Infant end-of-life care: the parents' perspective

Objective: The purpose of this study was to identify factors important to parents in their infant's end-of-life care. Study Design: Participants were parents ( n =19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infant's end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS). Results: Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers. Conclusions: Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.