Presence of Families at the Bedside in the PICU: Prospective, Mixed-Methods Study of Race and Insurance Disparities.

Abstract

Objectives: To determine whether patient race, ethnicity, preferred language, insurance type, and social deprivation index (SDI) are associated with differences in caregiver presence in the PICU and to explore caregiver perspectives on decision-making about time spent at and away from bedside.

Design: Single-center prospective, concurrent mixed-methods study including: 1) a quantitative point prevalence study of caregiver bedside presence, and 2) a qualitative study of interviews with caregivers.

Setting: Seventy-five-bed PICU in a quaternary children's hospital in Philadelphia, PA.

Patients: Over the period 2022-2023, we enrolled: 1) children with anticipated moderate-to-long PICU length of stay and 2) adult caregivers of children in our PICU.

Interventions: None.

Measurements and main results: Multivariable regression tested associations between caregiver presence and race, ethnicity, preferred language, insurance type, and SDI. Semi-structured interviews with caregivers were evaluated using thematic analysis. Among 159 subjects, Black patient race relative to White, and public insurance relative to private, were associated with 18 and 10 fewer hours of caregiver presence during a 48-hour period, respectively. Caregivers nearly universally shared a desire to be present, yet the ability to be present was affected by practical limitations, including job flexibility and family availability.

Conclusions: Public insurance and Black patient race were associated with decreased caregiver presence, disparities that may be explained by practical limitations. Additional work is necessary to explore ways to mitigate barriers to presence and equitable family-centered care and to investigate potential impacts of caregiver presence on health outcomes.