Little time, lasting impact: Bereaved caregiver perceptions of legacy in perinatal and infant loss.

Abstract

Legacy interventions are standard in most children's hospitals, but little is known about how bereaved parents understand and describe the concept of legacy that these interventions are designed to Address. The aim of this qualitative study was to understand the legacy experiences and perceptions of parents who have experienced perinatal or early infant (less than three months of age) loss. Grounded in constructionist epistemology and phenomenological qualitative traditions, ten bereaved parents completed an in-depth phenomenological interview regarding their perceptions of and experiences with the legacy of their deceased child. Interviews were transcribed verbatim and analyzed using an open, inductive coding process to illuminate the essence of participants' experiences. Three themes were identified: 1) legacies are composed of memories and experiences that have a lasting effect on others; 2) healthcare experiences both generate and participate in infants' legacies; and 3) parents' legacy perceptions are shaped by cultural conceptions, spiritual beliefs, and grief experiences. Parents described experiences and interactions with community members and healthcare providers that honored or challenged their perceptions of their child's unique legacy. In the context of perinatal or early infant loss, bereaved parents describe legacy as enduring, unique to each child and family, and heavily influenced by healthcare experiences and staff relationships. Parent-led, legacy-oriented interventions are needed in maternal/fetal, labor/delivery, and neonatal intensive care settings to support parent coping with loss.