Phase 1:
Quantitative Data
•We looked at the charts of 3,290 infants who spent time in the UCSF NICU for any reason between 2017-2019
•We asked if there were differences in the care we give, or outcomes based on race/ethnicity
•We always compared groups to a reference group which was white families
What care and outcomes did we choose to investigate?
•Standards of care: antenatal steroids, low temperature when born, blood stream infection, breastmilk at discharge
•Outcomes: pneumothorax, chronic lung disease or BPD, growth velocity, premie blood vessel condition (patent ductus arteriosus), premie Intestine condition (necrotizing enterocolitis), severe brain bleed
•Adverse Events: urine toxicology screen, security called to bedside, child protective services referrals, behavioral contracts
What did we find?
•Across most of the care and outcomes we investigated, there were no differences by racial/ethnic groups for other care and outcomes
•Black families were at higher risk of CPS referrals, behavioral contracts, urine toxicology screening, security calls
•Black & Latinx families went home with established breastmilk supply less frequently than white families did
•Black & Latinx infants were at higher risk of a premie intestine condition called necrotizing enterocolitis (NEC) compared to white families
Qualitative Data:
Parents and providers filled out surveys and participated in interviews to ask about their general experiences and experiences with racism and discrimination. Three main themes encompassed the majority of parental NICU experience: How the baby was treated, how the parent(s) were treated, and staff reactions to parent advocacy in the NICU. Provider data analysis is still undergoing.
Many parents and providers had positive experiences and were grateful for the overall excellent care and comraderie amongst staff members. In an effort to share and improve care we will not focus on positive quotes here but instead focus on areas where we can improve.
Examples of negative experiences using quotes from parents and providers include:
“A provider made me cry with uncaring bedside manner, explained things to me as if I were stupid, and kept looking at their watch.” - Black parent
“I feel sometimes it can be my baby’s care times but the [staff] will not come because she is with her other patient whose family is the same race as them. I can also see a look of mugging [disdain] when they walk in my room.” - Latinx parent
“The ICN frontline providers are not as diverse as their patient population. We lack employees who are bilingual and that often leads to families (whose first language is not English) to be not as strongly advocated for.” - staff member
“I feel like as a Black woman I have not received the mentorship or community that my peers have, I haven’t received the same opportunities or been encouraged into them... I notice that when I take care of Black families they lay everything out on the table to me, their woes, and their relief that I am there.” - staff member
“Bring it to the forefront so everyone knows and can make positive changes” - staff member
Where can I read more about the findings from Phase 1 of the REJOICE study?
Transparency & spreading the word about our findings is an important step! We hope it will encourage other NICUs to ask the same questions and address inequities that they find.
UCSF posted about the REJOICE study on the front page of their news website. Direct link to article here.
Study findings of racial inequities in adverse social events was published in The Journal of Pediatrics. Link found here.
More study results are still forthcoming. We will post updates when they are available.