final codebook including definitions and space for analytic notes.^46–48 We applied the constant comparative method across cases, and saturation was reached when no new codes or themes emerged.^46,47,68 The analytic subset (n = 48) included participants with at least one discrimination-related code. Within these, we analyzed responses relating to SDOH, discrimination, engagement and access to health care, and perceptions of care quality.

To enhance analytic transparency, Table 1 presents examples of how interview questions informed the coding framework. We adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines⁶⁹; the completed checklist is in Supplemental Table 2.

Table 1.

Illustrative examples of the coding process. This table is intended to demonstrate how broad interview guide domains informed the coding framework. Quotes are included as illustrative examples of how codes mapped on to domains.

Interview guide domain	Example codes/subcodes	Illustrative quote
Perinatal experiences	Complications (maternal or fetal)	“I have polycystic ovaries, and I was spotting and bleeding. . . . I never had a pelvic exam during the pregnancy, but I was pregnant with twins.” (Participant 31)
Pandemic-related experiences	Changes to accessing health care	“They told me I had to take my own stitches out.” (Participant 1)
Experiences of racism and discrimination	Discrimination based on ethnicity or race	“I just felt like I was being talked at. . . . And I think a lot of that had to do with, I don’t know, maybe implicit bias or whatever, because I am a Black woman, I am on Medicaid.” (Participant 30)

Researcher reflexivity

Our research team included 11 members: 4 conducted interviews only, 5 coded transcripts only, and 2 contributed to both. Four members were bilingual (English/Spanish), and the team was diverse in race/ethnicity (Hispanic/Latina, Black/African American, white, Asian, mixed race) and gender (female, male, genderfluid). None had prior relationships with participants or were involved in their clinical care.

We acknowledge that our social identities shaped the research process and influenced data collection and interpretation. Through reflexive dialogue and consensus-building, we worked to mitigate bias and strengthen interpretation.^48,50

Results

Population

Of 788 eligible participants, 138 were approached, and 64 consented. Of these, 48 had transcripts containing at least one discrimination-related code and were included in the analysis.

All participants had given birth during the COVID-19 pandemic (March 2020 to September 2021). Most gave birth in 2020 (65%), when pandemic-related disruptions were most acute. Maternal age ranged from 23 to 43 years, with most participants (61%) between 25 and 35 years. Nearly half identified as Hispanic/Latina, and participants reported racial identities including white, Black, Asian, multiracial, and other identities. Roughly one-quarter (23%) of interviews were conducted in Spanish, and 42% of participants were immigrants. Among the Spanish-speaking interviewees, 10 of 11 (91%) had immigrated to the United States from another country.

Participants were evenly divided between public and private insurance, serving as a proxy for socioeconomic status, and nearly half had a prenatal COVID-19 infection. Of the 30 participants who completed the EDS, 87% reported experiences of discrimination (Table 2).

Table 2.

Sociodemographic characteristics of participants (N = 48).

Baseline characteristic	n	%
Age
18–24	3	0.06
25–35	29	0.61
36+	16	0.33
Race
White	18	0.38
Black	10	0.21
Asian	1	0.02
Other Combinations not described	10	0.21
Native Hawaiian/Pacific Islander	1	0.02
American Indian or Alaskan	1	0.02
Declined	7	0.14
Ethnicity
Hispanic	21	0.44
Non-Hispanic	20	0.42
Declined	7	0.14
Maternal birthplace
Born in the United States	19	0.40
Immigrated to the United States	20	0.42
Unknown	9	0.18
Parity
Primiparas	20	0.42
Multiparas	24	0.50
Unknown	4	0.08
COVID-19 status during pregnancy
Positive	23	0.48
Negative	25	0.52
Insurance type
Commercial (private)	22	0.46
Public (i.e., Medicaid)	23	0.48
Unknown	3	0.06
Everyday discrimination scale score
⩾11	26	0.54
<10	4	0.08
Unknown	18	0.38

All participants in the study identify as women. For the full sample’s (n = 64) sociodemographic table, please see Supplemental Table 3.

Murky waters: an integrative concept

While participants described a variety of ways in which their perceived QoC during the pandemic was impacted, accounts of care were commonly situated within a climate of uncertainty, which we call the Murky Waters phenomenon. This concept captures the difficulty of discerning whether inadequate care stemmed from the pandemic, SRD, or both. This uncertainty, coupled with multiple stressors, left care feeling insufficient. This was particularly destabilizing given the importance of quality care during pregnancy, delivery, and postpartum, with undiscovered impacts on mothers and newborns amid a global health crisis.

This phenomenon underpins three of the four major findings that contributed to lowered perceived QoC: disrupted communication, lack of cultural sensitivity, and inaccessibility of medical resources. Distinct from these, the final theme of medical distrust emerged as both a driver and a consequence of low-quality perceived care, particularly among participants who had previously experienced discrimination.

Disrupted communications

Participants described how pandemic-related stressors worsened the perceived QoC they received from their providers. Communication was often uncivil, delayed, rushed, or even prejudicial, leaving some to feel like a low priority.

Many participants linked these negative interactions to the pressures providers faced during the pandemic. One participant recalled:

“Once I got seen, my appointment was so fast. I felt like I wasn’t asking enough questions and the doctor wasn’t asking me enough questions. I just felt like it was like a wham-bam. [Doctors] didn’t have time to be as concerned as they used to be.” (Participant 1: 25 y.o., not Hispanic/Black, the United States)

Beyond pandemic-related pressures, others felt their providers’ dismissals reflected racial prejudice:

“I knew absolutely I was a number on a page. It didn’t matter what I said, it didn’t matter if I made a joke, or [if] my cadence switched up. . . . She didn’t notice any of the anxiety that I had in my words to. . .speak to me with a little respect. And it really made me think, ‘Maybe I look really young, or I’m here, so you think that I’m poor, and that I’m a Black woman, and you can just talk to me any kind of way you want.’” (Participant 5: 37 y.o., not Hispanic/Black, the United States)

Some participants alternated between these explanations, reflecting the ambiguity of this period. Although Murky Waters typically emerged across the broader arc of interviews, in rare cases it appeared sharply within a single account:

“I just felt like I was being talked at. . .like they assumed I wasn’t educated enough and I think that’s why they made decisions for me. And I think a lot of that had to do with, I don’t know, maybe implicit bias or whatever, because I am a Black woman, I am on Medicaid. Maybe they were also understaffed and stressed because of the pandemic.” (Participant 30: 32 y.o., not Hispanic/Black, the United States)

Whether attributed to pandemic stressors, prejudice, or both, participants often described the downstream effect: feeling like a burden to their providers. One participant noted:

“I remember one of the appointments I went in and I had 15 questions. And by question number five, I could tell that I was already annoying her.” (Participant 29: 31 y.o., Hispanic/white, the United States)

Some participants, after repeatedly enduring what they felt was poor treatment, responded by silencing themselves in patient-provider interactions:

“[My provider] said: ‘We’ll talk later,’ but I had such strong pains, which seemed like a migraine. I wanted to know what was giving me those bad pains. Why so much unbearable pain? I didn’t know what else I could take because I was pregnant. I felt like no one cared about me even though I left messages. And at my appointment I didn’t even talk, because they abandoned me. I felt like I had no support, no one cared about me.” (Participant 25: 31 y.o., Hispanic/other combination, Mexico)

In other cases, dismissive communication crossed into outright disrespect, which participants linked not only to race or class but also to gendered dynamics in the clinical encounter. One participant described an unsettling visit in which her doctor primarily addressed her husband and was condescending when she asked questions, including when she raised the possibility of an unmedicated birth:

“He literally laughed in my face, literally laughed an audible laugh at me. I did not in that moment know how to process what was happening. It took me a second to realize whether he was serious. He was serious. He continued to be very dismissive of the idea that I would essentially have any control or autonomy or a voice in the process of how I gave birth.” (Participant 6: 36 y.o., not Hispanic/Black, the United States)

Lack of cultural sensitivity

Many participants in our sample felt that cultural sensitivity was deprioritized in health care during the pandemic. They recounted experiences of stereotyping, cultural biases, and disparities in treatment centered on their personal characteristics such as race, ethnicity, and/or factors like immigration status and native language.

One participant described the way in which anti-Asian prejudice, which spiked during the pandemic,^70,71 led to heightened anxiety even before entering hospital doors. This forced her to weigh her need to access medical care against the fear of racial persecution:

“When the pandemic started, most of us were afraid to go to the hospital. Because there, in the Harlem clinic, [there is] the camera that detects COVID. When you pass, it gives a light here on your forehead when you walk in the door. When you cough, even if it is the flu, people think it is COVID. At the beginning of the pandemic, many people were mean to Asians, they beat some of them in the street. That’s why we were very afraid.” (Participant 35: 26 y.o., Hispanic/Native Hawaiian/Pacific Islander, Mexico)

Beyond racialized prejudice, participants also described how stereotypes shaped providers’ judgments about their care. One participant felt that her provider relied on generalizations rather than her expressed preferences when discussing delivery options:

“My doctor actually said to me, ‘You can’t push because you’re Black, have high blood pressure and you’re over a certain age.’ I was like, ‘There has to be a way I can give birth without having to do a C-section. I want to push.’ [The doctor] said, ‘No, no, no, it’s risky.’ How risky can it be? She just kept giving me all types of excuses.” (Participant 4: 43 y.o., not Hispanic/Black, the United States)

Whether or not this stance reflected clinical caution, the patient perceived discrimination, which undermined her trust in the provider’s recommendations. This tension between legitimate medical risk and racialized stereotyping reflects the kind of blurred attribution that characterizes the Murky Waters phenomenon.

Participants also described being misidentified as belonging to other ethnic groups, which reinforced feelings of stigma in medical settings. One participant explained how exposure to stereotypes about Mexican women, despite being Ecuadorian, left her feeling ashamed when seeking care:

“Many people have talked to me saying: ‘Oh, the Mexicans come and here they are full of children, as if they only come here to give birth.’ So, I am not Mexican, I am from Ecuador, but I have been told [this] in a kind of indirect way. But it does give [me] a little bit of. . .like if I go to the hospital or somewhere with my two, three children, to an appointment, then I’m going to feel ashamed. . .because there are people that I have heard and I have seen. . .thinking that I am Mexican.” (Participant 23: 36 y.o., Ecuador)

Another participant recounted confronting a physician who assumed, based on her appearance, that she was Latinx and receiving care in a public maternal health clinic:

“I said, ‘I hope you know that you’re making assumptions based on what I look like.’ His face turned white. I said, ‘You cannot go in and see a patient and speak to them based on assumptions by what they look like. I speak Spanish and I often am confused for Latinx, which I have no problem [with] because I speak Spanish. But do not stereotype me.’” (Participant 15: 30 y.o., not Hispanic/white, Italy)

Language barriers were also a major source of exclusion. Participants frequently noted the absence of in-person translators, the reliance on virtual translation, and uncertainty about whether words exchanged were accurately conveyed. One participant doubted whether her translator was faithfully relaying messages:

“I think they looked at the fact that we are Hispanic and they were not even interested in me, nor did my doctors care about me. . .they put an interpreter there to speak and I don’t know if they are speaking what [the doctor] says or not.” (Participant 25: 31 y.o., Hispanic/other combination, Mexico)

Participants expressed a desire for culturally congruent care to facilitate better communication and support. Several noted the difficulty of finding providers of color, particularly when financial and insurance barriers were present. As one participant explained:

“Alternative care midwives and doulas are not covered by insurance. There’s a lot of Black and Latina midwives, but we can’t afford them without insurance. So, it’s just a crappy healthcare system all around that just makes it very difficult to be a pregnant woman in this country.” (Participant 29: 31 y.o., Hispanic/white, the United States)

Another participant adds that she yearns for a provider “who knows what it feels like to be different in the world.” (Participant 6: 36 y.o., not Hispanic/Black, the United States)

Inaccessibility of medical resources

Participants described struggling to receive timely and adequate care during the pandemic. Admittance to the hospital during this time brought with it substantial risk, including the possibility of contracting COVID-19 and infecting loved ones. These lapses in access to medically necessary resources were particularly destabilizing for patients who had already experienced discriminatory or exclusionary practices.

Of particular concern was the lack of access to medical services for both routine needs and emergency situations, caused by pandemic-related strain. One participant shared the panic she felt when her newborn son’s fever spiked and she felt no help was available:

“I had him in my arms, he was having a really high fever. . .his temperature wasn’t coming down. . .and my husband and I were just so worried, but there was nothing that we could do. The clinic would advise families whose babies were having a fever not to go into the clinic. They would say, ‘Try to give them medication at home for three days, and if they still have a fever, then call back again,’ and I don’t know what would follow.” (Participant 10: 34 y.o., not Hispanic/other combination, China)

Participants similarly lamented the lack of in-person pediatric appointments, particularly when providers would ask a mother and child to physically come into the clinic but were still only spoken to by phone in an isolated room:

“And the appointment was that they sent me [to the clinic] to take my blood pressure, my weight and to check the baby’s heart. Over the phone, how are you going to check it? I mean, how are you going to take my blood pressure? I told [the receptionist]: ‘When it is by phone, you better tell me it is by phone so I don’t come.’” (Participant 36: 36 y.o., Hispanic/other combination, Mexico)

The disruptions to care-as-usual were compounded by the depletion of other systems, such as household income.

This same participant adds:

“Do I spend my [subway] ticket to come here? I have no money, my husband is out of work, I cannot come and go just to come and waste my time.”

Even when services were available, participants often had to be in critical condition to receive examinations. One participant described her frustration with the lack of obstetric attention during her high-risk pregnancy:

“The only time I had a pelvic exam during my pregnancy with the twins was when I went to the emergency room right after I found out I was pregnant. I have polycystic ovaries, and I was spotting and bleeding. . . . I never had a pelvic exam during the pregnancy, but I was pregnant with twins. It was very frustrating because I felt like I didn’t get the medical necessities that I would’ve if it wasn’t COVID. Everything was pushed to the side. And then once they found out I was pregnant with twins, they were like, ‘Oh, you’re high risk. We need to see you physically.’” (Participant 31: 29 y.o., Hispanic/Black, the United States)

Specialized support, too, was in scarce supply. Many participants voiced dissatisfaction with the lack of available lactation consultants, mental health resources, and translators for non-native English speakers.

One participant shared that her already-difficult breastfeeding experience was made worse when the lactation specialist was unwilling to meet with her without another negative COVID test by describing the seeming inaccessibility or extra obstacles to overcome as “a slap in the face” (Participant 40: 31 y.o., Dominican Republic). The sentiment expressed in this case suggests a sense of personal mistreatment beyond frustration with service disruption.

Other participants described how the loss of specialized supports affected their children’s development. One mother expressed her frustration with trying to access early intervention services for her toddler and the impracticality of telehealth for this need:

“We couldn’t get a speech therapist and a physical therapist for [her son], we tried to have telehealth sessions for him and with a little toddler, it was impossible because he was just running around and I was just holding a phone, chasing after him. He could not understand what this stranger was trying to do on the phone.” (Participant 10: 34 y.o., not Hispanic/Other combination, China)

Even when a provider was available, sometimes medically necessary follow-up was not guaranteed. One participant described the shock she felt when she was told to perform her own postsurgical care following a Cesarean section:

“They told me I had to take my own stitches out. I had visible stitches underneath my whole stomach. They wanted me to take it out. They said, ‘You just wait two weeks, wait until your incision close up and then when you’re done, you just pull your things off.’ I don’t think that’s something that a person that just gave birth should be doing. . .but they say, ‘Hey, you on your own, deal with your stitches on your own, deal with your baby at home.’” (Participant 1: 25 y.o., not Hispanic/Black, the United States)

Medical distrust

While ambiguity about the source of their poor treatment was often central to participants’ accounts, many described a more definitive outcome: medical distrust. Several participants described waning trust in their providers and the health care system, either due to poor care during the pandemic or from preexisting distrust that was further exacerbated by their pandemic experiences.

In many cases, underlying participants’ distrust was their fear that their health care providers either lacked knowledge or did not have their best interests at heart. Participants described being hypervigilant around health care staff and often linked their distrust to experiences of racial or ethnic discrimination.

Some participants felt so mistrustful of health care staff even before entering the hospital that they feared their lives would be at risk during childbirth:

“A lot of young women died during childbirth during the pandemic and a lot of them didn’t die for stuff related to COVID, they just died because the doctors weren’t doing their job properly, so that was my fear when I was going in to give birth.” (Participant 28: 27 y.o., Hispanic/white)

One mother remembered feeling panicked in the hours after birth, unwilling to trust any medical professionals to watch her baby while she slept:

“They’re like, ‘The nurses will take care of her. Don’t worry.’ I was like. . . ‘I want [my baby] right next to me. I want someone I trust [there] while I take a nap’. . .She was like, ‘No, I’m sorry.’ I started crying. I was like, ‘Please just leave [the baby]’. . . .I didn’t trust no one.” (Participant 48: 23 y.o., Hispanic/other combination, the United States)

Some participants felt that even if providers were able to provide care amidst the crisis conditions, they were less likely to do so in their case. When asked about what role trust played in her perinatal health care experience, one participant said:

“I didn’t feel confident. On the contrary, what you feel is insecure. You feel fearful, because you say: ‘I am in a situation where I need help, but whoever can help me, doesn’t do it.’” (Participant 18: 36 y.o., Hispanic/other combination, Dominican Republic)

This participant goes on to explain how ethnicity may have played a role in her care:

“Maybe being Hispanic makes them treat you differently. Sometimes people who are, in the sense, like non-Hispanic or American people here per se, a lot of them don’t treat Hispanics well. I have had many experiences with other doctors and many American people have been very, very good, but others, when they see that it is a Hispanic person, it kind of changes the situation.”

Many participants described being driven by feelings of distrust to do their own research to “check” health care recommendations. One participant describes questioning her provider’s recommendation that she take Zofran (ondansetron) for her nausea, despite this drug being a commonly prescribed and safe medication for pregnant women:^72–74

“I told you that I had headaches throughout the entire pregnancy, and the nausea, and [my doctor] never addressed those head on. It wasn’t until I was like, ‘I have not eaten anything in five days,’ that she gave me Zofran. And then of course, I went and did my research and there’s a high miscarriage rate and a class action lawsuit against Zofran. I was like, ‘I’m not taking this. Are you kidding me?.’” (Participant 29: 31 y.o., Hispanic/white, the United States)

Another participant expressed her frustration that her nurse mistook her daughter’s Mongolian spots, a common dermatologic gray-blue hued patch of hyperpigmented skin often seen in Black and Asian infants,⁷⁵ as a sign that she was abusing her daughter. This accusation left her questioning both the medical and cultural competence of her providers:

“My daughter was born with these spots on her body. The nurse thought I was abusing my baby after I gave birth because she didn’t know that my daughter had Mongolian spots. . .I had to inform the doctors about things that they should know because they work in healthcare. I’m in the hospital with these people that have been here longer than me and I’m informing you about information.” (Participant 1: 25 y.o., not Hispanic/Black, the United States)

Others described providers withholding information, which they believed was linked to racial prejudice:

“I’m not trying to disrespect anyone, but doctors sometimes don’t tell you everything that you need to know, and that’s why people don’t trust doctors. And also, now I know that when it comes time to advocate, not just for myself, but for my kids, at the end of the day, my color doesn’t change.” (Participant 17: 23 y.o., not Hispanic/Black, Mali)

Some participants described avoiding care altogether because of their negative experiences:

“If I don’t have a doctor’s appointment that’s like a legal checkup or my kids don’t have a legal doctor’s appointment, I’m not going because of the experiences that I’ve had with going into these hospitals. . .” (Participant 2: 26 y.o, Black)

Discussion

The COVID-19 pandemic unfolded against a backdrop of longstanding racial and social inequities in U.S. maternal health. Women of color and immigrant women face disproportionate risks of maternal morbidity and mortality, with SRD and SDOH shaping their access to QoC. This study contributes to this literature by centering mothers’ lived experiences of perinatal care and showing how individual encounters reflected systemic inequities magnified by the pandemic.

Taken together, our findings suggest that participants’ interpersonal experiences of mistreatment should not be read in isolation, but as symptomatic of larger systemic forces. Just as a fever signals an underlying infection, these accounts represent visible manifestations of the influence of SRD and related SDOH. The pandemic magnified these inequities, making structural forces that are usually obscured feel immediate and undeniable in participants’ lives.

This is captured in what we have conceptualized as the Murky Waters phenomenon: Participants struggled to determine whether their mistreatment stemmed from pandemic-related disruptions, discrimination, or the confluence of the two. While some attributed their experiences to clear bias and others to the milieu of the pandemic, many oscillated between the two, seemingly trying to decipher it in real-time during their interviews. Prior research suggests that ambiguous forms of discrimination may produce greater stress than overt acts because of this uncertainty.⁷⁶ In our study, this uncertainty emerged as an additional burden, with implications for maternal well-being. It shaped participants’ accounts of disrupted communication, cultural insensitivity, and resource inaccessibility, while medical distrust surfaced as a distinct but related theme (see Figure 1.)

Figure 1.

Working model of qualitative findings leading to a decline in perceived QoC during the COVID-19 pandemic.

Although the pandemic disrupted perinatal care broadly,⁷⁷ women of color and immigrants in our sample reported especially negative experiences. This reflects the concept of “double jeopardy” in which individuals belonging to multiple marginalized groups endure compounded discrimination.⁷⁸ Our cohort faced both pandemic-related health care strain and discrimination-based stress, amplifying challenges and disrupting care, aligning with others’ qualitative work in this population.^24,30,79,80 These accounts echo prior research describing how overlapping social determinants, such as racism and socioeconomic disadvantage, compound perinatal risks, described by participants themselves as being “double slammed.”⁷⁹ Yet in this context, it can be argued that these inequities were further magnified by the structural vulnerabilities in U.S. maternal health care,^18,81,82 creating a convergence of forces that left participants vulnerable to poor care.

Participants described implicit and explicit bias in perinatal care, including racial assumptions, disinterest, and dismissal of their preferences and pain. They often felt deprioritized and monitored their behavior or silenced concerns, linking this treatment to race, immigrant status, or insurance type. As a result, clinical encounters shifted away from addressing their health needs and toward managing how they were perceived, a finding detailed in prior research.^83,84 Strong provider-patient relationships are foundational to high-quality care,^37,85 yet perceived discrimination undermines this relationship, disrupts effective communication,⁸⁰ and, as shown in pandemic-era studies, drove patients to grow self-conscious and feel compelled to self-advocate.^24,86

In the pandemic environment, many participants were unable to give birth as imagined. This loss of control is significant as the degree of agency a person has in their birthing environment has been shown to predict their perception of the childbirth experience.⁸⁷ Early containment measures were a prudent response to a novel virus in 2020, yet they carried unintended consequences for maternal care. Birth plans and preparation are an established protective factor against adverse birth outcomes and reductions in maternal distress;^88–93 thus, this abrupt change likely contributed to negative effects on labor and delivery care experiences and postpartum outcomes, as documented in quantitative,^9,80 qualitative,^30,77,80 and mixed-methods research.^4,23

For women of color and others facing health inequities, these impacts were especially acute. Previous research shows that disregarding patient preferences can undermine obstetric care experiences⁸⁰ and that racial stereotyping in medical spaces contributes to implicit bias and adverse health outcomes.^28,31,94 In our study, some participants described feeling pressured to follow certain birth protocols; those encouraged toward Cesarean deliveries or dismissed when preferring unmedicated births questioned whether their race or ethnicity influenced these encounters. Although studies have documented increased Cesarean section pressure during the pandemic,^4,95,96 evidence on racial differences is mixed.²³ Our participants’ accounts suggest that these pressures were often experienced through a racialized lens, highlighting the value of qualitative approaches.

Medical distrust shaped perinatal care at multiple levels: deterring care-seeking, influencing provider interactions, and shaping perceptions of care received. Although well-documented prior to COVID-19, particularly in minority communities,^97,98 trust in medicine became especially critical during the pandemic as pregnancy and the novel coronavirus demanded increased engagement with health services. Fearing inadequate treatment, some participants described becoming hypervigilant, questioning provider guidance, and turning to alternative sources of advice. Similar concerns have been documented pre-pandemic, with Black patients reporting a “generalized worry” that providers might overlook important health issues due to racial bias or limited knowledge.³⁷ Pandemic-era studies found perinatal patients who distrusted medical advice often sought alternative information.³⁰ Our participants described similar behaviors, turning to the internet to supplement provider guidance, risking misinformation.^14,98

Both major and subtle acts of discrimination fueled distrust, creating a priming effect in which patients who had experienced bias became more likely to anticipate it in future interactions.^{76,94,99–101} In other words, prior experiences heightened vigilance toward potential mistreatment whether bias was present.⁹⁹ At the same time, the discrimination participants perceived reflects how health care providers’ biases, conscious or otherwise, can shape clinical encounters.⁴⁰ The pandemic disrupted typical hospital interactions, amplifying these dynamics on both sides of the encounter. Whether implicit bias rose during this period is unclear, but provider bias is known to shape treatment, adherence, and outcomes.^40,102

This cycle of distrust shaped patient-provider interactions during the pandemic and may contribute to long-term avoidance of medical care, which for postpartum women can be deadly.⁹⁸ Participant accounts illustrate how the pandemic created a climate of uncertainty that magnified existing inequities,¹⁰² with medical distrust crystallizing as both a contributor and a consequence of these conditions. Several reported that these experiences dissuaded them from seeking future care for themselves or their children, reinforcing the cycle of health disparities in the very communities already burdened by SRD.

Implications

Medical distrust emerged as both a driver and a consequence of poor QoC. Distrust within the patient-provider relationship may cause an “othering” process, in which both parties view the other as fundamentally separate, with conflicting needs.¹⁰³ The COVID-19 pandemic has shown us that the health of one is tied to the health of all.

Although protecting frontline workers was paramount, infection-control protocols often had unintended consequences for perinatal populations most at risk.^22,104 Early in the pandemic, hospitals faced a choice: allow support persons in the delivery room, a known protective factor for maternal and infant outcomes,^105,106 or restrict visitors to protect the hospital ecosystem. While prudent against an emerging threat, policies barring support persons increased psychological distress,^27,107 impaired bonding,^108,109 and exacerbated health disparities.^22,27 Niles et al. argue that such responses worsened preexisting drivers of maternal morbidity and mortality among women of color,²² who are nearly three to four times as likely to experience such outcomes in the United States.^81,82,110 Significantly, advocacy organizations, such as Human Rights in Childbirth, reported that pandemic hospital policies such as those separating mothers and newborns constituted human rights violations, with disproportionate harm to women of color.¹¹¹

Future crisis policies should prioritize patient-centered care with explicit attention to race consciousness and health equity.¹⁴ This requires moving beyond present-focused decisions toward more future-oriented planning. Landucci and Lamperti describe the “pandemic of cognitive bias,” in which health systems responded hastily and with questionable judgment.¹¹² Halpern et al. similarly argues that pandemic responses reflected cognitive biases that prioritized visible, immediate threats over statistical risks and long-term consequences, while disregarding evidence-based science. These biases fueled rash decisions, such as approving dissemination of experimental medications, before implementing preventive strategies to slow disease spread.^112,113

Reinforcing Niles et al.’s concern that policies once deemed necessary may carry lasting consequences, our findings highlight the need for evidence-based crisis planning that prioritizes both long-term health and immediate safety.²² Consistent with other qualitative studies among racial minorities during COVID-19, our results suggest that strengthening perinatal care requires institutional awareness of structural barriers and SDOH, centering patient experiences,¹⁴ and identifying weaknesses in equitable infrastructure before the next crisis compounds existing vulnerabilities.

Limitations

Several limitations warrant mention. First, these interviews reflected birth experiences largely from 2020 (65%), yet were conducted between 2022 and 2023, when children were approximately 24 months old, raising the possibility of recall bias. Another limitation is that our research team is nested within a major hospital system, meaning our hospital-based recruitment methods likely excluded mothers with higher medical distrust who avoided hospital-based perinatal care altogether. Similarly, mothers with high medical distrust may have filtered responses, viewing us as part of the hospital system tied to their future care. Additionally, because EDS data were incomplete, we relied on transcripts coded for discrimination, limiting survey-based insights but ensuring all 48 participants described such experiences in their own words. Lastly, our findings are not generalizable beyond the mothers represented here. Their accounts show how, for some, the pandemic marked a first encounter with discrimination, while for many others, largely women of color and immigrant women, it echoed a longer history of exclusion and adverse outcomes.

Conclusion

The COVID-19 pandemic exposed and deepened systemic disparities in access to adequate care. Addressing the drivers of lowered perceived QoC through policy reform is essential, given the compounding effects of toxic stress on perinatal patients. As future pandemics are likely to recur, this moment offers an opportunity to confront inequities and build a more equitable, sustainable health care system that uplifts communities most affected.

Supplemental Material

sj-docx-1-whe-10.1177_17455057251414921 – Supplemental material for Low trust, high barriers: A qualitative study of perinatal care experiences in New York City during the early COVID-19 pandemic

Supplemental material, sj-docx-1-whe-10.1177_17455057251414921 for Low trust, high barriers: A qualitative study of perinatal care experiences in New York City during the early COVID-19 pandemic by Marissa Lanoff, Katrina Fuller, Diana More, Esther Greeman, Margaret Kyle, Cynthia Rodriguez, Diego R. Álvarez Vega, Sol Quincoses, Melisa Isado, Maya Hafeez, Zoe Sanders, Rachel Marsh, Dani Dumitriu, Kelli Hall and Clare McCormack in Women's Health

Supplemental Material

sj-docx-2-whe-10.1177_17455057251414921 – Supplemental material for Low trust, high barriers: A qualitative study of perinatal care experiences in New York City during the early COVID-19 pandemic

Supplemental material, sj-docx-2-whe-10.1177_17455057251414921 for Low trust, high barriers: A qualitative study of perinatal care experiences in New York City during the early COVID-19 pandemic by Marissa Lanoff, Katrina Fuller, Diana More, Esther Greeman, Margaret Kyle, Cynthia Rodriguez, Diego R. Álvarez Vega, Sol Quincoses, Melisa Isado, Maya Hafeez, Zoe Sanders, Rachel Marsh, Dani Dumitriu, Kelli Hall and Clare McCormack in Women's Health

Supplemental Material

sj-docx-3-whe-10.1177_17455057251414921 – Supplemental material for Low trust, high barriers: A qualitative study of perinatal care experiences in New York City during the early COVID-19 pandemic

Supplemental material, sj-docx-3-whe-10.1177_17455057251414921 for Low trust, high barriers: A qualitative study of perinatal care experiences in New York City during the early COVID-19 pandemic by Marissa Lanoff, Katrina Fuller, Diana More, Esther Greeman, Margaret Kyle, Cynthia Rodriguez, Diego R. Álvarez Vega, Sol Quincoses, Melisa Isado, Maya Hafeez, Zoe Sanders, Rachel Marsh, Dani Dumitriu, Kelli Hall and Clare McCormack in Women's Health

Footnotes

Acknowledgements

I thank the COVID-19 Mother Baby Outcomes (COMBO) team for their support at every stage of this project. I am also grateful to Andrea Bloom for her careful copyediting and commitment to the clarity of this work. Above all, I thank the remarkable mothers of this cohort, whose candid and powerful stories will help shape future policy and drive meaningful change.

ORCID iDs

Marissa Lanoff

Katrina Fuller

Diana More

Esther Greeman

Margaret Kyle

Cynthia Rodriguez

Diego R. Álvarez Vega

Melisa Isado

Maya Hafeez

Rachel Marsh

Dani Dumitriu

Ethical considerations

This study was approved by the Columbia University Irving Medical Center Institutional Review Board (IRB# AAAT0018).

Consent to Participate

All participants provided written informed consent prior to participation.

Consent for publication

All participants provided consent for publication of de-identified data as part of the study’s informed consent process.

Author Contributions

Marissa Lanoff: Conceptualization; Investigation; Funding acquisition; Writing - original draft; Writing - review & editing; Validation; Methodology; Visualization; Formal analysis; Project administration; Software; Data curation; Supervision; Resources.

Katrina Fuller: Conceptualization; Investigation; Funding acquisition; Writing - original draft; Methodology; Validation; Visualization; Writing - review & editing; Software; Formal analysis; Project administration; Resources; Supervision; Data curation.

Diana More: Conceptualization; Investigation; Methodology; Formal analysis; Software; Data curation; Writing - review & editing.

Esther Greeman: Conceptualization; Investigation; Writing - review & editing; Data curation; Software; Formal analysis.

Margaret Kyle: Software; Investigation; Conceptualization; Writing - review & editing; Visualization; Validation; Project administration; Supervision.

Cynthia Rodriguez: Investigation; Methodology; Writing - review & editing; Software; Formal analysis; Data curation; Supervision.

Diego R. Álvarez Vega: Supervision; Investigation; Conceptualization; Writing - review & editing; Methodology; Software; Formal analysis; Data curation.

Sol Quincoses: Conceptualization; Investigation; Methodology; Writing - review & editing; Software; Formal analysis; Supervision; Data curation.

Melisa Isado: Conceptualization; Writing - review & editing; Formal analysis; Data curation; Supervision; Investigation.

Maya Hafeez: Conceptualization; Investigation; Methodology; Formal analysis; Software; Supervision; Writing - review & editing.

Zoe Sanders: Writing - review & editing; Formal analysis; Software.

Rachel Marsh: Writing - review & editing; Funding acquisition; Investigation; Formal analysis; Supervision; Methodology; Validation; Visualization.

Dani Dumitriu: Writing - review & editing; Funding acquisition; Validation; Visualization; Project administration; Data curation; Supervision; Resources; Conceptualization.

Kelli Hall: Writing - review & editing; Conceptualization; Investigation; Funding acquisition; Methodology; Validation; Visualization; Project administration; Resources; Supervision; Data curation; Formal analysis.

Clare McCormack: Data curation; Supervision; Project administration; Resources; Writing - review & editing; Writing - original draft; Funding acquisition; Investigation; Conceptualization; Methodology; Validation; Visualization; Formal analysis.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute for Mental Health [R01MH12653; 01MH126531-01S1].

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

The complete interview guide is available as a Supplemental Material. Additional study materials, such as the full codebook, may be available from the authors upon request. Further information regarding the COMBO Initiative can be found at .

Supplemental material

Supplemental material for this article is available online.

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