Medical Mistrust, Distrust, and Trauma: The Impact on Neonatal Care

In the end of 2024 and the start of 2025, some NeoReviews content focused on racial disparities in healthcare, particularly December 2024’s "Recognition and Impact of Policing Families in the Neonatal Intensive Care Unit" and January 2025’s "Framework for Staff and Leaders to Address Racism in Neonatal Intensive Care Units." These two articles delve into the trauma of receiving medical care and the lack of trust between providers and patients—prominently present in BIPOC populations.¹

Mistrust in the medical profession has deep roots in history (e.g., the Tuskegee experiment)¹ and often develops from prior negative experiences within the healthcare system.² Medical distrust impacts preventative screenings, medication adherence, attendance at follow-up appointments, and most importantly, can impact one’s quality of life.³ The trauma and psychological impacts of past care can potentiate the distrust, as evidenced by providers underestimating pain and downplaying or ignoring symptoms.¹

The effect of these issues on perinatal care can be demonstrated by increased maternal and neonatal mortality in the BIPOC population. Unfortunately, over 25% of Black women meet their healthcare providers during their delivery rather than throughout pregnancy and are less likely to have an OBGYN as their provider,¹ initializing delays or avoidance of healthcare services.²  

Medical distrust is often associated with past medical trauma. Unfortunately, childbirth is repeatedly categorized as traumatic, with 1/3 of women reporting feelings of trauma after birth and 5-6% developing PTSD.⁴ Anxiety, shock, and detachment, as well as nightmares, invasive thoughts, and hypervigilant behavior, describe some effects of maternal birth trauma.⁴ Emergency c-sections, delivery complications, and the need for instrument assisted birth (forceps/vacuum) are obstetrical contributions to the trauma.⁴ Admission to neonatal intensive care is another contributing factor.

Frequently, admission to the neonatal intensive care unit (NICU) is unexpected. Only 5-7% of infants need help transitioning to extra-uterine life beyond warming, drying, and stimulating, with those needing extensive neonatal resuscitation, including intubation, chest compressions, and epinephrine, accounting for even less.⁵ Approximately 8% of neonates will require a stay in the NICU due to prematurity or other birth complications.⁶ The trauma associated with a NICU stay reaches beyond hospital discharge, as demonstrated by issues with infant development and mother-child interactions.⁷ Parents of infants in the NICU have a higher prevalence of depression, anxiety, and PTSD during their stay and after.⁶ Maternal PTSD and trauma have been documented to negatively (through controlling behavior) or positively (by increased sensitivity and infant focus) impact the maternal-infant bond, with the degree of communication and support by the medical team also playing a role.⁶

Over the past 20 years, providing care has shifted from a paternalistic approach, where physicians' knowledge and experience would drive their patients to follow recommendations, to one of shared decision-making, family-centered care, and a focus on patient satisfaction versus health outcomes.⁸ The opportunity to form a provider-patient connection has been taken away, thus changing the relationship and creating an environment where mistrust can thrive.

More recently, mistrust has been propagated by misinformation and inaccuracies found on social media.⁸ The notion that vaccines cause autism or that vitamin K is linked to cancer generates suspicion in parents' minds regarding the care of their child.⁸

What can we do? Recognize and acknowledge that racism is a current and ongoing issue in our healthcare system. Past and present traumatic experiences with healthcare can deeply affect the psychosocial well-being of parents, especially after birth trauma. Spending time learning about a family’s history, incorporating their beliefs, relieving fears, and simply listening goes a long way in building the therapeutic relationship and beginning to break down barriers.

Families believe that decreasing biased treatment, allocating resources fairly, being transparent in communication, providing mental health support, and increased engagement in their role as a parent may improve care and thus their experience in the NICU.⁹ Providing education and training to staff on these topics can also positively impact outcomes.⁶ Skin-to-skin care and allowing mothers to provide gentle stimulation to their babies during care times or around feedings improves maternal psychosocial well-being.⁷ Physicians can help families make informed decisions through individualized counseling, education, and listening to patients' views, creating therapeutic trust as a result.⁸

Communication is a constant theme between medical mistrust and medical trauma. After experiencing a traumatic birth, parents verbalized feeling powerless about care decisions and felt dismissed by staff, simply being a “passive recipient of care.”⁴ When parents are heard, fears and concerns can be addressed, allowing parents to participate actively in medical decision-making. Ongoing, consistent communication is a simple intervention that has a lasting impact on a family’s experiences. In the NICU, families are often unable to visit daily; therefore, a phone call providing updates on their baby and allowing an opportunity for questions is an easy intervention to reinforce trust between the providers/staff and the patients and families.

Not all in the medical community feel that trust is an issue that needs to be repaired and deny the problem. It must be recognized and discussed for change to occur. Working toward a trusting, therapeutic relationship has multiple advantages. Knowing your patients and understanding their past provides an opportunity to rebuild trust actively, relieve anxiety, and address fears of care being withheld.¹ Put simply, treating others as you would want to be treated can go a long way in rebuilding the therapeutic relationship.

References

1. Golemon L. Medical Overtesting and Racial Distrust. Kennedy Inst Ethics J. 2019;29(3):273-303. doi:10.1353/ken.2019.0025
2. Benkert R, Cuevas A, Thompson HS, Dove-Medows E, Knuckles D. Ubiquitous Yet Unclear: A Systematic Review of Medical Mistrust. Behav Med. 2019;45(2):86-101. doi:10.1080/08964289.2019.1588220
3. Angelo F, Veenstra D, Knerr S, Devine B. Prevalence and prediction of medical distrust in a diverse medical genomic research sample. Genet Med. 2022;24(7):1459-1467. doi:10.1016/j.gim.2022.03.007
4. Butterworth S, Butterworth R, Law GU. Birth trauma: the elephant in the nursery. J Reprod Infant Psychol. Published online October 4, 2023:1-22. doi:10.1080/02646838.2023.2264877
5. Weiner GM, Zaichkin J. Updates for the Neonatal Resuscitation Program and Resuscitation Guidelines. NeoReviews. 2022;23(4):e238-e249. doi:10.1542/neo.23-4-e238
6. Hartzell G, Shaw RJ, Givrad S. Preterm infant mental health in the neonatal intensive care unit: A review of research on NICU parent‐infant interactions and maternal sensitivity. Infant Ment Health J. 2023;44(6):837-856. doi:10.1002/imhj.22086
7. Holditch-Davis D, White-Traut RC, Levy JA, O’Shea TM, Geraldo V, David RJ. Maternally administered interventions for preterm infants in the NICU: Effects on maternal psychological distress and mother–infant relationship. Infant Behav Dev. 2014;37(4):695-710. doi:10.1016/j.infbeh.2014.08.005
8. Shah SI, Brumberg HL, La Gamma EF. Applying lessons from vaccination hesitancy to address birth dose Vitamin K refusal: Where has the trust gone? Semin Perinatol. 2020;44(4):151242. doi:10.1016/j.semperi.2020.151242
9. Ondusko DS, Klawetter S, Hawkins Carter E, et al. The Needs and Experiences of Black Families in the Neonatal Intensive Care Unit. Pediatrics. 2025;155(1):e2024067473. doi:10.1542/peds.2024-067473