Black and Asian women’s experiences of stillbirth or neonatal death: The MBRRACE-UK Perinatal confidential Enquiry

MBRRACE perinatal confidential enquires continue to raise concerning disparities in neonatal health outcomes based on ethnicity. The most recent report by Draper et al. (2023) reviews the stark contrasts in stillbirth and neonatal mortality rates, with Black infants experiencing a staggering 124% increased risk of stillbirth and a 43% heightened risk of neonatal mortality compared to their white counterparts. Similarly, Asian infants face a 57% increased risk of stillbirth and a 59% elevated risk of neonatal mortality. These findings underscore the urgent need to address ethnic inequalities in neonatal health, particularly in England and Wales.  

Opondo et al’s (2020) study emphasizes the presence of ethnic inequalities in neonatal health outcomes in the UK, highlighting that UK-born infants of non-UK-born minority ethnic group mothers exhibit better birth outcomes, while certain subgroups face higher neonatal death risks. 

These reports attempt to review the data with a lens on ethnic disparities experienced by Black and Asian perinatal outcomes and, where possible, identify key areas of concerns. 

Some Key Points from the review: 

Disparities in Care: 

• Black and Asian mothers receive fewer instances of quality care compared to their white counterparts.
• Recognition of personal challenges, particularly among white women, was highlighted. This can be particularly dangerous for the invisibly Ethnic Minorities that fall under “white”, such as Roma, Traveller or Eastern European communities.
• Language barriers pose a significant hurdle, with inadequate interpretation services, and a higher prevalence of language barriers identified in Asian women.

Gaps in Gestational Diabetes Screening: 

• Alarmingly, 1 in 5 Asian women and 1 in 3 Black women are not offered blood tests for gestational diabetes.
• This gap in screening exacerbates the risks associated with adverse neonatal outcomes.

Vitamin D Deficiency: 

• There is a concerning lack of initiation of Vitamin D supplementation for Black women.
• Only 1 in 10 Asian women commence Vitamin D supplementation, highlighting a substantial gap in prenatal care.

 

Recommendations: 

Enhance Data Collection Practices: 

Recommendation: Develop national guidance and training for all health professionals to ensure accurate recording of women’s and their partner’s self-reported ethnicity, nationality, and citizenship status, fostering personalised care. 

Supporting Research: Zhang et al. (2022) stress the importance of accurate data collection, including ethnicity and nationality, to comprehend and act on ethnic inequities in paediatric healthcare. Nazroo (2022) further emphasises the role of racism in creating health disparities, underscoring the need for accurate recording to address the impact of racism on health outcomes. 

Address Language Needs: 

Recommendation: Provide maternity staff with guidance and training to accurately identify and record language needs, offering appropriate support and care, including guidance on using healthcare professionals as interpreters when necessary. 

Supporting Research: Nazroo (2022) highlights the impact of racism on healthcare disparities, emphasising the need for healthcare professionals to address language needs. Pabayo et al. (2019) stress the importance of national support to overcome barriers to equitable provision of interpretation services. 

Tackle Social Risk Factors: 

Recommendation: Develop a UK-Wide specification for identifying and recording social risk factors throughout the perinatal care pathway to offer enhanced support and referral. 

Supporting Research: Taylor et al. (2019) and Moltrecht et al. (2022) emphasise the need for a systematic approach to identifying and addressing social risk factors for comprehensive support during the perinatal period. 

Deliver Personalised Care: 

Recommendation: Ensure maternity services deliver personalised care, addressing individual-specific barriers to accessing specific aspects of care for each individual. 

Supporting Research: Knight et al. (2009), Mheta & Mashamba-Thompson (2017), and Carter et al. (2022) highlight the importance of tailored maternity services and personalised care to address individual-specific needs. 

Empower Through User Guides: 

Recommendation: Further develop and improve user guides for perinatal services to empower women and families to make informed decisions about their care. 

Supporting Research: Powell et al. (2020) emphasise the need for service provision adapted to meet women’s psychological needs, supporting the importance of user guides to empower women during the perinatal period. 

Culturally and Religiously Sensitive Care: 

Recommendation: Develop training and resources for all maternity and neonatal staff to provide culturally and religiously sensitive care for all mothers and babies. 

Supporting Research: Turner et al. (2013), Hall et al. (2015), and Gale et al. (2012) highlight the importance of training to ensure culturally sensitive care, recognising cultural and religious sensitivities. 

Include Voices in Reviews: 

Recommendation: Further develop existing Perinatal Mortality Review Tool (PMRT) guidance to ensure active inclusion of women’s and parents’ voices in local reviews. 

Supporting Research: Bakhbakhi et al. (2017) emphasise the importance of actively engaging parents in the review of stillbirth/perinatal death to support families who have experienced perinatal loss. 

Ensure Adequate Resources: 

Recommendation: Ensure that all relevant staff in Trusts and Health Boards have adequately resourced time in their work plans and contracted hours to participate in local PMRT multidisciplinary review panels. 

Supporting Research: The need for adequate resourcing is emphasised to ensure the appropriate constitution and conduct of safety-critical meetings (Bakhbakhi et al., 2017). 

Limitations of the Study: 

The study acknowledges several limitations that impact the comprehensive understanding of disparities in perinatal care: 

Undocumented Differences in Care: 

The confidential enquiry is constrained in its ability to identify important differences in care that may have occurred but were not documented or lacked sufficient detail in the available clinical notes. This limitation extends to potential biases in staff attitudes or behaviours that could influence non-verbal communication. 

Absence of Direct Data from Mothers and Families: 

The study is limited by its reliance on clinical notes and lacks direct data collection from mothers and families about their experiences. Important nuances related to individual interactions and personal experiences may not be fully captured through this indirect approach. 

Lack of Access to Organisational Information: 

Confidential enquiries do not have access to specific organisational details such as structure, practice, and culture. Consequently, the study is limited in its ability to identify examples of structural or systemic racism within healthcare organisations. 

Challenges in Identifying Circumstances Leading to Events: 

The study highlights the difficulty in identifying circumstances leading to events, making it challenging to draw comprehensive conclusions. This limitation is particularly relevant when attempting to understand issues around accessibility, engagement, and individual interactions with women during their care. 

Limited Scope in Determining Adherence to Standards: 

The study’s focus on determining adherence to standards and guidance is constrained by the availability of adequate information. Issues related to accessibility, engagement, and individual interactions may not be fully discernible from clinical notes, letters, and reports alone. 

Inability to Uncover Systemic Racism: 

The study acknowledges its incapacity to consistently identify instances of structural or systemic racism. This limitation hinders a thorough examination of the broader organisational and systemic factors contributing to disparities in perinatal care. 

Nuanced Findings Dependent on Available Information: 

The report is explicitly limited to issues where sufficient information has been provided. The ability to derive nuanced findings is contingent on the availability and adequacy of information in clinical notes and related documentation. 

My thoughts: 

Taking off my professional hat for a moment, I’ve got a plenty of questions bouncing around all that has been highlighted above– not claiming to have all the answers, though. 

Initially, as I joined the panel and delved into the documentation, my expectation was to pinpoint overt issues that could effectively address the outcomes we’ve been examining in this blog. Unfortunately, that wasn’t the case; the limitations became quite evident. It is apparent that uncovering covert behavioural nuances requires more than just a perusal of documents. 

As much as I dislike resorting to clichés, the reality is that additional research is necessary in this area. However, this doesn’t translate to sitting back and waiting for a revelation. It necessitates integrating cultural safety into all aspects of our work, approaching those scary conversations with sensitivity. We need to scrutinize the accessibility of systems, promptly escalating concerns or be involved in the solution. Be mindful of our behaviours, ensuring alignment with our values, and understanding the factors impacting our capacity to deliver optimal practices. 

Quick check-ins with yourself: Have you taken a breather recently? Short-staffed? Feeling fatigued? Human factors inevitably take a toll and can influence the quality of care we provide. Through a commitment to self-care, mutual support, and addressing barriers to care, we can actively instigate the transformative changes we aspire to achieve.  

For those active in this area: Are you genuinely engaging in co-production? How well-versed are you in this domain? Where do you identify gaps in your knowledge, and what steps would you take to enhance them? 

As I mentioned, plenty of questions, but each of us can begin addressing them individually. 

References 

Bakhbakhi, D., Siassakos, D., Burden, C., Jones, F., Yoward, F., Redshaw, M., … & Storey, C. (2017). Learning from deaths: parents’ active role and engagement in the review of their stillbirth/perinatal death (the parents 1 study). BMC Pregnancy and Childbirth, 17(1). https://doi.org/10.1186/s12884-017-1509-z  

Carter, J., Anumba, D., Brigante, L., Burden, C., Gillespie, S., Harlev-Lam, B., … & Sandall, J. (2022). The tommy’s clinical decision tool, a device for reducing the clinical impact of placental dysfunction and preterm birth: protocol for a mixed-methods early implementation evaluation study. BMC Pregnancy and Childbirth, 22(1). https://doi.org/10.1186/s12884-022-04867-w 

Draper ES, Gallimore ID, Kurinczuk JJ, Kenyon SL (Eds), on behalf of the MBRRACE-UK Collaboration. MBRRACE-UK Perinatal Confidential Enquiry, A comparison of the care of Asian and White women who have experienced a stillbirth or neonatal death: State of the Nation Report. Leicester: The Infant Mortality and Morbidity Studies, Department of Population Health Sciences, University of Leicester. 2023. 

Gale, C., Santhakumaran, S., Nagarajan, S., Statnikov, Y., & Modi, N. (2012). Impact of managed clinical networks on nhs specialist neonatal services in england: population based study. BMJ, 344(apr03 1), e2105-e2105. https://doi.org/10.1136/bmj.e2105 

Hall, S., Ryan, D. J., Beatty, J. W., & Grubbs, L. (2015). Recommendations for peer-to-peer support for nicu parents. Journal of Perinatology, 35(S1), S9-S13. https://doi.org/10.1038/jp.2015.143 

Knight, M., Kurinczuk, J., Spark, P., & Brocklehurst, P. (2009). Inequalities in maternal health: national cohort study of ethnic variation in severe maternal morbidities. BMJ, 338(mar03 2), b542-b542. https://doi.org/10.1136/bmj.b542 

Mheta, D. and Mashamba-Thompson, T. P. (2017). Barriers and facilitators of access to maternal services for women with disabilities: scoping review protocol. Systematic Reviews, 6(1). https://doi.org/10.1186/s13643-017-0494-7 

Moltrecht, B., Cassan, S. d., Rapa, E., Hanna, J. R., Law, C., & Dalton, L. (2022). Challenges and opportunities for perinatal health services in the covid-19 pandemic: a qualitative study with perinatal healthcare professionals. BMC Health Services Research, 22(1). https://doi.org/10.1186/s12913-022-08427-y 

Nazroo, J. (2022). Tackling racism: moving beyond rhetoric to turn theory into practice. BMJ, o1597. https://doi.org/10.1136/bmj.o1597 

Opondo, C., Jayaweera, H., Hollowell, J., Kurinczuk, J. J., & Quigley, M. A. (2020). Variations in neonatal mortality, infant mortality, preterm birth and birth weight in england and wales according to ethnicity and maternal country or region of birth: an analysis of linked national data from 2006 to 2012. Journal of Epidemiology and Community Health, 74(4), 336-345. https://doi.org/10.1136/jech-2019-213093 

Pabayo, R., Cook, D. M., Harling, G., Gunawan, A., & Rosenquist, N. A. (2019). State-level income inequality and mortality among infants born in the united states 2007–2010: a cohort study. BMC Public Health, 19(1). https://doi.org/10.1186/s12889-019-7651-y 

Powell, C., Bedi, S., Nath, S., Potts, L., Trevillion, K., & Howard, L. M. (2020). Mothers’ experiences of acute perinatal mental health services in england and wales: a qualitative analysis. Journal of Reproductive and Infant Psychology, 40(2), 155-167. https://doi.org/10.1080/02646838.2020.1814225 

Taylor, B. L., Billings, J., Morant, N., & Bick, D. (2019). Experiences of how services supporting women with perinatal mental health difficulties work with their families: a qualitative study in england. BMJ Open, 9(7), e030208. https://doi.org/10.1136/bmjopen-2019-030208 

Turner, C., Carrara, V. I., Thein, N. A. M., Win, N. C. M. M., Turner, P., Bancone, G., … & Nosten, F. (2013). Neonatal intensive care in a karen refugee camp: a 4 year descriptive study. PLoS ONE, 8(8), e72721. https://doi.org/10.1371/journal.pone.0072721 

Zhang, C. X., Quigley, M., Bankhead, C., Bentley, T., Otasowie, C., & Carson, C. (2022). Ethnic differences and inequities in paediatric healthcare utilisation in the uk: a scoping review. Archives of Disease in Childhood, 108(7), 518-524. https://doi.org/10.1136/archdischild-2022-324577 

December 2023 

Benash Nazmeen,  

Associate Professor in Midwifery, Bradford University