"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions.
Maile T JonesElena AlbaneseJessika C BolesPublished in: Palliative medicine (2023)
Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.