(857) Parental Perspectives on Factors Shaping Presence in the Pediatric Intensive Care Unit

Introduction: Family-centered care is the standard in pediatric intensive care units (PICUs). While families may benefit from engagement in their child’s care, being present at the bedside does not come without costs. Limited quantitative studies report variability in family presence associated with patient’s age, severity and chronicity of illness, socioeconomic status, and race but do not explore caregiver perspectives around why such variability exists. We therefore performed a qualitative study to explore why caregivers of PICU patients decide to spend time at and/or away from the bedside.

Methods: We performed a single-center, qualitative study between Oct. 2022 and Jul. 2023. Participants were caregivers of children currently or recently hospitalized in the PICU. We purposefully sampled caregivers with objectively documented high and low bedside presence based on a concurrent study on caregiver presence in the PICU. Semi-structured interviews were conducted by phone or in-person, audio-recorded, and transcribed. We used thematic analysis, coding transcripts using deductive codes from the literature and inductive codes that we created from patterns in the data. We then categorized codes and formed themes that represent shared meaning.

Results: We performed 12 interviews with 14 caregivers (low presence=6, high presence=8). Themes underlying caregivers’ decisions around bedside presence included improving child’s care (communicating child’s needs, guiding medical team, assisting child’s coping), fearing the unknown (anticipating or experiencing delayed communication when away), availability of family support (two-parent households, nearby relatives), and parental job flexibility (working virtually, paid or unpaid leave for prolonged stays).

Conclusions: Caregivers perceive benefit of being physically present in the PICU and feel they have a role on the medical team. Practical barriers help to explain why PICU parents decide to spend variable amounts of time at the bedside. Regular and timely communication is essential for caregivers while at or away from the bedside to alleviate anxiety surrounding the unknown and facilitate trust with the medical team.