Handprints on the soul: The impact of legacy building interventions on bereaved families

Abstract

When a child has a terminal diagnosis, the intervention of legacy building is offered as a standard of care in all of the 77 teaching children’s hospitals in the United States. Legacy building is a group of activities designed to create tangible items, such as hand and foot prints, locks of hair, or scrapbooks, to promote meaning making for dying individuals, while also providing support to family and friends. Nevertheless, research has yet to identify the benefits of such interventions for the surviving immediate family. Thus, the purpose of this study is to examine the impacts of legacy building interventions on bereaved parents and siblings. Specifically, how do legacy building interventions facilitated by healthcare professionals impact bereavement for the immediate family? A qualitative thematic analysis approach was taken to address the research question.

A total of 16 participants representing 8 families, consisting of 11 parents and 5 siblings participated in semistructured interviews. Thematic analysis was utilized and developed into 4 major parent themes emerged: (a) Introduction of legacy building, (b) Experience of legacy building items, (c) Psycho-social care, and (d) Maintaining connection. Additionally, 4 major sibling themes emerged which are (a) Experiences with legacy building items, (b) Sibling grief, (c) Psycho-social care, and (d) Maintaining connection. Implications for clinical practice will be discussed as well as future research.