The relationship between bereaved parental knowledge of events and satisfaction with care

Abstract

Learning Objectives: Parents have described high-quality end of life care as care that involves giving news with sensitivity, giving clear information on what to expect, and generally preparing families for the circumstances surrounding their child’s death. Because of the often rapid nature of death in the pediatric intensive care unit, intensivists may have less time to adequately prepare families, leaving them unsatisfied with care. In this study we compared bereaved parents’ perceived understanding of the medical events surrounding their child’s death to their overall satisfaction with ICU care. We hypothesized that parents that reported higher perceived knowledge would have higher satisfaction with care. Methods: This was a survey study of bereaved parents whose children died in the PICU & CICU at Nationwide Children’s Hospital from 2012 to 2014. Parents were enrolled 6 months after their child’s death and completed measures that assessed demographics, perceived knowledge of care, and healthcare satisfaction (Peds QL). Results: The sample consisted of 26 parents of 17 children. Parents who rated their understanding of the medical events surrounding their child’s death highly, had higher overall satisfaction (r=.485, p=.026); whereas parents with more lingering questions about their child’s death had less overall satisfaction (r=-.541, p=.011) and less information satisfaction (r=-.508, p=.022). Parents that relied more on support staff (nurses, social work) and family & friends for understanding medical events had higher satisfaction with regard to their emotional needs (r=.559, p=.047; r=.657, p=.015). Reliance on family & friends for understanding also correlated with higher overall satisfaction (r=.439, p=.036). Conclusions: Bereaved parents with higher perceived knowledge of the medical events surrounding their child’s death and less lingering questions about the death have higher overall satisfaction with care. Parents who rely more on support staff and family & friends for understanding of medical events have higher satisfaction of their emotional needs.