National survey of children's hospitals on legacy-making activities

Abstract

Objective: Many hospitals offer legacy-building activities for children with serious illnesses or their family members, yet legacy-making has received little empirical attention. This descriptive cross-sectional study examined healthcare provider perceptions of legacy-making activities (e.g., memory books) currently offered by hospitals to pediatric patients and their families. Methods: Healthcare providers in seventy-seven (100%) teaching children's hospitals across the United States completed an electronic survey. Results: Nearly all providers surveyed reported offering legacy-making activities to ill children and their families, with patients and families usually completing the activity together. Most activities were offered before a patient died and when cure is no longer being sought. Perceived outcomes included benefit to bereaved families and a tangible memento of their deceased child. Conclusion: Legacy-making may enhance life and decrease suffering for dying children and their families. Healthcare professionals can facilitate opportunities for children and their families to build legacies. Additional research is needed to examine activities across different age groups and conditions, the best time to offer such activities, and associations with positive and negative outcomes for ill children, their family members, and the bereaved. © Copyright 2012, Mary Ann Liebert, Inc. 2012.