In an early released article in Pediatrics, Devlynne Ondusko, MD, and colleagues at the Oregon Health & Science University and University of Colorado School of Medicine conducted a single-center interview and focus group study to examine the experiences of Black families who had an infant in the neonatal intensive care unit (NICU) and elicited their recommendations for improving quality of care (10.1542/peds.2024-067473).
The study was grounded in the reproductive justice theoretical framework, which goes beyond the legal right to reproductive health care and is centered on 4 fundamental human rights: the right to bodily autonomy, the right to have children, the right to not have children, and the right to parent those children in a safe community.
A total of 13 individuals, including 9 mothers, 3 fathers, and 1 grandmother, each of whom had an infant in the NICU, were included. Eleven self-identified as Black, 1 as Asian and 2 as multi-racial (non-exclusive categories); their infants were admitted to the NICU for prematurity (9 infants) and genetic syndrome (4 infants). Unlike research using classical statistics, qualitative studies enroll participants until thematic saturation is reached, which means the point at which no new themes or patterns emerge, and thus a small number of participants is expected and is not a weakness of the study.
The study results are very upsetting. The treatment that Black families experienced was blatantly racist and discriminatory in many aspects, and their experiences cannot be disregarded or minimized. I caution each of us to avoid saying, “Well, that does not happen in my institution,” or “I would never say or do that.” Examples of described instances included being “brushed off” after sharing concerns about the infant, fearing being reported to Child Protective Services if one raised medical care concerns or did not visit daily, and NICU “rules” being enforced for Black but not White parents. Almost half or more of participants did not know about the existence of key NICU resources, such as a virtual video call program with the infant, infant safety and CPR classes, transportation assistance, and a patient advocate service.
Recommendations to improve the “untrustworthiness” of the system included:
- Engaging parents in parenting and teaching them skills to improve their baby’s health
- Offering more mental health services and making them more accessible
- Increasing staff diversity and cultural awareness
- Respecting families’ concerns and engaging in shared decision-making
- Purposefully assuring consistent rule enforcement to prevent biased treatment
Whether you practice in the NICU, provide care for NICU graduates, or neither, this impactful study offers life lessons we can each strive to hear and heed.
