Collaborative Legacy Building to Alleviate Emotional Pain and Suffering in Pediatric Cancer Patients: A Case Review

Abstract

Childhood cancer patients experience emotional hardship associated with their life-threatening diagnoses. Interdisciplinary team members working in pediatric cancer care can help alleviate physical pain and psychological suffering of children by facilitating collaborative legacy-building activities with patients and families. The contents of this article aim to support legacy building as a medium for emotional healing prior to the end of life. The authors use a case review to contextualize legacy-building projects and provide a comprehensive overview of methods and considerations for these initiatives.

Legacy in paediatrics: A concept analysis

“…The person in question need not be present for these stories to be passed on. With the use of video recordings (Cahalan et al., 2022; Kamrath et al., 2019) and online writing (Buxton & Vest, 2018; Keim‐Malpass et al., 2015), it is possible even for the deceased to continue sharing their own stories. Social media is noted as playing a unique role for adolescents in this respect.…”

“…Bereaved parents commonly report legacy items give them an opportunity to remember, talk about, and feel close to their deceased child (Akard et al., 2021; Andrews et al., 2020; Foster et al., 2012; Love et al., 2022; Schaefer et al., 2020). When patients are able to actively participate in legacy‐making, the interventions allow them to reflect on how they would like to be remembered or what they leave behind: the focus is future‐motivated (Cahalan et al., 2022; Dunbar et al., 2022; Franklin & Cheung, 2017; Schaefer et al., 2020). The internet has further expanded the possibilities available, allowing for patients to have a message posted online after their death (Keim‐Malpass et al., 2015) or loved ones to preserve a deceased person's digital accounts (Buxton & Vest, 2018).…”

“…A distinction has been drawn between legacy‐oriented intervention during chronic or critical illness and legacy‐oriented interventions at end‐of‐life or shortly after death. The child's active participation in the intervention is often considered part of what makes the resulting item so treasured (Cahalan et al., 2022; Schaefer et al., 2020). Without involvement of the child and family—such as in the case of a provider acting alone—any resulting items created are mere keepsakes, not legacy.…”

“…Empirical referents, by their very existence, “demonstrate the occurrence of the concept itself” (Walker & Avant, 2019, p. 179). Both patients and parents report that intentional legacy activities help them see meaning in their experience (Cahalan et al., 2022; Love et al., 2022; Schaefer et al., 2020). For children, creating legacy assists in providing structure during long hospital stays or repeated clinic visits (Cahalan et al., 2022; Sisk et al., 2012), provides a framework for self‐discovery, and allows them to leave part of themselves behind (Dunbar et al., 2022).…”

“…The current state of legacy‐oriented interventions in paediatrics can vary greatly depending on where and by whom a child is treated. These activities are most often led by Certified Child Life Specialists, but may also involve palliative care, hospice, or nursing staff, as well as music or art therapists or spiritual care providers (Akard et al., 2021; Cahalan et al., 2022). The intervention may be a singular event or an ongoing project (Boles & Jones, 2021) and might be done by a provider alone or in collaboration with patients and families (Akard et al., 2021; Foster et al., 2012).…”