Work

Audio-diary reflections after community focus groups to address local racial inequities in the neonatal intensive care unit

Year: 2024

Type: article

Abstract: Extensive literature highlights the persistent racial inequities experienced by families in the neonatal intensive care unit (NICU) [ 1 ]. Scholars have recommended community-based approaches to addressing racial inequities, such as focus groups that invite community members to exchange ideas and express opinions [ 2 , 3 ]. Focus groups are designed to disrupt power hierarchies between researchers, moderators, and participants, encouraging participants to share stories, articulate perspectives on social and health issues that affect them, and recommend strategies to address them that are grounded in lived experience, transforming participants into agents of change [ 3 ]. In the Racial and Ethnic Justice in Outcomes in Neonatal Intensive Care (REJOICE) study, we previously highlighted serial focus groups with staff and parents to address racial inequities in the NICU [ 4 ]. In this study, we aimed to understand the impact of the focus groups using follow-up audio diaries. As detailed in the previous article [ 4 ], semi-structured focus groups were conducted in 2022-2023 in an urban level 4 NICU with 8 multidisciplinary staff and 8 Black and Latinx parents with children previously hospitalized in the NICU [ 4 ]. Following the focus groups, participants were offered to conduct audio diaries on their phones or audio recording devices. Six out of 16 focus group participants recorded audio diaries. All participants were female, and identified as Black, Latinx, and Asian. Instructions for the audio-diary guide included 10 structured questions ( Supplementary Appendix ). Audio diaries were recorded, transcribed, and uploaded into Dedoose software. Thematic analysis was utilized to analyze the data. Three researchers developed and applied the codebook to transcripts, generated themes independently, and met together with the larger study group to discuss, develop, and organize the themes. Four themes were developed (Table 1 ). Whereas the focus group discussion was centered initially on parent experiences with racism and discrimination in the NICU, parents also learned about staff experiences. Although staff and parent roles are distinct, both groups shared experiences of trauma, emotional tolls, and fatigue while in the NICU. Parents and staff found meaning, new realizations, and appreciation for each other and their roles when they reflected on humanism and intentions. Parents noted differences in staff perspectives, yet shared goals of desiring the best outcome for the child. This newfound shared empathy deconstructed parents preconceived notions of the apathy of healthcare staff and promoted shared bidirectional recognition of humanity. While reflecting on the focus group sessions, participants described the feeling of power sharing and deconstructed hierarchies of power. Power is the possession of control or authority, and in this case, applies to participants speaking up and advocating for change [ 5 ]. Parents were encouraged to speak up after witnessing other parents share their raw and uncut experiences and truths. These observations fueled optimism and hope among participants. Participants described the focus groups as catalysts for change. Parents described the NICU as an isolating place in both their racialized experiences and traumatic hospitalization experiences. Focus groups were perceived as a place for validation of comparing their similar but unique experiences. Validation, meaning acknowledging, and accepting another person’s experience or world-view, was positive, healing, and combated prior sentiments of isolation, doubt, and feeling “crazy” as a result. Through bidirectional shared empathy, power sharing, and validation, participants described therapeutic, relieving, authentic, and powerful experiences. The focus groups evoked a strong emotional response and catalyzed a commitment for actionable change. Staff described concrete next steps for changing their behaviors. Reflection continued beyond the sessions and provided a unique opportunity to revisit unaddressed emotions and to advocate for families in the NICU.

Source: Journal of Perinatology

DOI: 10.1038/s41372-024-02176-y