Bereaved Parent Perspectives and Recommendations on Best Practices for Legacy Interventions.

ABSTRACT

CONTEXT Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and best practices for offering and creating legacy interventions remain poorly understood. OBJECTIVES: To characterize bereaved parents' perspectives on the value of legacy activities; to describe parent recommendations for optimizing provision of legacy activities by child life specialists and music therapists. METHODS: In this qualitative study, a purposive sample of 19 bereaved parents of children who died from cancer participated in semi-structured interviews. Interviews were audio-recorded, transcribed, and analyzed inductively using content analysis to identify key concepts and emerging themes. RESULTS: Analysis of transcripts revealed bereaved parent insights and recommendations across three core themes 1) the value of legacy items and interventions; 2) the practical roles, uses, and functions of legacy items, and 3) best practices for offering legacy interventions. Bereaved parents sought meaning and purpose in abstract and concrete manifestations of legacy. Parents often used legacy items in specific ways to promote emotional expression and process their grief. Communication, timing, and creativity significantly influenced parent perceptions of legacy-building. Parents recommended individualized assessments to optimize provision of legacy interventions. CONCLUSION: Bereaved parents emphasized the meaningfulness of legacy-building activities and the need for an individualized approach when offering these interventions. Future research should explore the perspectives and recommendations of patients and siblings on legacy activities.