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Experiencing the pediatric intensive care unit: Perspective from parents of children with severe antecedent disabilities*

Objective:To describe the experience of pediatric intensive care hospitalization from the perspective of a parents of children with severe, antecedent disability. Design:Qualitative analysis of data obtained through semistructured interviews. Setting:Pediatric intensive care unit (PICU) in a children’s hospital. Subjects:Parents of eight children admitted to the PICU with severe antecedent disabilities. Interventions:None. Measurements and Main Results:Data were collected between May and July 2006. Parents were interviewed during, or just after, PICU admission until data saturation was achieved. Seven major themes emerged from analysis: 1) know my child’s baseline; 2) integrate and bridge multiple services; 3) disconnect between role of parent at home versus parent in the PICU; 4) a PICU admission does not equate with respite; 5) high stakes learning environment; 6) heterogeneity within group; and 7) lack of fit within the acute care model. The need for stellar communication and mutuality within the parent-professional relationship were common conceptual threads through all interviews. Conclusions:Children with severe antecedent disabilities and their parents are inextricably linked with critical care services. Study results provide data that can be used to help clinicians better understand the perspectives of these parents and also help guide interventions to improve care and support. Although communication is essential, the structure and processes of critical care including rounding format, continuity in management, and mutual participation models should be tested and tailored to better meet parental needs and expectations.