Caregiver and Provider Perceptions of Health Disparities in the Neonatal Intensive Care Unit: A Qualitative Study

Abstract

Objectives

1) To describe the experience of caregivers and their perceptions of disparate care in the neonatal intensive care unit (NICU) and 2) explore interprofessional NICU provider perspectives on potential biases and perceptions of disparate care.

Methods

This qualitative study was conducted in 1 southeastern level IV NICU. Semistructured interviews assessed caregiver and provider perspectives on NICU care. Purposive sampling ensured ≥50% of caregivers self-identified as racial and/or ethnic minorities. Interviews were recorded, transcribed verbatim, and audio verified. A coding scheme was developed, raw data were systematically coded, and emerging themes were identified using thematic analyses.

Results

Twenty-three caregivers and 14 providers were interviewed, including 5 neonatologists, 6 nurses, and 3 residents. Caregivers were predominantly English-speaking (85%); 96% were mothers with a mean age of 32 years. Neonates were predominantly racial and ethnic minorities (62%). Providers were predominantly White (71%) and female (71%). Five themes emerged 1) ineffective, biased communication between caregivers, providers, and health care team may contribute to disparities; 2) language barriers and lack of interpreter access play a significant role in perceived negative care; 3) lack of caregiver involvement and role in decision-making may negatively influence NICU outcomes, especially for those not able to be present at the bedside; and 4) multiple biases may affect neonatal health disparities.

Conclusions

Our study highlights the importance of considering both provider and racial and/or ethnic minority caregiver perceptions disparities in NICU care delivery. It adds to the literature as one of the few qualitative studies comparing perceptions of disparate NICU care among both caregivers and providers.