Memory-Making in Neonatal End-of-Life Care

Abstract

Experiencing the death of an infant places parents at risk of prolonged and profound grief, therefore providing appropriate psychosocial support for parents is crucial. Current perinatal palliative care guidelines recommend memory-making activities, such as collecting or creating mementos and spending time caring for the infant, as an important aspect of bereavement care. However, evidence to support such interventions is scant. This study used the grounded theory method described by Corbin and Strauss (2015) to explore bereaved parents’ experiences of memory-making in neonatal end-of-life care. Eighteen bereaved parents participated in extensive semi-structured interviews. The core psychosocial process underpinning parents’ experience of memory-making was identified as “Affirmed Parenthood”. This core category was supported by three key themes; “Being a parent”, “Creating evidence” and “Being guided”. “Being a parent” included spending time with the baby before and after death, touching and holding the baby, and providing physical care. “Creating evidence” captured parents’ efforts to collect or create tangible evidence of their baby’s life through photographs and other mementos, and by involving others with their baby to ensure that people outside the immediate family would have memories of their child. Finally, “Being guided” represented parents’ need to be supported and encouraged throughout the process of memory-making. Where all three key themes were addressed in bereavement care, parents experienced affirmation of the significance of their baby’s life, affirmation of the significance of their loss, and affirmation of their role as the baby’s parents.