Parent and staff focus groups to address NICU racial inequities: "There's radical optimism in that we're in a different time and we're not doing it alone"

Racial health inequities are pervasive, with marginalized groups experiencing higher risks of morbidity and mortality across all life stages, including during and after birth. Black and Indigenous populations disproportionately experience complications and mortality during childbirth and infancy. Existing literature documents dissatisfaction with healthcare and experiences of racism in various settings, including NICUs. To address this, the study adopted a community-centered approach, drawing on Black feminism and critical race theory, prioritizing marginalized perspectives. Phase 1 of the REJOICE study identified racial inequities in neonatal health outcomes and experiences of racism. Phase 2, the focus of this paper, aimed to understand the perspectives of NICU staff and marginalized parents on the perpetuation of these inequities and to generate paired recommendations for addressing them.

Several studies have examined unequal treatment in the NICU from the parent perspective, particularly focusing on Black mothers' experiences with various forms of racism. This study builds upon and reinforces findings from previous research, highlighting similar experiences of racialization and suggesting additional strategies for intervention. It also offers insights into the experiences of Latinx parents, a group often understudied in this context. While previous research has identified language barriers as major contributors to inequities, this study highlights the role of invisibility and neglect in the experiences of Latinx parents. Additionally, the study incorporates the perspectives of NICU staff, emphasizing the importance of systemic changes to improve their working conditions and ultimately enhance the quality of care provided.

This study recruited Black and Latinx parents and multidisciplinary staff from an urban tertiary care NICU. Eligibility criteria for parents included self-identification as Black or Latinx, having a child admitted to the NICU within the last three years, and speaking English or Spanish. Staff members were eligible if employed at the NICU during the study period. Four 4-hour semi-structured focus groups were conducted over several months, facilitated by racially marginalized researchers, a family advocate, and a psychologist. Each session began with a presentation of relevant data from Phase 1 of the REJOICE study. Focus groups were audio-recorded and transcribed. Three researchers independently coded the transcripts, using thematic analysis to generate and refine themes. Thematic saturation was reached by session 3. Following focus groups, participants were invited to record optional audio diaries. Data analysis involved independent coding by three researchers, followed by consensus meetings to resolve disagreements. Thematic analysis was used to identify and analyze recurring themes.

Sixteen participants (8 parents, 8 staff) participated in the four focus groups. Three themes emerged describing mechanisms of racial inequities: complex power dynamics between parents and staff, interpersonal and institutional dehumanization and racism, and societal inequities exacerbating dehumanization. Power imbalances were evident in medical decision-making and the potential for disciplinary action. Dehumanization manifested as racial stereotyping, invisibility, and neglect. Societal inequities, such as housing insecurity and financial stress, compounded the challenges faced by families. Three additional themes emerged focusing on recommendations to address racial inequities: redistributing power by treating families as true care partners; transforming the space and staff to promote humanism and inclusion (including increased staff diversity and minimum interaction criteria); and mitigating harm through peer support and resource allocation to address social determinants of health. Focus group sessions themselves were seen as therapeutic, promoting community building and emotional support among participants.

The findings highlight the interconnectedness of power dynamics, dehumanization, societal inequities, and racial inequities in the NICU. The recommendations align with previous research, emphasizing the need for systemic changes to address these issues. The study's strength lies in its community-centered approach, prioritizing the perspectives of marginalized parents and staff. The focus groups proved effective in building trust and fostering open dialogue, leading to actionable recommendations. The therapeutic nature of the focus groups themselves suggests a potential additional intervention strategy.

This study provides valuable insights into the mechanisms of racial inequities in the NICU and offers practical, community-driven recommendations. The findings reinforce the need for power redistribution, humanism promotion, and comprehensive support systems. Future research should focus on implementing and evaluating interventions based on these recommendations to reduce racial inequities and improve the overall experiences of families and staff within the NICU.

Potential selection bias may have occurred as participants with more extreme experiences may have been more likely to volunteer. Groupthink bias is also a potential limitation in focus group studies. While the study aimed for diversity, the small sample size limits the generalizability of findings to other NICUs.