(800) Communication Experiences Among Low-Income Families in the Pediatric ICU: A Qualitative Study

Introduction: Communication challenges are common in Pediatric ICU (PICU) stays. However, prior studies in PICU communication have not focused on particularly vulnerable groups, including families with low socioeconomic status and families of color. We aim to characterize the experiences of low-income families of diverse racial backgrounds with communication during their child’s PICU admission. Here we report initial themes from thirteen family interviews as part of an ongoing study.

Methods: Semi-structured interviews were conducted with parents of children with Medicaid insurance admitted to the PICU for >5 days. Interviews were audio-recorded, transcribed and qualitatively analyzed using an iterative process to elucidate themes.

Results: Thirteen interviews of median duration 23 minutes (IQR 7) were conducted between 5 and 17 days after PICU admission. Interviewees included 11 mothers, 4 fathers and 1 grandparent of children ranging in age from 2 months to 16 years. 12 interviewees were Black and 4 were White. Notable themes included 1) communication that builds or 2) loses families’ trust, 3) parental advocacy, 4) preferences for obtaining information, and 5) impact of discrimination. Aspects of communication that built family trust in the medical team included perceptions of emotional caring for child and parents, good intra-team communication, time spent with a family, and perceived competence. Trust was lost with perceived intra-team conflict, lack of emotional caring, and lack of continuity. Parental advocacy was viewed as crucial and generally appreciated by the medical team. Parents had diverse preferences for how to best receive medical information including rounds, private conversations, and online. Finally, many families were impacted by prior healthcare beliefs and experiences, as well as prior and current experiences with discrimination in healthcare.

Conclusions: Families provided rich information about their experiences with PICU communication surrounding themes of medical trust, parental advocacy, obtaining information, and discrimination. Characterizing experiences with both positive and challenging aspects of communication among low-income families of diverse backgrounds may help inform future communication interventions for this vulnerable group to improve patient and family outcomes.