The Gap Between Records and Lived Experience

The informant interview, within the context of maternal mortality review, is a structured, trauma-informed conversation with family members, partners, or close friends, conducted after a maternal death. These interviews are designed to supplement and contextualize quantitative data by capturing experiences that only those closest to the decedent can provide. The Informant Interview Guide for Maternal Mortality Review Committees defines the goal of an informant interview as gaining insight into the death and the broader context of the decedent’s life, with a focus on identifying opportunities to improve healthcare quality and systems of care.1

Maternal Mortality Review Committees (MMRCs) are multidisciplinary bodies, typically housed within state health departments, that conduct comprehensive reviews of pregnancy-associated deaths to identify contributing factors and develop recommendations for prevention. Committee reviews are informed by both quantitative and qualitative information abstracted from existing case materials, including medical records, vital records, mental health records, social service records, emergency medical services reports, and law enforcement records. Together, these sources provide critical clinical, demographic, and investigative information that trained abstractors synthesize into a comprehensive case narrative. Committee members use this information to determine pregnancy-relatedness, cause of death, and preventability to develop recommendations at the patient, provider, facility, system, and community levels.

Quantitative data are the backbone of this process and are foundational to the maternal mortality surveillance and case review. These sources allow MMRCs to identify trends over time, compare rates across populations, and understand broad, population-level patterns. Although medical records originate as narrative data, they are often coded into quantitative variables, providing limited insight into the lived experiences of pregnancy and the postpartum period. Furthermore, quantitative data have inherent limitations, as they reflect what was documented, not necessarily what occurred or how care was experienced. Clinical documentation is also shaped by providers’ perspectives and the priorities of medical recordkeeping, and, as a result, these sources often miss communication breakdowns, unmet needs, barriers to follow-up care, and the broader circumstances of a woman’s health during pregnancy and the postpartum period. Quantitative data also cannot capture the emotional, psychological, or cultural dimensions of care: whether a patient felt safe, heard, or believed; whether a clinician minimized pain or failed to explain a diagnosis; or whether transportation, insurance lapses, childcare, or intimate partner violence made follow-up care difficult to reach.

This gap is especially consequential in the postpartum period. According to the Centers for Disease Control and Prevention (CDC) data from Maternal Mortality Review Committees, 67.9% of pregnancy-related deaths in 2022 occurred in the postpartum period, from the day after delivery through 365 days postpartum.2 Documentation typically ends at discharge, leaving little record of what happened in the following days, weeks, and months, a lapse in clinical contact that underscores the value of informant interviews for understanding deaths that occur beyond delivery.

Social determinants of health, including housing instability, transportation, interpersonal violence, stigma, and fragmented systems of care, are similarly underrepresented in clinical documentation. The County Health Rankings model estimates that clinical care accounts for only 16 to 20% of modifiable health outcomes, with the remaining share attributable to health behaviors, social and economic factors, and the physical environment combined.3 Informant interviews offer a unique opportunity to capture this individual-level context, allowing review committees to determine whether non-medical drivers contributed to barriers in access to care, follow-up, or recovery. This constraint is especially pronounced in cases of suicide and overdose, where records alone often make it difficult to determine whether this subset of deaths is pregnancy-related.

In a national Delphi study of pregnancy-related suicide and overdose deaths, only 19.4% of cases were classified as pregnancy-related when reviewers had only base clinical information available. However, that proportion rose to 56.8% once additional contextual information was introduced.4 Informant interviews with next of kin and loved ones help clarify chain-of-events logic by revealing how pregnancy, postpartum experiences, and broader life circumstances interact over time to shape maternal risk. Family interviews can reveal the timing and sequence of pregnancy-related stressors, mental health changes, substance use patterns, and care-seeking behaviors that are often absent from clinical documentation, allowing review committees to move beyond a fragmented account of clinical events toward a more complete understanding of how risk evolved within the context of daily life. Ultimatley, informant interviews can provide a more complete understanding of the mental health trajectories that precede a maternal death. Understanding these trajectories is critical for interpreting suicide and overdose deaths, which frequently involve complex interactions between perinatal mental health conditions, structural barriers to care, and evolving psychosocial stressors.

Why Qualitative Insight is Critical in Black Maternal Health

The urgency of integrating qualitative insight is apparent when considering the lived realities of Black women navigating maternal healthcare systems. Although surveillance systems effectively quantify racial disparities in maternal mortality among Black women, these systems are less equipped to capture lived experiences, health care interactions and structural conditions that help explain why these disparities persists. In 2024, Black women experienced pregnancy-related deaths at approximately three times the rate of White women.5 These disparities remain across income, education, geography, and insurance status, underscoring that their causes are structural and systemic rather than rooted in individual behavior or isolated clinical factors. Black women often navigate pregnancy and childbirth within systems that have not always provided equitable, respectful care. Zapata et al. demonstrate that many Black women recount experiences of medical racism, loss of agency, and emotional trauma during pregnancy and childbirth, including being ignored, lectured, or spoken down to by healthcare professionals.6 These encounters serve a critical role in how women engage with healthcare systems and may influence when and whether they seek care.

Additionally, research on severe maternal morbidity among Black women continues to provide a vivid portrait of the emotional and interpersonal toll of unresponsive care. Canty’s study of Black women who survived life-threatening pregnancy complications describes participants experiencing fear, confusion, inadequate communication, and ongoing trauma, experiences that shaped both their immediate response to care and their long-term well-being.7 Many participants reported not recognizing the seriousness of their own symptoms or feeling unprepared to advocate for themselves when complications arose. These experiences are not limited to a single study population; national data reflect the same patterns more broadly among women of color.

The CDC provides further insight into the scale of these disparities. In its 2023 Vital Signs report, the CDC found that about 40% of Black, Hispanic, and multiracial mothers reported discrimination during maternity care, while about 30% reported mistreatment, such as violations of physical privacy or verbal abuse.8 These reports have direct implications for maternal safety, yet they rarely appear in quantitative sources used to document maternal health experiences and outcomes. As a result, mortality review committees may struggle to identify when bias or discrimination influenced the course of care and lack the ability to assess how those dynamics affected mortality preventability. Informant interviews help address this limitation by providing narrative context surrounding possible experiences of discrimination, mistreatment, and barriers to care that are often absent from traditional case review materials. These narratives can illuminate perceived dismissal of symptoms, delays in diagnosis or treatment, barriers to follow-up care, and challenges in navigating the healthcare system. Together, these perspectives help committees better understand how discrimination and bias may have shaped a woman’s care-seeking experiences, influenced the course of care, or contributed to missed opportunities for intervention, in turn strengthening discussions of contributing factors and prevention recommendations.

Integrating Interviews Into Maternal Mortality Case Review

If quantitative data serve as the backbone of maternal mortality review, qualitative interviews with family members and loved ones serve as its heart. Quantitative measures, counts, rates, and clinical indicators summarize patterns across cases, but they can distance reviewers from the person behind each case. Informant interviews restore that human element by centering lived experience and illuminating the circumstances, relationships, and systems that shaped a mother’s life and death. Numbers can show what happened; narratives help explain how and why it happened, strengthening the committee’s understanding of contributing factors, preventability, and opportunities for prevention.

Historically, MMRCs relied almost exclusively on administrative, medical, and coroner records, with abstractors synthesizing these sources into a case narrative for committee review. Over time, jurisdictions recognized that these records rarely captured a complete picture of the events leading to a woman’s death, prompting many MMRCs to incorporate informant interviews or semi-structured conversations with family members and other close contacts into the case review process. The Informant Interview Guide for Maternal Mortality Review Committees directs how these interview summaries should be developed and crafted into the final case narrative, emphasizing respectful, unbiased language and highlighting information relevant to determinations of pregnancy-relatedness, preventability, contributing factors, and recommendations.1

Kothari et al. found that incorporating family interviews led to a 2.6-fold increase in the number of stressors identified, particularly those related to gaps in medical services and socioeconomic barriers, and a 40% increase in the number of actionable recommendations produced by review committees.9 These findings demonstrate that informant interviews not only enrich case-level understanding but also strengthen the quality of mortality review by identifying preventable factors that may otherwise remain unrecognized. The Mississippi Maternal Mortality Review Committee illustrates this practice directly, identifying informant interviews as a key component of case review and noting their value in providing contextual information beyond the medical record to support identification of contributing factors and prevention strategies.10

Louisiana’s Pregnancy-Associated Mortality Review states that “by serving as a proxy for the decedent’s voice, interviews with loved ones aim to deepen understanding of the case and ‘complete the picture’ by shedding light on the emotional, interpersonal, and structural realities the decedent faced in the time leading to their death—realities that are often missing from clinical records.”11 Because the person at the center of the review cannot speak to her own experience, the people who knew her best become a critical source of context that clinical records do not capture. This information restores a human dimension to the case and addresses gaps that clinical documentation often leaves unresolved. This depth of insight, however, comes with limitations worth examining.

Like all data sources used in maternal mortality review, informant interviews have limitations that should be considered within the broader context of multidisciplinary case review. Family members recount their experiences while navigating grief, trauma, and loss, and their recollections may be shaped by the passage of time, emotional stress, or the information available to them at the time of the events. Likewise, family members may not have direct knowledge of every clinical decision, healthcare encounter, or aspect of the decedent’s medical history. Participation in informant interviews is voluntary; therefore, not every eligible family chooses or is able to participate. In addition, MMRC’s capacity to conduct interviews varies across jurisdictions due to differences in staffing, funding, infrastructure, and the maturity of interview programs. As a result, the interviews available for committee review may not represent the full spectrum of pregnancy-associated deaths within a jurisdiction. Additionally, interview accounts may differ from information documented in medical records or other case materials. However, these differences should not be viewed as contradictions requiring reconciliation or as evidence that one source is more credible than another. Rather, they represent complementary sources of information that capture different dimensions of maternal death. Medical records document clinical findings, diagnoses, treatments, and healthcare encounters. In contrast, informant interviews provide insight into how symptoms, care, communication, and healthcare interactions were experienced and understood by families, while also identifying social, behavioral, structural, and contextual factors that may have contributed to the death. Together, these perspectives often capture communication gaps, unmet needs, system-level challenges, or opportunities for prevention that might otherwise remain unseen. As such, differences between informant interviews and other data sources should be interpreted as opportunities for deeper inquiry rather than inconsistencies requiring resolution.

Conclusion

Every woman whose death is reviewed by an MMRC leaves behind family, friends, and community members who knew her, loved her, and can offer perspectives that complement the clinical information contained within the medical record and other available sources. Informant interviews create space for forms of knowledge often unavailable in traditional case review materials, helping to address information gaps and providing a more complete understanding of the lived experiences, social context, and circumstances surrounding a maternal death.

As more MMRCs adopt informant interviews, these narratives should be viewed as an integral component of comprehensive maternal mortality review. When considered alongside medical records and other case information, these interviews strengthen determinations of pregnancy-relatedness, contributing factors, preventability, and opportunities for prevention by providing critical context that might otherwise remain unseen. Together, these complementary sources of information support a more complete understanding of pregnancy-associated deaths and strengthen the committee’s ability to identify meaningful opportunities for systems improvement.

Ultimately, maternal mortality review is not simply about understanding how a woman died. It is also about understanding how she lived, how she experienced care, and what can be learned to prevent future deaths. When families are given the opportunity to share their loved one’s story, maternal mortality review becomes more complete, more person-centered, and better equipped to honor the women who were lost while helping protect the mothers who come after them.

Funding/Support

This work is funded in part by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (U54HD113159).