Hospitalized children's perceptions of legacy: ‘A symbol of yourself that you leave behind’

Abstract

Background Legacy building is a developmentally grounded, trauma‐informed and family‐centred psychosocial intervention designed to bolster patient and family resilience through collaborative activities and meaning making. However, little is known about the effects of these interventions, partially because of a lack of clarity regarding how children of different developmental levels understand the concept of legacy. Therefore, this study explored the ways in which hospitalized children defined the concept of legacy. Methods Semi‐structured interviews were conducted with 45 hospitalized children (ages 6 to 18 years) on the acute and critical care units of an academic children's medical centre. Interviews were audio‐recorded and transcribed verbatim; transcripts were independently coded by at least two members of the research team using an inductive, line‐by‐line approach; and codes were categorized and assembled into four overarching themes, resulting in a developmental typology of the concept of legacy. Results Participants described legacy as (1) concepts, actions or feelings motivated by the future; (2) represented through both tangible and intangible means; (3) informed by personal, educational, experiential and ideological sources; and (4) experienced as good, bad or neutral. Conclusions The findings of this study demonstrate that hospitalized children are aware of and can articulate an emerging concept of legacy – one that mirrors the progression of cognitive complexity shaped by their unique personal life and healthcare experiences. The developmental typology presented in this study can be a useful starting point for clinicians as they present and facilitate legacy building interventions throughout a child's hospital stay.

“They were here, and they still matter”: A qualitative study of bereaved parents legacy experiences and perceptions

“…These findings align closely with recent research, 3,9,10,12–14 articulating legacy as a representation of one’s intra- and interpersonal characteristics that endures after death and continues to impact those left behind. As Boles and Jones 10 note that legacy can be represented in “concrete or intangible, intentional or serendipitous” (p. 13) ways, bereaved parents/caregivers in this study primarily detailed facets of legacy that cannot be held or touched, but rather remembered and shared.…”

“…By assessing and attending to the individuality of pediatric patients and families, clinicians can facilitate legacy experiences that prioritize subjective components of grief like adaptive coping and continued healing. When these results are considered alongside the legacy perceptions of pediatric healthcare providers, 9 parents/caregivers of hospitalized children, 12 and pediatric patients themselves, 13 reconceptualizing legacy becomes necessary, specifically as a shift away from tangible product to a therapeutic process.…”

“…The interview guide was informed by Moustakas' psychological phenomenology, 15 while also aligning with the authors' previous work on legacy perceptions in different stakeholder populations. 9,[12][13][14] Interview questions focused on the participants' definition of legacy, their thoughts and feelings elicited by the word, and experiences in their lives that led them to define legacy in this way. Additionally, participants responded to questions about the sources of their legacy perceptions, and their experiences of their child's legacy before, during, and after death.…”

“…10 However, emerging research suggests that these interventions could be feasible and beneficial for pediatric patients and their families independent of anticipated treatment or survival outcomes. 10,11 Perceptions garnered from healthcare providers, 9 parent/caregivers of hospitalized children, 12 and pediatric patients ages 6–18 years 13 portray legacy as an individualized, experiential, relational, and transformative phenomenon. To this, a recent systematic review 10 reconceptualized legacy as: .…”

“….an enduring representation of the self -its qualities, experiences, effects, and relationships -built and bestowed across generations. Whether concrete or intangible, intentional, or serendipitous, legacies are avenues of connection, education, inspiration, or transformation (p. 13).…”