Blame. That continues to be the theme of families of color experiences in healthcare today.
In King County, Washington, we see unacceptable disparities in preventable infant deaths that are often classified as Sudden Unexplained Infant Deaths (SUID) / Sudden Infant Death Syndrome (SIDS).
We know that historic and present-day institutional racism, and the bias it has created, accounts for disparities in all aspects of society. Studies have shown that the health and wellbeing of people of color is negatively impacted by all forms of racism. Maternal mortality studies highlight the disparities that occur every day. It’s critical that these lessons are incorporated into perinatal care practices to protect pregnant people and babies.
The Flipping the Script Project focuses on both sharing the negative impacts of racism in perinatal care from the perspective of the lived experiences of the pregnant individual and demanding large health systems to take action to promote anti-racist practices. Rather than rewrite existing provider scripts or educational materials to inform patients about safe sleep for newborns and infants, the Flipping the Script Project is unique in highlighting the disparities in healthcare and elevating the voices of families impacted by racism in perinatal care. This project does not negate the importance of safe sleep information. The Back to Sleep campaign of the 90s has saved the lives of hundreds of thousands of babies. While the rates of sleep-related infant deaths have gone down considerably for other families, the rates of deaths among babies of color have not improved, and thus the lives of families of color have also not improved. Our families most impacted by racism are being left out of the conversation, are losing their babies at an alarming rate, and need a healthcare system committed to combating racism, bias, and oppressive practices.
What we know is every parent wants to be close to their babies. They want their babies to sleep, and they want to sleep. So, how are providers supporting families holistically? How do providers build trust with communities who face bias in healthcare and in their everyday lives? How do these providers work to better understand family dynamics, traditions, and barriers? These are the questions the Flipping the Script Project wants to answer.
We are five community-based perinatal care provider organizations led and operated by people of color; we are experts in partnering with families in our communities, and we are experts in maternal health and perinatal care within communities at large. As members of, and providers in the communities we serve, we led the charge to give our families a voice by conducting listening sessions in 2023. We continue to hear and experience oppressive, racist practices in perinatal care settings throughout King County. We represent Families of Color Seattle, Global Perinatal Services, InterCultural Children and Family Services, Mother Africa, and the Somali Health Board.
In these listening sessions, we asked our program participants about their experiences in perinatal care settings within large healthcare systems. The purpose of the project is to share out the lived experiences of families impacted by racism in maternal health and prenatal care in King County. By increasing the awareness of our care providers and leadership in large institutions, we aim to institutionalize anti-racist and pro-equity practices in health care.
During a time for parents to be excited and to memorialize their experiences, our families feel shame and a lack of connection with the systems established to provide trust and care. Below is a list of themes from families’ lived experiences shared in our listening sessions.
- We, as people of color in perinatal care, feel fear going to large system perinatal care providers.
- We feel like we cannot trust our perinatal care providers from large healthcare systems.
- We experience an increase in postpartum depression from not being heard when we have concerns that are not addressed, and this impacts the quality of service that we’re given.
- We feel bombarded with safe sleep information, but do not feel comfortable having conversations about sleeping arrangements.
- Providers do not ask questions about cultural practices and needs. We want to talk about cultural practices, but are not give the opportunity, and do not feel safe sharing cultural practices with providers who do not express an interest or understanding of differences.
- Providers do not provide risk reduction guidance for co-sleeping.
- Birthing plans that we share are not followed or taken seriously.
- We feel rushed and must come prepared with questions instead of having collaboration in our care.
- We must be persistent to get heard.
- We feel guilt and overwhelm during our pregnancies and postpartum.
- When we have health issues, we are not taken seriously which results in immediate care being ignored.
- For those of us who have had complications during birth, we’ve had to receive a C-Section then we are pressured to get our tubes tied with the surgeon suggesting why not prevent other pregnancies while the patient is already being operated on. This makes us feel like our babies should not even be born.
- We feel neglected by healthcare providers during postpartum appointment with the focus on our newborns and not us, the parents.
- Healthcare providers ask us inappropriate questions about how we plan to afford our new baby instead of asking if we have enough support or if we need resources.
We feel blamed for how racism has impacted our lives and the lives of our ancestors.
We encourage large system providers to listen, build trust, and be empathetic to their clients and their experiences. Ask the pregnant person about cultural practices around caring for a baby, ask about the wellbeing of the whole family, and create a safe space for families to share and ask questions. Steps to promote equity in perinatal care can include:
- Promote equity through perinatal quality, including communicating equity as a priority through leadership.
- Leverage data and enhance surveillance.
- Educate clinicians on historic and current oppressive practices that impact the lives and health of families who are people of color.
- Engage in strategic partnerships with communities of color to hear and understand impacts and implement practice recommendations through collaboration.
- Implement policy and procedure changes for patients who are people of color; be more conscious of the differences between social and economic separation between people of color and white people.
- Provide greater use of medical interpretation services, expanding the racial/ethnic diversity of the health professions workforce, and developing provider training programs and tools in cross-cultural education.
- Diverse Workforce: Increasing racial and ethnic diversity among healthcare providers is essential. Patients feel more comfortable with providers they feel they have more in common with.
- Community Engagement: Engaging with communities directly helps build trust. Healthcare providers can participate in community events, workshops, and health fairs to establish and build rapport to address specific needs of the community they serve.
- Accountability when there is feedback on experiences of bias by patients.
Thank you to the Authors of this work, their colleagues, and most importantly the families they serve:
Abbie Altamirano and Christina Tang, Families of Color Seattle
Faisa Farole, Global Perinatal Services
Michelle Curry, Randi Kemp, Leslie Webb, IMH-E®, InterCultural Children & Family Services
Colleen Abdi, Carol Gicheru, Jumaa Sulieman, and Clair Wairimu, Mother Africa
Ladan Abdi, Fatma Abdinasir, and Zahra Mohamed, Somali Health Board