Parents’ Challenges beyond the Pediatric Intensive Care Unit: Fraying at the Seams while Balancing between Two Worlds, Home and Hospital

Abstract

Background: The dominant tradition in studying parents’ responses to their child’s hospitalization in the pediatric intensive care unit (PICU) is to focus on their immediate environment and their children’s well-being. This view of the parents’ experiences fails to describe the broader set of concurrent challenges beyond the PICU that parents carry with them into the PICU. Objectives: This study describes (a) parents’ reactions to juggling their two worlds, home and hospital, when their child is hospitalized in the PICU, and (b) the impact of this juggling on their lives. Methods: Fifteen parents whose child was admitted into a PICU at a tertiary medical center for children in the Pacific Northwest participated in semi-structured interviews. Data analysis and interpretation were guided by grounded theory. Results: The theory grounded in the data and integrated with the core category was Fraying at the Seams while Balancing between Two Worlds, Home and Hospital. Analyses revealed two categories: Bringing My Life to a Halt and Throwing Our Whole Life Off. Conclusion: Even though parents were physically and emotionally present with their child in the PICU, they felt frayed as they concurrently struggled with their physical distance from other children at home. This strain of living in two worlds caused feelings of inadequacy to fulfill their parental role.