Table 4 Illustrative accounts of implied worse care

From: Disparities in NICU quality of care: a qualitative study of family and clinician accounts

Neglectful care
A family in the NICU was from the Middle East and the mom had a language barrier. The dad was an engineer and very demanding and in extreme denial of his infant’s outcome. Staff avoided going to the room, especially when dad was present. I started to notice that the medical team avoided rounding at the bedside when dad was present and this just widened the gap in care for this infant.—NNP regarding family identified as Asian
A Spanish-speaking mother of a 23-week infant was not provided with a translator before, during, or after delivery to explain what has happening with her baby. I asked for an interpreter to come in to the hospital to help with this special situation and faced push back because it was late at night. The L&D staff thought a translator phone should be sufficient. I felt that the situation would not have been met with such a lack of empathy had the mother been of a different ethnicity.—MD regarding family identified as Hispanic or Latino
A mom approached her infant in an open crib, picked her up, and began trying to put her to breast. Mom’s position was not optimal and the infant wasn’t latching well. The RN approached and was quick to try and convert the breastfeeding attempt to a bottle feeding probably due to the extra time needed related to language barrier and getting lactation help.—RN regarding family identified as Asian
Judgmental care
I see this all the time… the way we treat black moms is definitely different than how we treat white moms. And age plays a factor too—young moms are judged very unfairly. One black mom was judged very harshly for being late for a feeding even though she had a long and challenging transit ride to get to the hospital. A white mother who was late on the same day was greeted with sympathy. A small example but I see moments like this every single day. Also, young black moms who might well have a very good reason for being wary with authority figures (based on years of being treated badly in the system) are judged harshly for “showing attitude”. – Family advocate regarding family identified as black or African American
Our front-line staff (greeter-unit secretaries) react very differently to black families than they do to the traditional white married families. Sometimes they can’t even make eye contact. There is a big need for diversity training.—Nurse Technician (RN Other) regarding family identified as black or African American
Mother in recovery shared the judgement and unkindness she experienced as being labeled a “drug mom” and her daughter a “drug baby” as she was NAS from methadone treatment. She was 4 years clean and sober and still wanted to hide in guilt and shame from the feeling of being an outsider among the others in the unit.—Director (Clinical Other) regarding family identified as Native or American Indian
Systemic barriers to care
I see disparity based on resources and home support for families to be able to visit their babies and partake in their care—this includes many different races and based more on socioeconomic status, but often is black families. These families are limited by care for other children, transportation, etc.—MD regarding family identified as black or African American
Parent was shamed by physician and social worker for “not being at bedside appropriate amount of time”. Parents spoke limited English and had no understanding of the social service protocols or resources. The team essentially was expressing discomfort that the hospital was funding a stay at our local hospitality house but family wasn’t present “enough” at the bedside. But, we had provided no guidance about what was “enough” or “expected”. Family felt shamed and embarrassed that they had not been living up to care team’s UNSPOKEN expectations.—Family advocate regarding family identified as Asian
We cared for a baby whose mother was Asian. She was unable to visit her baby for about a month because of cultural beliefs that she needed to be indoors following delivery. We did not have the capacity to provide a room for her to stay in after discharge for this extended length of time. I believe this interfered with initiation of breastfeeding and maternal-infant bonding. It was also difficult for staff to understand her need to comply with these cultural practices.—MD regarding family identified as Asian
Overlapping language barriers to care
“I have so many stories—I work at a hospital that is mainly black and Hispanic. A critical issue is language! Let’s face it, parents that speak English are always updated more frequently and more engaged in the care of their infant—and we have incredible translator services”.—MD regarding family identified as Hispanic or Latino
“Because this family couldn’t speak English this family wasn’t offered video connection because it took too long to get the interpreter and was considered to be basically a “pain”. This mom didn’t get to see the baby before she died”.—RT regarding family identified as Hispanic or Latino
“There was a delay for the parents to hold their baby of about 4 days because of language barrier. Parents did not understand that they could visit, hold and even get involved in the care such as feeding, bathing, their baby despite using a language line to explain what was going on. We realized the initial interpreter used a different dialect—so these parents didn’t simply understand.”—MD regarding family identified as black or African American
Illustrative stories of implied better care
Privilege and elite care
A physician’s baby was transferred into our unit. Baby was given special treatment, room preference. Attending generally change every two weeks, yet this patient kept the same attending as well as given patent updates privately by the attending. It’s not how we treat every patient.—RN regarding family identified as white
We have a “friends and family” program where people who have donated or affiliated to our hospital executives or board members are enrolled in a special program where they get priority treatment for scheduling doctor appointments and if hospitalized are visited by this department to assist in anyway. Often rules are not applicable to this group. They receive preferential treatment from the organization.—RN regarding identified as white