Objectives: To identify opportunities for improvement in quality of care, we explore Black families' experiences of family support in the neonatal intensive care unit (NICU) during their infant's hospital stay.
Methods: Semistructured qualitative interviews or focus groups (FGs) were conducted to explore Black families' experiences of NICU hospitalization. Inclusion criteria were self-identification as a Black family member and infant admission to our NICU between January 2020 and February 2022. We conducted reflexive thematic analysis of recorded transcripts using Dedoose software.
Results: Three interviews and 2 FGs were conducted with 9 unique families (n = 13 individuals). We organized 10 key themes into "Experiences" and "Recommendations." Experience themes included distrust and fear of the medical setting, hypervigilance and trauma trajectory formation, the myth of "Black hardiness," policing and surveillance, and undermining of Black parenting. Recommendation themes implored NICU staff to earn rather than assume trust, respect family concerns, improve mental health support, provide compassionate care, and support the parenting role.
Conclusions: In this single-center qualitative study of Black families' NICU encounters, families continue to experience differential treatment, which reinforces an untrustworthy medical system perpetuating structural racism. Family recommendations for improving care through transparent communication, advocacy and mental health support, increased engagement in their parental role, and decreasing biased treatment and provision of resources may improve their experience and mitigate hypervigilance and trajectory formation in our NICU.
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