In the Giving Voice to Mothers study, service users of maternity care in the US described mistreatment across categories that closely align with the WHO (Bohren) typology that was derived from global evidence on the phenomena. In this study of care in a high resource country, physical abuse was uncommon, but verbal abuse and failure to respond to requests for help were the most common types of reported mistreatment; rights to information and autonomy were apparently disregarded; and difference of opinion with care providers had a strong association with reported mistreatment. While the overall rates of mistreatment are lower in our US sample than recent studies report in low resource settings [5], they are still unacceptably high for a high resource country given a cultural emphasis on autonomy, gender equity, human rights, better working conditions for providers, and resources for training.

Protective factors, in terms of mistreatment were: being White, having a vaginal birth, giving birth at home or in a freestanding birth center, having a midwife as the primary prenatal provider, and having a baby after 30 years of age. Being multiparous was also protective, which may suggest that prior experience helps patients avoid disrespectful treatment, or conversely that disrespectful treatment is normalized by prior experiences among certain populations. Importantly, more than half of our sample planned community births, and they experienced very low rates of mistreatment when compared to those who gave birth in hospital. Since less than 2% of all childbearing women in the US give birth in community settings [41], the rate of mistreatment (30%) among women in our sample who gave birth in a hospital, is likely a better estimate of the true rate of mistreatment during childbirth among US women.

Patient-led measurement of health equity

In 2017 the National Quality Forum (NQF) convened a multi-stakeholder group of experts to develop a shared agenda to achieve health equity [42]. The team highlighted four priority areas for action: identify and prioritize areas to reduce health disparities, invest in the development and application of person-centered health equity performance measures, incentivize the reduction of health disparities, and implement evidence-based interventions to reduce disparities.

Our Giving Voice to Mothers study has addressed this mandate through the patient-led development and validation of unique items that can be used to measure disrespect, abuse, and discrimination during maternity care. Using these items, we were able to show that some populations experienced significantly higher rates of mistreatment, such as women of color, young women, and those who reported economic, social or health risks. All women who self-identified as Black, Indigenous, Hispanic, or Asian reported higher than average experiences of mistreatment. Regardless of their own race, having a partner who was Black also increased their risk of mistreatment.

The types and recipients of mistreatment identified by participants in the GVtM study are consistent with patient-oriented research evidence from a recent qualitative study [43] in California. McLemore and colleagues [43] explored pregnancy-related healthcare experiences through focus groups of women of color from three urban areas in California. The study included English and Spanish speaking women, age 18 or greater with social and/or medical risk factors for preterm birth. Based on the data collected from 54 women in two focus groups, the authors identified five themes: 1) disrespect during healthcare encounters; 2) stressful interactions with all levels of staff; 3) unmet information needs; 4) inconsistent social support; and 5) care that affected confidence in parenting and newborn care. Focus group participants provided examples of each of the seven types of mistreatment that we measured. Participants discussed sharing of personal information, violation of physical privacy and being “yelled at” by a physician. Half of the participants discussed being pressured or threatened, with the most common type of threat being, “if you do not comply or do this, your baby will die or you will have a bad outcome.” Similarly, coercive language reported by participants in our GVtM study frequently referred to the potential loss of the baby.

Mistreatment, inequity, and access to high quality care

In high resource countries, pregnant people who experience discrimination due to lower socioeconomic status, race/ethnicity, or housing instability, are especially at risk for poor health outcomes [20]. For, example, a European team reviewed published evidence on discrimination against Romani women in maternity care in Europe [21]. Results revealed that many Romani women encounter barriers to accessing maternity care. Even when they were able to access care, they experienced discriminatory mistreatment on the basis of their ethnicity, economic status, place of residence or language. The grey literature revealed some health professionals held underlying negative beliefs about Romani women [21].

Similarly, much has been written about how implicit bias by healthcare provider links to disparities in access to and quality of care [44]. Growing evidence suggests that differential quality of care in North America contributes to racial and ethnic disparities in obstetric and perinatal outcomes [18, 20, 45,46,47] and that access to high quality of care in obstetrics varies widely by jurisdiction and type of provider [48]. In our study Indigenous women were the most likely to report mistreatment among the racial groups, closely followed by African American and Hispanic women. Indigenous men and women in Central America report barriers to accessing healthcare and abusive treatment and neglect of professional ethics from HCPs [49]. Canadian research has documented the distress and racism experienced by Aboriginal women including discrimination, loss of autonomy and dehumanizing interactions with care providers [50].

Vedam et al. [32] found that in British Columbia, women from vulnerable populations (i.e. recent immigrants or refugees, women with a history of incarceration and/or substance use, homelessness or poverty), women with pregnancy complications, those who have birth at hospital (versus home) and women who experienced pressure to have interventions were more likely to score very low on the MOR index, a scale that measures respectful maternity care [32]. Our intersectional analysis underscores that the negative impacts of race and social vulnerability are intertwined and cumulative, that those who are already at risk for the worst outcomes, also experience higher levels of mistreatment. Given that the burden of disparities borne by these populations has shown little improvement in recent decades, understanding the presence of mistreatment in childbirth may aid our efforts to comprehend underlying causes, and inform our efforts to eliminate them.

The context of care

We also elicited differential treatment when women’s choices and opinions about “the right care” for themselves or their baby did not align with providers. Those who were transferred to hospital from the community, women who reported being pressured into interventions, and those who had a difference of opinion with their health care provider reported higher rates of mistreatment. Differential rates of mistreatment may be associated with differences by race in level of patient autonomy and/or pressure to accept interventions from providers, which in itself constitutes mistreatment. The relationships between differences of opinion, interventions, and mistreatment require further study to elucidate the temporal nature of these associations. In qualitative study, researchers in New England interviewed 50 white women and 32 women of color the day after they gave birth at a tertiary care facility [51]. Women of color reported more pressure to accept epidural anesthesia and were also more likely to experience failure in their pain medication and report that providers ignored their pain and anxiety.

Higher rates of mistreatment among those who have unplanned cesarean births warrants a closer examination, given country-level disparities in overuse and underuse of obstetric interventions [1], as well as the confounding reality that proportionately more women of colour in our sample, as in the general US population, had cesareans. Multiple authors have examined racial differences in both primary cesarean and VBAC rates and found women of colour have an increased risk of cesarean delivery after adjusting for sociodemographic and clinical risk factors [52,53,54,55]. Additionally, women with private health insurance have a lower predicted probability of having a cesarean section for clinical indications than do women with public health insurance [56].

The significant number of respondents that reported “being ignored” or that “providers failed to respond to their requests for help” is a disturbing finding in a high resource setting, especially in light of recent data that links delayed response to clinical signs to maternal mortality. The California Department of Public Health (CDPH), the California Maternal Quality Care Collaborative (CMQCC) and the Public Health Institute (PHI) recently released data from a statewide examination of maternal deaths from 2002 to 2007 [57]. The report identified that healthcare provider factors were the most common type of contributor to maternal deaths, averaging 2.5 factors per case and present among 269 cases or 81% of maternal deaths in that time period. The most common provider factor was delayed response to clinical warning signs, followed by ineffective care [57].

Finally, place of birth appears to have a modulating effect on experiences of mistreatment. Women from all race and ethnic backgrounds who gave birth at home or in birth centers reported far fewer examples of all seven types of disrespect and abuse. This is especially poignant in light of the finding that women who needed to transfer to hospital from a planned community birth, ostensibly to access a safe environment to respond to emerging complications, experienced very high rates of mistreatment. Whether these differences are a result of the change in locus of control and loss of cultural safety that all people feel in their own environments [58], or the effects of structural racism, societal norms, and implicit bias that exist in institutional cultures, remains to be explored.

Implications

Bohren and colleagues argue that instances of mistreatment constitute violations of people’s human rights. [13] Several respondents in our study provided descriptions about how mistreatment violated these basic principles. Amnesty International identified the inappropriate, disrespectful, and discriminatory treatment of pregnant and childbearing people in the United States as constituting a human rights violation and documented incidents of women, particularly women of colour, being abandoned, ignored, threatened, coerced, shouted at, and otherwise mistreated [59]. Violations of human rights in childbirth tend to be more severe in countries where women have limited options in terms of where, how and with whom they can give birth. Authors of the WHO Research Group [60] argue that, to prevent mistreatment, health care providers need to first consider how they can meet women’s socio-cultural, emotional and psychological needs.

A recent publication on addressing racial disparities in the management of hypertension discussed how performance measures can be used to incentivize self-monitoring programs, and the development of pragmatic, effective interventions to improve health equity [61]. The authors describe a multi-strategy approach that takes into account the complex interactions between social determinants of health, societal drivers of inequity, payment models, and cultural competency education for health professionals. They refer to the five domains of health equity measurement described in the NQF report: first, building collaborations to address factors that maintain racial and ethnic disparities; second, creating a culture of equity and individualized care and routine training around issues of structural racism and intersectionality of multiple drivers of disadvantage; third, moving to the development of multidisciplinary teams, and fourth, addressing issues of access to high quality care across communities and settings for care. The final domain focusses on the equitable application of evidence-based interventions that are responsive to patient reported outcomes and priorities [61].

With respect to mistreatment, dignity, and freedom from human rights abuses in maternity care, this last priority is dependent on the health systems ability to monitor and describe patient experience with reliable indicators. Our patient-driven performance measures can target the key components of mistreatment to address by jurisdiction, and identify settings where quality improvement related to respectful maternity care is most needed, as well service users most at risk for differential treatment. Abuya and colleagues [19] have suggested several intervention and implementation activities to eliminate mistreatment of women in low resource countries. Many of these strategies are also relevant in the US context, such as training for care providers in promoting respectful care including values clarification and attitude transformation (VCAT), training on VCAT based on providers’ and clients’ rights and obligations, and revision of professional ethics and practices. The authors also recommend strengthening facility quality improvement systems for monitoring, reporting, addressing, and resolving disrespect and abuse cases. Mentorship and on-the-job role-modeling by identified champions within the facility as part of routine continuous professional education has been shown to shift team culture. At the same time civic education about patient rights and avenues for redress may be needed to ensure accountability even in high resource countries.