(649) Barriers and Facilitators of Family Presence at the PICU Bedside

Introduction: Family presence at the PICU bedside is inequitable. We found that publicly insured families were able to be at the bedside less, and this association was modified by race and ethnicity. We aimed to understand how systemic and hospital barriers and facilitators contribute to these associations.

Methods: We used purposive sampling to enroll primary caregivers of patients admitted to the Seattle Children’s Hospital PICU or cardiac ICU from Jan-Dec 2022 that self-identified as African American or Black, Alaska Native, Native American, spoke a language other than English, or had public insurance. We designed a qualitative interview guide using results from the primary study in an iterative fashion after initial interviews and in consultation with family advisors. Interviews were conducted and recorded clinical social workers. Two members of the team (RO and MS) coded transcripts based on the results of the primary study and inductive coding to explore new themes. We triangulated emerging themes with advisor experiences. Participation was compensated.

Results: We interviewed 9 mothers: 2 spoke Spanish, 3 identified as Black, 2 identified as Alaska Native, 1 identified as Native American, and 7 had public insurance. Participants described barriers to physical and effective presence including other caregiving responsibilities, financial and work conflicts, and the inability to perform self-care in the hospital. These barriers were overcome through self-sacrifice, often resulting in loss of wages, disruption of relationships, reduction in sibling well-being, and negative caregiver physical and mental health. They viewed these sacrifices as necessary due to the need to perform roles at the bedside: advocate, protector, and comforter. Facilitators of presence included knowing what to expect and having a relationship with a member of the medical team.

Conclusions: Caregivers facing disparities in access to the PICU bedside may make sacrifices to overcome barriers so they can serve as their child’s advocate, protector, and comforter. Interventions should aim for equitable allocation of resources to meet all caregiver’s physiologic needs. Additional interventions to meet caregiver’s needs for safety and love and belonging may improve caregiver efficacy in their desired roles.