Objective: To identify how family advocates and clinicians describe disparities in NICU quality of care in narrative accounts.
Study design: Qualitative analysis of a survey requesting disparity stories at the 2016 VON Quality Congress. Accounts (324) were from a sample of RNs (n = 114, 35%), MDs (n = 109, 34%), NNPs (n = 55, 17%), RN other (n = 4, 1%), clinical other (n = 25, 7%), family advocates (n = 16, 5%), and unspecified (n = 1, <1%).
Results: Accounts (324) addressed non-exclusive disparities: 151 (47%) language; 97 (30%) culture or ethnicity; 72 (22%) race; 41 (13%) SES; 28 (8%) drug use; 18 (5%) immigration status or nationality; 16 (4%) sexual orientation or family status; 14 (4%) gender; 10 (3%) disability. We identified three types of disparate care: neglectful care 85 (26%), judgmental care 85 (26%), or systemic barriers to care 139 (44%).
Conclusions: Nearly all accounts described differential care toward families, suggesting the lack of equitable family-centered care.