Near-miss and maternal sepsis mortality: A qualitative study of survivors and support persons

Abstract

Background:

Prior studies have shown that maternal deaths due to sepsis occur due to delays in recognition, treatment, and escalation of care through medical chart reviews. This study was conducted to obtain the patient perspective for near-miss and maternal mortality cases due to sepsis.

Objective:

To identify quality improvement opportunities for improving maternal sepsis through patient and support person experiences.

Study design:

Twenty semi-structured interviews and three follow-up focus groups with patients who experienced critical illness from maternal sepsis in the United States and their support persons (when available) were conducted from May 23, 2022, through October 14, 2022. In this qualitative study, data were analyzed using inductive thematic analysis.

Results:

In this qualitative study of patients with maternal sepsis and their support persons, four main quality improvement themes were identified. The themes were the following: (1) participants reported a lack of awareness of pregnancy-related warning signs and symptoms of when to seek care, (2) many of the presenting symptoms participants experienced were not typical of expected warning signs of maternal sepsis, such as severe pain, overwhelming tiredness, and lack of fever (3) participant concerns were met with dismissal leading to delays in diagnosis, (4) participants experienced long-term sequelae but had difficulty receiving screening and referrals for treatment.

Conclusions:

The findings of this study suggest that standardized patient education about the warning signs of maternal sepsis and provider education about the presentation of maternal sepsis, improved listening to patients, and follow-up for sequalae of sepsis are needed.

Tweetable statement

Standardized patient education about warning signs of maternal sepsis, provider education about presentation of maternal sepsis, improved listening to patients, and comprehensive follow-up are needed.

Introduction

Maternal sepsis is one of the leading preventable causes of maternal mortality in the United States [1,2]. Studies describing maternal mortality from sepsis highlight delays in these critical areas: delays in recognition of sepsis, delays in prompt appropriate treatment, and delays in escalation of care [3,4]. These delays occur in part because of the unique characteristics of maternal sepsis when compared with cases of sepsis in non-pregnant patients. First, 20–25 % of maternal sepsis patients do not become febrile [4–6]. Second, normal physiological changes of pregnancy are similar to the signs of developing sepsis. Additionally, during early pregnancy and the postpartum period, patients may seek care in non-obstetric settings, such as emergency departments, urgent care centers, and hospitals without labor and delivery units [5,7]. Unfortunately, many patients die at home without seeking care or present too late to clinical care [3,4]. It is unclear, however, whether these patients were unaware of warning signs to seek care or whether health care providers failed to address their symptoms adequately.

Previous studies, primarily composed of medical record reviews, lack the benefit of the patient’s perspective [3,4]. Most studies have relied on administrative claims data or maternal mortality review committee proceedings, and little is known about the symptoms, clinical course, and missed opportunities for patients with sepsis. This study aims to identify barriers to care for maternal sepsis and quality improvement opportunities through patients’ experiences with sepsis.

Materials and methods

This descriptive phenomenological study used in-depth, semi-structured interviews with birthing persons (and support persons, if applicable) and follow-up focus groups to obtain in-depth information about the symptomatology, health care response, and quality improvement opportunities from the patient’s perspective. This approach was key to understanding quality improvement opportunities. The Institutional Review Boards at Stanford University, and Wayne State University reviewed and approved this study. The Institutional Review Board at Duke University designated it exempt. The Standards for Reporting Qualitative Research were followed [8].

We used a purposive sampling technique to identify participants who were knowledgeable about the barriers to care for maternal sepsis. Inclusion criteria for experience with maternal sepsis were admission to the intensive care unit for critical illness with a diagnosis of maternal sepsis (during pregnancy and up to 42 days postpartum) through personal experience or through serving as a support person through that experience. Three types of participants were interviewed: 1) maternal sepsis survivors, 2) support persons of a sepsis survivor, and 3) support persons of a person who died of maternal sepsis. Support persons were invited to provide clarity (if available), especially for those periods of confusion or sedation during the patient’s critical illness.

Interview guides were co-created iteratively with the research team, qualitative study experts, and members of the Maternal Sepsis Community Leadership Board (MSCLB). This is a group of maternal sepsis survivors, health equity experts, community leaders, and public health experts who partnered with the research leadership team to co-lead research with patient and community input. The interviews and focus groups were piloted with members of the MSCLB and clinical team to test for clarity and flow prior to the launch of the study. Interview and focus group guides were created based on the 5 R Framework used in the Alliance for Innovation on Maternal Health (AIM program) maternal safety bundles to identify areas for improvement based on patient perspectives [9]. The 5 R Framework and definitions are presented in Table 1. Patients were asked about their symptoms, clinical course, interaction with health care providers, instances of bias during receipt of health care, follow-up, patient’s experience seeking emotional closure, and follow-up thoughts about their experience. They were also asked about their perception of Urgent Maternal Warning Signs (UMWS) and for suggestions about patient education [10]. The UMWS was developed in 2020 by the Council on Patient Safety in Woman’s Health Care, and was adopted in 2021 by the AIM Program [9]. UMWS is a set of warning signs potentially indicating impending maternal morbidity. Patients were asked to describe the symptoms of sepsis they experienced; those symptoms were reported as predominant symptoms. Participants were then shown the UMWS tool and additional symptoms were reported as recalled symptoms after being shown the UMWS tool.

Table 1.

The 5 R framework for Quality Improvement in Maternal Health.

Bundle Element	Description
Readiness	Readiness elements speak to preparations that units, facilities, and communities can take before a clinical condition or event occurs to establish a foundation to optimize care.
Recognition & Prevention	Recognition and prevention elements are focused on early awareness or avoiding altogether the development of a clinical condition or event. Elements for recognition and prevention primarily focus on performance of screenings and unit or institutional use of standardized evaluation protocols.
Response	Response elements address how a care setting can optimize care when a clinical condition or event occurs for the best possible outcome. Elements to address response include following best practices and transitions to appropriate levels of care or access to resources when an event or condition is noted to be happening.
Reporting & Systems Learning	Reporting and systems learning elements outline how evaluation and structures can be put into place to sustain and support optimal care and improve practices and procedures.
Respectful Care	Respectful care elements explicitly call out elements that center respectful, equitable, and supportive care. While Respectful care elements address concepts supporting equity and antiracism in care that might not be covered under other “Rs,” these concepts and supports are not exclusive to this heading.

The qualitative research team was made up of four qualitative researchers who facilitated all interviews and focus groups (GN, LF, KS, and SLP) and analysis (SLP and KS). The study team recruited participants through social media (i.e., Facebook, Twitter, and Instagram) by sharing the flyer inviting survivors who experienced maternal sepsis or who had a loved one who died from maternal sepsis to contact the research team by email if interested in participating. The study team also reached out to sepsis and maternal morbidity patient advocacy groups to share the flyer with potential participants. The MSCLB assisted with disseminating flyers to private survivor Facebook pages, rural communities, Tribal communities, health equity organizations, sepsis organizations, and community-based organizations. Potential participants were screened to verify eligibility, informed consent was obtained, and interviews were conducted between April 2022 and October 2022. Maternal survivor and support person participants were each provided a $75 Visa Gift Card as compensation for participation. Interviews were audio recorded and transcribed verbatim. The semi-structured interview and focus group guides are presented in Supplementary Material.

The research team employed an inductive thematic analysis approach in this study. Two experienced qualitative researchers (SLP, KS) independently reviewed completed transcripts. They began by independently performing memo-writing and coding of three randomly selected interview transcripts for initial coding. The team 1) met to discuss the relevance and definitions of the codes; 2) compared codes and discussed discrepancies to ensure consensus on the application of codes and refine the codes and code definitions; 3) applied the codes to three different randomly selected interview transcripts to further refine the codes; and 4) revisited earlier transcripts as new codes we identified and categorized for the final codes. The 5 R Framework was applied to the final codes to make sense of the relationships among the codes and concepts. Summary statements of recurring and noted data outliers of the framework were documented. Major themes were established by aligning the codes with the 5 R Framework through team discussion and review of memos. The study team agreed that no further data collection and recruitment would be needed once data saturation was achieved. In prior studies, this may occur in as little as 9–17 interviews but may require 20–24 interviews [11].

Results

We conducted 20 interviews. Twelve were conducted with the maternal sepsis survivor alone, seven were conducted with the survivor and her support person and one interview was conducted with a support person alone whose partner did not survive. Characteristics of participants are presented in Table 2. Participants’ predominant and recalled symptoms were reported in Table 3. Themes identified and exemplary participant quotes are presented in Table 4. Theme saturation was achieved with 20 interviews. The 5 R framework organizes our findings.

Table 2.

Demographics of interviewed maternal sepsis survivors and support persons.

Characteristics	N (%)
Interview with patient only	12 (60 %)
Interview with maternal sepsis survivor and support person	7 (35 %)
Interview with support person only (due to maternal death)	1(5 %)
Age at time of sepsis
Mean (range)	32.4 (20–40)
Year sepsis occurred
2010–2014	2 (10 %)
2015–2019	10 (50 %)
2020–2022	8 (40 %)
Race and ethnicity
Participants (19) *
White	12 (63 %)
Black/African American	5 (26 %)
American Indian	2 (11 %)
Asian Pacific Islander	1 (5 %)
Hispanic	4 (21 %)
Non-Hispanic	15 (79 %)
Support Person (8)
White	5 (63 %)
Black/African American	1 (13 %)
American Indian	0
Asian Pacific Islander	0
Missing	2 (25 %)
Hispanic	3 (38 %)
Non-Hispanic	5 (63 %)
Region of the United States
Northeast	5 (25 %)
Midwest	4 (20 %)
South	5 (25 %)
West	3 (15 %)
Missing	3 (15 %)

^*Adds up to more than 100% because some patients identify as more than one race.

Table 3.

Participant symptoms of sepsis.

	Predominant	Symptoms recalled
	Symptoms	once shown UMWS
Urgent Maternal Warning Signs
(UMWS)
Headache	2 (10%)	5 (25%)
Dizziness or Fainting	6 (30%)	2 (10%)
Thoughts about hurting yourself or	0	0
your baby
Changes in vision	0	1 (5%)
Fever	8 (40%)	3 (15%)
Trouble Breathing	4 (20%)	4 (20%)
Chest pain or fast beating heart	4 (20%)	8 (40%)
Severe belly pain that will not go	9 (45%)	2 (10%)
away
Severe pain in other areas	3 (15%)
Severe nausea and throwing up (not like morning sickness)	4 (20%)	4 (20%)
Baby’s movements stopping or slowing	3 (15%)	1 (5%)
Vaginal bleeding or fluid leaking during pregnancy	2 (10%)	1 (5%)
Swelling, redness or pain of your leg	1 (5%)	2 (10%)
Extreme swelling of your hands or	1 (5%)	1 (5%)
face
Swelling at 3rd degree tear site	2 (10%)
Swelling in abdomen	1 (5%)
Overwhelming tiredness	8 (40%)	8 (40%)
Additional symptoms (not part of UMWS) reported by the patient
Other:
Signs of severe dehydration
Inability to make tears when crying	1 (5%)
Abrupt stopping of milk production	2 (10%)
Unable to make urine	4 (20%)
Shaking Chills (unclear if associated with fevers per patient account)	9 (45%)
No appetite	3 (15%)
Blisters on skin	1 (5%)
Mental status changes	4 (20%)
Foul smelling discharge	2 (10%)

^*Percentages add up to more than 100% due to patients having more than one symptom.

Table 4.

Patient Barriers to Maternal Sepsis Care identified in qualitative interviews and follow-up focus groups in participants (and support persons) with lived experience of sepsis.

Patient Barriers to Maternal Sepsis Care
Themes	Patient Quotes
Readiness
Participants were unaware of warning signs to prepare them for when to seek medical care	“If I had known that was a sign to look for, I would have known it when I saw it.” [Participant 11] “If they had said be on the lookout for these symptoms, if you have any of them, call and check in. If they had taken five minutes to do that, I think it would’ve made a huge difference.” [Participant 8]
Recognition
Among participants’ early symptoms of sepsis, severe pain was the leading symptom	“ I still was in a lot of pain, and I couldn’t walk, and I was told because I had an emergency C-section that it was normal for me to be in that pain” [Participant 6] “…I went in 10 days later, just woke up in excruciating pain like I couldn’t even stand up on my own” [Participant 2]
Participant symptoms were dismissed and labeled as “normal” for just having a baby	“She’s dismissed there and throughout the whole stay whenever we brought these things up it was, ‘you just had a baby, everything’s okay. Don’t worry, you just had a baby,’ and that was the recurring theme throughout our stay.” [Support Person 1] “…I was telling all my symptoms, but I was basically just getting like, ‘Oh, that’s normal. That’s normal.’” [Focus Group 3 Participant]
Participants reached out on multiple occasions	“I started calling my doctor’s office, which routes you to the advice nurse and just saying like, you know, I’m not feeling well, like I’m feeling really, really sick. She was like, ‘you’re just dehydrated, you know, drink lots of water, you’re too dehydrated, you need to just rest and drink tons of water.’ I talked about exhaustion and chills. They were really hung up on me not having a fever.” [Participant 8] “I called the doctors twice a couple of days after I was released saying oh you know, like I’m not feeling well, I’m having diarrhea, low blood pressure, low fever and they’re like oh no, don’t worry, you just had a C-section. You’ll be fine.” [Focus Group 1 Participant]
Dismissal of participants’ symptoms led to delays in diagnosis	[About symptoms] “We told everybody. We were asking nurses. We were asking doctors because I had a big stack of doctors at that time. My family kept asking ‘why is her stomach like that’ and I remember my mother-in-law hollering at people like somebody needs to do something about her belly. And it was like we would talk, talk, talk and nobody would really get what we said.” [Participant 3] “I don’t feel like they ever took my concerns seriously. I feel like rather than looking into my issues and what the root of those problems were, they were brushing me off and trying to get rid of me.” [Participant 9]
Response
Participants viewed medical staff’s explanation of participants’ condition and the timeliness of their communication as problematic	“I only knew that I had sepsis when… I saw in my discharge instructions later on that said that I had been admitted for sepsis.” [Participant 11] “I wasn’t informed, never verbally, that I had sepsis. So, I came to find [I had] sepsis after reading some of my medical notes in my chart and then researching on my own. “ [Participant 6]
Participants had mixed views of the quality of care they received	“I felt that if I was respected, I would’ve been listened to.” [Participant 6] “There wasn’t quality care. There wasn’t any care or concern [from health care team].” [Participant 20]
Participant commonly suffered long term health complications from sepsis	“It was more PTSD than depression. I just had a lot of triggers that would send me into feeling like I was on a hospital bed and send me right back there.” [Participant 18] “People kept saying, ‘Well, you look good. You look healthy.’ And I’m like, okay, well, that’s nice. But I have chronic body pain, and I can’t organize my own thoughts.” [Participant 14]
Reporting / Systems Learning
Participant actively sought closure from their experience	“The only thing that always bothers me is, is after writing that letter to the hospital, I kind of expected the midwife to at least write a letter back or somehow communicate to me that she apologized for being dismissive.” [Participant 19] “I wanted to be believed and I wanted my experience to be acknowledged and I wanted to not feel like it was not going to happen to the next person. And that never happened. I think for reasons that doctors are so afraid of malpractice and they don’t want to talk to patients about these things. And I think that’s a real problem for me in terms of healing, and I think it’s also a problem for the system that we don’t learn from things to get better.” [Focus Group 3 Participant]
Disjointed and poor communication contributed to adverse outcomes	[On what lead to the death of his wife] “…To me, it’s communication. It’s a woman with a concern and a point of view that no one gave enough recognition to. [She] said ‘I don’t feel well’ and that was never enough to move their needle to say, ‘well, let’s see what’s wrong; let’s start, you know, top to bottom. Give you an exam, let’s calm everyone’s fears.’ It’s just ‘you had a baby, you’re going to be fine. It’s okay.’ And, the dismissive nature to her questions and concerns, to me, is the roadblock that led to this outcome.” [Support Person 1] “Everyone was so busy, no one was communicating well with each other and it just would’ve taken that one person just to take like a minute and think this doesn’t add up, right? And then no one really did that until the signs were so blaring.” [Participant 11]
Respectful, Equitable, and Supportive Care
Participant reported bias or made significant efforts to minimize treatment bias	“I wanted my husband to go home and get my business card that has my picture, so they could see me with my hair fixed. I want my nurses to know I am a real person. I’m here with a ponytail on and a gown. I want them to realize and work towards saving me if something happened.” [Focus Group 2 Participant] “On a normal day I feel like I face challenges just living as a Hispanic woman in a predominantly white area but in this case, I didn’t have any doctors who look like me or nurses who look like me.” [Participant 9]
Participant felt that UMWS would have helped them advocate for themselves	“It would have been helpful to have this list to give me the language. I had these symptoms and knew something was wrong. We felt like we should have sort of [participant and her husband] advocated for ourselves but didn’t know what we were supposed to be advocating for.” [Participant 11] “I wish someone would’ve explained the signs and how to advocate for themselves. Like if you call and they tell you don’t come, still go.” [Participant 20]

Readiness themes focused on lack of education given to participants on the warning signs during prenatal care and at postpartum discharge, the symptoms patients experienced, and symptoms that aligned with the UMWS, additional symptoms not listed on the UMWS, and their advocacy for the use of the UMWS as an education tool. Participants reported that they did not receive prenatal education about warning signs during prenatal care or at the time of discharge after delivery. When participants were asked to list the symptoms they experienced during sepsis, all participants listed one or more of the warning signs included on the UMWS tool and additional symptoms not listed on the UMWS tool. When shown the UMWS tool, participants recalled additional symptoms. Among the UMWS symptoms, participants consistently reported overwhelming tiredness 16 (80 %), pain 14 (70 %), chest pain/fast beating heart 12 (60 %), fever 11 (55 %) dizziness/fainting 8 (40 %), as symptoms experienced during the development of sepsis. Beyond the signs listed on the UMWS, participants described varied additional symptoms such as shaking chills, signs of severe dehydration, mental status changes, and no appetite. Participants reported that the UMWS would be helpful in teaching patients so that they would know what warning signs to watch for and when to seek medical attention. They also emphasized the value of patients using it to self-advocate for a full evaluation when experiencing any of the UMWS. Participants talked about how the UMWS could support patients when they feel they are not being heard or believed.

Recognition themes focused on participant symptoms experienced when developing sepsis and the barriers that delayed recognition of sepsis. Most participants reported severe pain as one of the presenting symptoms. With presenting symptoms, participants’ reported concerns were met with the dismissal that their symptoms were “normal” for pregnancy or postpartum. While more than half of participants reported having a fever, seven participants (35 %) specifically reported that they did not have a fever at the time of other symptoms. Those without a fever reported that they felt their concerns were not taken seriously because they did not have a fever of 100.4° F, despite having other serious symptoms such as severe pain, tiredness, vomiting, and fast heart rate. More than half of the participants reported making at least two attempts to seek care (e.g., phone calls to the doctor’s office or visit to the emergency department) before returning to the hospital and being admitted. Participants’ early reports of their symptoms and attempts to seek care were most often dismissed with reassurance that their symptoms were normal for recently giving birth. This resulted in delays in care that lasted for several days.

For Response, themes emerged that the participants viewed medical staff’s explanation of participants’ condition and the timeliness of their communication as problematic, and participants had mixed views of the quality of care they received. Many participants were not informed of their sepsis diagnosis and only learned about their sepsis diagnosis towards the end of their medical event or after they requested medical records and found it written in the chart. Most participants and their support persons recalled receiving unclear information about their diagnosis or asking repeatedly for updates during hospitalization. The participants had mixed views of the quality of care that they received; half felt that they received high quality of care and the other half felt that they received low quality of care. Hallmarks for high quality of care included medical staff who were particularly helpful, communicative, and appeared to be advocating for the patient. Perceptions of low quality of care from medical staff included behaviors of not listening to the patient, not providing timely communication, and not addressing the patients’ symptoms.

Maternal survivor participants reported post-sepsis syndrome (i.e., long-term effects of sepsis, including psychological sequelae, cognitive dysfunction, and fatigue) and other sequelae. However, they reported not receiving screening and support for managing and treating their long-term illness and were unsure about which provider should coordinate follow-up care (such as OB-GYN or primary care provider). They reported being treated by multiple specialists without a primary provider coordinating care, screening, and referrals. Participants experienced significant trauma from their critical illness that negatively impacted their mental health.

In Reporting/Systems Learning, participants actively sought closure from the experience by writing letters to the hospital, requesting their medical records, completing patient surveys with narratives of the events, and seeking counseling. The responses from obstetric providers varied during the recovery period. Some participants were offered an apology. Responses to the apology were mixed: one patient did not experience closure from an apology from a patient advocate coordinator uninvolved in the case and another said it felt good to have it directly addressed by her physician. One participant went to joint counseling with her obstetrician so they could both heal. Very few reported receiving any response from the hospital or providers despite completing surveys or writing letters about the experience. They emphasized that they would have welcomed a dialogue with the hospital and/or the clinical team. Some participants also reached out to the physician they felt made a difference in their outcome with a “thank you for saving my life” note on annual milestones such as the child’s birthday.

Respectful, Equitable, and Supportive Care themes concentrated on participants needing to advocate for themselves. All participants knew something was wrong but had difficulty advocating for themselves to have a thorough evaluation. If it had been available at the time of illness, participants felt that having the UMWS tool would have helped in providing the language to advocate for themselves and not accept that the symptoms they experienced were normal for pregnancy or postpartum. The endorsement of the warning signs by the Centers for Disease Control and Prevention (CDC) and AIM program would have provided credibility of their symptoms to the hospital staff. If they were dismissed, they could produce the warning signs and advocate for a full evaluation. The participants who identified as people of color reported experiencing bias. Some participants of color described taking measures to minimize treatment bias during their presentation with critical illness.

Comment

Principal findings

Missed opportunities emerged from this study describing participants’ symptoms and clinical care. The major findings are the following: 1) participants did not recall warning signs education and reported that having education about warning signs would have helped them get care sooner and advocate for themselves; 2) many of the presenting symptoms participants experienced were atypical signs of sepsis, such as severe pain, overwhelming tiredness, and lack of fever; 3) many participants’ reported symptoms that were dismissed as “normal” for pregnancy or postpartum and were provided reassurance rather than a further evaluation, subsequently leading to delays in diagnosis and treatment; and 4) the majority of the participants experienced long-term sequelae and had difficulty receiving referrals for treatment due to lack of provider awareness, screening, and follow-up after hospital discharge. Standardization of assessing patient concerns, providing patient and provider education, and follow-up to allow for assessment and referrals for post-sepsis syndrome are critically needed.

Results in the context of what is known

In these participants’ experiences, warning signs education was not presented, inaccessible, or not memorable enough to recall. Multiple maternal mortality review committee reports have highlighted the need to provide patient education on warning signs [2–4]. Currently, discharge education on warning signs is not standardized or retained [12–14]. This study provided novel findings for patients and providers to recognize the nuanced signs of maternal sepsis so patients can receive prompt treatment. Some strategies to explore include providing this education during prenatal care, induction of labor, or while awaiting scheduled cesarean delivery to avoid competition with neonatal educational priorities after delivery. Yet, discharge education papers may still be lost or discarded. A novel approach to remedy this problem is the use of a QR code for warning signs education where nurses help patients add a tile with UMWS on their phone [10]. Further research on effective standardization, patient retention, and patient-centered education of warning signs are critically needed.

Participants also experienced dismissal of their symptoms as “normal for pregnancy or postpartum.” They reported not being asked clarifying questions about the severity, or given further evaluation, which ultimately led to delays in diagnosis and treatment. Nonspecific symptoms such as tiredness or pain are common during pregnancy or postpartum. However, asking clarifying questions would have revealed that the symptoms were severe enough to limit activities of daily living. The Stop, Look, and Listen Campaign for maternal safety recommends the following: 1) Stop everything to address patient concerns that something is wrong; 2) perform an examinations to rule out evolving problems; and 3) listen to the patient’s concerns and do not assume the concerns are typical of pregnant and postpartum patients [15].

Post-sepsis syndrome and other long-term sequelae commonly affected the participants interviewed, but they did not receive post-sepsis education, assessments, or coordination of care for referrals. The difficulty in accessing follow-up and resources for post-sepsis care is similar to other studies in the general population that highlight challenges for assessment and referral for physical, psychological, and cognitive impairments [16,17]. The Surviving Sepsis Campaign Guidelines issued best practice statements recommending that patients receive education about common impairments after sepsis and follow-up with clinicians able to support and manage post-sepsis sequalae [18]. In non-pregnant patients, recommended post-sepsis physical function and mental health screening are associated with reduced 90-day readmission and mortality, however are variably completed in practice [19,20]. Recent obstetric consensus statements for maternal sepsis recommend providing patient education, assessment, and support for physical, psychological, and cognitive impairments [21–22]. Standardized patient education coupled with an established follow-up plan prior to discharge may be used as a strategy to address this gap.

Research implications

This hypothesis-generating study provides the basis to create studies to test methods to improve education for providers and patients to determine which methods are most effective to prevent the adverse outcomes these patients experienced.

Strengths and limitations

This study provides novel insight into patient symptoms and barriers to care, but there are several limitations. First, the findings are solely from the patient’s and their support person’s point of view, and we do not have their medical charts for the medical team perspective. Second, some of the cases happened several years prior and are subject to reduced recall of events. However, we invited the participant to bring a support person to the interview and their stories were concordant and themes were consistent over time for this rare but catastrophic event. Traumatic events can improve memory performance due to hypervigilance and enhanced sensory processing in times of acute stress [23]. Importantly, we were able to achieve theme saturation and present 20 unique experiences through the eyes of patients and support persons.

Conclusions

Given the public health importance of maternal sepsis as a leading cause of maternal mortality, identifying barriers to care for maternal sepsis is crucial to design strategies to improve recognition, patient and provider education, and addressing long-term sequelae. This study reports novel findings of the symptoms of pregnant patients with sepsis, gaps in patient education of warning signs, and gaps in provider knowledge and delivery of post-sepsis follow-up. Following existing recommendations for providing patient education on warning signs, educating providers about nuances of how patients may present with maternal sepsis and long-term sequelae offers an opportunity to potentially improve outcomes in patients with maternal sepsis.

At a Glance.

A. Why was this study conducted?

To determine the quality improvement opportunities for maternal sepsis care based on the perspectives of patients and support persons with lived experience.

B. What are the key findings?:

In this qualitative study of 20 patient experiences with maternal sepsis, four main themes identified barriers to quality care: (1) lack of patient awareness about pregnancy-related warning signs; (2) lack of provider awareness about atypical symptoms of sepsis; (3) delays in diagnosis resulting from the dismissal of patient concerns; (4) lack of screening and referrals for patients experiencing long-term sequelae.

C. What does this study add to what is already known?

Patient and clinician education, emphasis on active listening, and comprehensive sepsis care are needed to improve maternal sepsis care.