Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States

Abstract

Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, legacy interventions offered by children's hospitals have not been recently described. Objective: To describe current legacy services offered by children's hospitals in the United States and compare with our previous results. Design: Descriptive cross-sectional design. Setting/Subjects: Participants included providers (N = 54) from teaching children's hospitals in the United States. Measurements: Electronic REDCap survey.Results: Similar to our prior research, 100% of respondents reported that their hospital offers legacy activities with 98% providing such services as a standard of care. Notable increased numbers of children are participating in legacy interventions compared with the previous study, now with 40% (compared with 9.5% previously) of participants reporting >50 children per year. Patients being offered legacy activities include neonatal intensive care unit (NICU) patients, those with life-threatening traumatic injuries, those on life support for extended periods of time, and those referred to hospice. Although not statistically significant, the percentage of hospitals offering legacy-making to children with cancer, neurodegenerative diseases, and life-threatening illnesses is slightly increased from the prior time point. Conclusions: Children across developmental stages and illness contexts and their families can benefit from both the memories generated through the process of legacy services and the subsequent tangible products. Providers should continue to offer legacy opportunities to seriously ill children and their families across a wide array of settings and illness contexts.

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

“…Participants in this study did associate legacy with death at times, but it was typically in the context of what is being done now or in the future – before death occurs – versus the adult conception of legacy as something left behind after death. This forward‐thinking view of legacy that children hold is problematic when positioned alongside current clinical legacy building intervention practices, which have operationalized the concept of legacy as an intentional act reserved for the anticipated or actual end of life (Akard et al, 2021; Foster et al, 2012).…”

“…These activities have traditionally taken the form of tangible creations (e.g. plaster hand moulds, painted handprints, memory books or photo albums) and have been reserved for intentional use during the end‐of‐life or bereavement periods (Akard et al, 2021; Foster et al, 2012). Although offered to a child and family rather than an elderly adult in said situations, these concrete, legacy building activities facilitate Erikson's (1950) crises of generativity versus stagnation and ego integrity versus despair.…”

“…More recently, scholars have pushed for a re‐imagination of the concept of legacy in healthcare settings, challenging the idea that the standardized, tangible interventions currently offered (Akard et al, 2021) effectively meet the diverse and subjective coping needs of children and families navigating illness or injury (Boles & Jones, 2021; Boles, Jones, et al, 2020; Jones, et al, 2022). Imagining legacy interventions in this way may make space for more intentional assessment of legacy perspectives and preferences so that more individualized legacy‐oriented interventions can be facilitated throughout healthcare experiences.…”

Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer

“…24 Many children's hospitals provide diverse legacy interventions (eg, handprints, art, photography, writing, video) as a part of standard care for seriously ill children and their families. 25,26 Further, research has supported the feasibility and acceptability of legacy interventions using digital storytelling for children aged 7 to 17 years with recurrent or refractory cancer. 19 Despite its importance and feasibility, understanding adaptive coping strategies of children with serious health conditions and enhancing their adaptation through such interventions have received less attention compared to work with parents, caregivers, siblings, or healthy children and adolescents.…”

“…24 Many children’s hospitals provide diverse legacy interventions (eg, handprints, art, photography, writing, video) as a part of standard care for seriously ill children and their families. 25,26 Further, research has supported the feasibility and acceptability of legacy interventions using digital storytelling for children aged 7 to 17 years with recurrent or refractory cancer. 19…”