Publication
Meaningful Display of Legacy Items Among Families Experiencing a Perinatal, Neonatal, or Infant Death
Smith V, Kaushik R, Rodriguez M, Vandermeer R · Journal of Pain and Symptom Management · 2024
Outcomes: 1. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does not address what families do with perinatal palliative legacy items after a death. This study explores display of palliative legacy items in the family's home. Our findings suggest displayed items may be beneficial to families months later, improving ongoing deceased infant identity in the family. Introduction: Current literature in Perinatal Palliative Care (PNPC) suggests the family's ability to create an identify for their child is associated with improved outcomes. Family interaction with legacy items openly displayed in homes may impact ongoing deceased infant identity. Method(s): The University Hospital Perinatal Palliative Care Program provides formal palliative services to families experiencing 2nd and 3rd trimester losses. The program provides legacy items that promote ongoing conversations about the deceased infant even after the family returns to the community. For example, the team gives each family individualized, framed foot/handprints. Between July 2020 - July 2022, our PNPC team conducted semi-structured parent interviews following death in the perinatal, neonatal, or infant period. We collected demographic information, gestational age at death, cause of death, legacy items created, and familial use of the items. Result(s): Twenty-seven parents of twenty-eight infants (one twin gestation) were interviewed. Age at death ranged from 17 3/7 weeks gestation to 7 months of age (median age=25 2/7 weeks). The most common cause of death was intrauterine fetal demise (n=14, 50%), followed by previability (n=6, 21.4%). The overwhelming majority of families have "publicly" displayed legacy items in their home. Of note, the PNPC team noticed families connected strongly to framed prints, even when there was no or limited interaction with the infant. Discussion(s): This study provides a glimpse of how families use PNPC legacy items in the home to sustain deceased infant identity. Our program uses prints to model identity formation during both print collection and gifting of the framed prints. These findings suggests that such modeling may be beneficial to families months later. Conclusion(s): Family interaction with legacy items and meaningful displays in their homes creates lasting connection to their child's identity. Next steps involve exploring how legacy item displays impact family mental health outcomes. Keywords: Loss, Grief, Bereavement / Models of Palliative Care DeliveryCopyright © 2024
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.