Trust, Advocacy, Inequity, and Information: A Qualitative Study of PICU Communication Experiences Among Low-Income Families in the United States.

Abstract

Objectives: Communication challenges and barriers are common during PICU stays, but prior studies have rarely focused on historically marginalized groups such as families with low socioeconomic status and families of color. We aimed to characterize these experiences.

Design: Semi-structured interviews were conducted from October 2023 to April 2025. Interviews were audio-recorded, transcribed verbatim, analyzed, and coded using a constant comparative method.

Setting: A PICU at a tertiary-care academic center in the United States.

Participants: Seventeen families, including 13 mothers, 7 fathers, and 2 grandparents of children with income-based Medicaid insurance admitted to the PICU for at least 5 days.

Interventions: None.

Measurements and main results: Thirteen of 22 interviewees were Black, African American, or Multiracial, 7 were White, and 2 did not indicate race. Major themes included 1) healthcare team behaviors that build or lose family trust; 2) importance of parental advocacy and valuing parent perspective; 3) intersection of race and healthcare experience; and 4) diverse preferences for obtaining information. Families' trust in their healthcare team was influenced by both medical and socioemotional behaviors. Parents desired recognition as experts in their child and trusted the team more when their perspective was included. For some families, experiences with discrimination impacted their trust levels and care experiences. Finally, families obtained information from PICU structures such as rounds but also sought a variety of other sources.

Conclusions: This interview study characterized PICU communication experiences among low-income families with diverse representation. Our findings identified how communication behaviors can build and erode family trust in the healthcare team. We also elicited preferences for obtaining information, which could inform interventions to improve information sharing. Future research on how to develop and assess interventions that improve family trust and satisfaction in inpatient care is needed.