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 inequities in health outcomes are pervasive across the life course, including pregnancy, birth, and neonatal periods, driven by structural racism and resource inequities. Families report racism and dissatisfaction with care in obstetric and NICU settings, and inequities in neonatal outcomes persist. Centering marginalized perspectives—drawing from Black feminism and critical race theory—along with community engagement throughout the research cycle, is advocated to develop ethical, relevant, and impactful solutions. The REJOICE study’s phase 1 identified local racial inequities in neonatal outcomes and adverse social events, and documented parent and staff experiences with racism and discrimination. Building on this, phase 2 (this study) aimed to understand mechanisms by which local NICU racial inequities are perpetuated and to co-generate paired, action-oriented recommendations from Black and Latinx parents and multidisciplinary staff to address them.

Prior qualitative work documents unequal treatment and racism experienced by Black mothers in NICUs, including interpersonal, institutional, and structural forms, leading to behavior modification to avoid retribution (e.g., studies by Witt et al. and Ajayi et al.). Frameworks promoting antiracism in neonatology emphasize community-centered approaches, diverse family advisory input, and engagement in clinical and academic settings. Solutions proposed in prior literature include racial/cultural concordance, bolstering hospital-based resources, culturally responsive care, improved staff training, and policy interventions. Latinx parent perspectives are underrepresented; existing studies often identify stressors like language barriers and financial pressures but may underreport racism explicitly. Broader healthcare literature links clinician burnout and systemic inefficiencies to reduced humanism, which can exacerbate inequities. Professional bodies (AAP, ACOG) call for addressing racism in maternal-child health. This study aligns with and extends prior work by including both Black and Latinx parents alongside staff in shared focus groups to pair mechanisms with actionable recommendations.

Design: Qualitative study using four semi-structured, in-person focus groups with optional follow-up audio diaries; thematic analysis. Setting: Single-center urban tertiary care NICU (UCSF), July 2022–July 2023. Participants and eligibility: Parents self-identified as Black/African-American or Hispanic/Latinx with infants admitted to the UCSF NICU within the past 3 years; English or Spanish primary language. Staff participants included any NICU staff member employed during the study period. Recruitment via hospital admission lists, phone, email, in-person approaches, and flyers. The study design and conduct were led by racially marginalized researchers, with a family advocate and psychologist to embody principles of centering marginalized perspectives. Procedures: Four 4-hour focus groups held in hospital conference rooms; conducted by three NICU provider-researchers with in-person Spanish interpreters. A psychologist and family advocate attended for support and led an empowerment exercise for parents at session start. Sessions began with presentations of REJOICE phase 1 findings (quantitative inequities; qualitative parent data; staff data; no new data in session 4). Guides probed reactions to inequity data, personal experiences of racism/discrimination, mechanisms, and recommendations. Introductions allowed sharing of intersectional identities. Rules for engagement, permission to pause/withdraw, and access to mental health support were provided. Children were welcome for convenience. Optional audio diaries were solicited after each session. Participants were remunerated; sessions included a break with lunch. Data collection: Audio-recorded sessions transcribed by a non-AI service. A brief questionnaire and transcripts captured demographics. Analysis: Transcripts managed in Dedoose. Three independent coders developed a preliminary codebook, added inductive codes as needed, coded transcripts independently, and met after each session to resolve discrepancies and refine a final codebook with definitions. Thematic analysis was applied; themes were generated and refined through iterative comparison and discussion until consensus. Thematic saturation was achieved by session 3. Participants reviewed the manuscript and provided feedback. IRB: UCSF IRB exempt determination; verbal informed consent obtained.

Sample: 16 participants (8 parents/caregivers, 8 staff). Gender: 9 female (56.3%), 7 male (43.8%). Race/ethnicity: 6 Black (37.5%), 5 Latinx (31.3%), 3 White (18.8%), 2 Asian (12.5%). Staff roles: 4 clinicians/clinician leaders (50.0%), 4 family social support staff (50.0%). Attendance: 9 attended one session (56.3%); 7 attended multiple (43.8%). Six audio diaries completed. Themes (mechanisms of inequities): - Complex power dynamics: Parents perceived staff’s power in medical decision-making and disciplinary actions (e.g., calling CPS, security). Parents oscillated between self-advocacy and silence due to fear of retribution; knowledge differentials compounded inequities. - Dehumanization and racism (interpersonal and institutional): Black parents reported being racialized as uneducated/angry, modifying behaviors to avoid being labeled and policed. Latinx parents, while often expressing gratitude, described suboptimal care, invisibility/erasure, and distressing errors; language concordance improved bonding but compassion could transcend language barriers. System pressures (overwork, time constraints) reduced humanism. - Societal inequities exacerbate dehumanization: External stressors (e.g., rent, childcare, immigration, housing insecurity) compounded NICU trauma; needs often persisted post-discharge, with gaps in outpatient support. Themes (recommendations): - Redistribute power by treating families as true care partners via timely orientation, comprehensive education, transparent communication, discharge training, and supportive responses to crises rather than disciplinary actions; consider peer support within first 24–72 hours. - Transform space and staff to promote humanism and inclusion: Increase racial/cultural diversity and Spanish-speaking staff; establish minimum criteria for staff-parent interactions (greeting, eye contact, introductions) and encourage humility and error acknowledgment; reduce workload and staffing ratios to enable compassionate care. - Mitigate harm within/outside NICU: Expand peer support and family liaison roles; increase social work and mental health staffing (including outpatient support); enhance resources addressing social drivers of health; implement routine feedback mechanisms (e.g., brief daily surveys). Focus groups themselves were experienced as therapeutic and community-building, fostering “radical optimism.”

Findings directly address how racial inequities arise in a local NICU and delineate actionable, consensus recommendations co-developed by Black and Latinx parents and staff. Power imbalances, interpersonal and institutional dehumanization and racism, and broader societal inequities interact to perpetuate inequities. Recommendations emphasize shifting power toward families through orientation and education, enhancing humanism by diversifying staff and standardizing respectful interactions while reducing workload, and mitigating harm via strengthened peer, social work, and mental health supports, including after discharge. The approach aligns with and extends prior literature by integrating parent and staff perspectives in shared sessions and explicitly pairing mechanisms with solutions. The study highlights that fostering humanism toward staff (e.g., addressing burnout drivers) can enable greater humanism toward families. Focus groups functioned as an intervention as well, building trust, mutual empathy, and actionable dialogue, though tensions arose at times, contributing to authentic engagement and solution generation.

This study advances understanding of mechanisms underpinning NICU racial inequities and offers concrete, community-driven recommendations: redistribute power by treating families as true care partners; transform space and staff to promote humanism and inclusion; and mitigate harm through peer support and resources addressing social drivers of health. Focus groups were well-received and therapeutic, underscoring their promise as both diagnostic and interventional tools. Future research should implement and rigorously evaluate these interventions across settings to reduce racial inequities in the NICU.

Potential selection bias if parents or staff with more extreme experiences with racism/discrimination were more likely to participate. Group-think bias is an inherent risk in focus groups and cannot be excluded.