Abstract
BackgroundThe death of a newborn is a traumatic life changing event in the lives of parents. We hypothesized that bereaved parents of newborn infants want to have choices in the personal care of their infant at the end of life.MethodsParents who had suffered a perinatal or neonatal loss between 1 and 6 years before the survey in a regional level IV neonatal intensive care unit (NICU) and associated labor and delivery room were invited to participate. Parents chose between an online survey, paper survey or telephone interview. The survey included multiple choice and open ended questions.ResultsParents prefer multiple options for the personal care of their infant at the end of life. Emergent themes were need for guidance by the medical team, memory making, feeling cared for and respected by staff, and regrets related to missed opportunities.ConclusionWhile parents differ in their preferences in utilizing specific personal care options for their infant’s end of life, they share a common preference for being presented with multiple options to choose from and in being guided and supported by healthcare providers, while being afforded the opportunity to make memories with their infant by bonding with and parenting them.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0063-6) contains supplementary material, which is available to authorized users.
Highlights
The death of a newborn is a traumatic life changing event in the lives of parents
Four out of 1000 live births in the United States end in neonatal death before 28 days, while three out of 1000 pregnancies end in stillbirth [1]
Six parents of infants who died in the neonatal intensive care unit (NICU) and 22 parents of infants who died in utero or in the labor and delivery room without admission to the NICU responded to the survey
Summary
The death of a newborn is a traumatic life changing event in the lives of parents. We hypothesized that bereaved parents of newborn infants want to have choices in the personal care of their infant at the end of life. The experience of stillbirth or neonatal death may lead to psychological sequelae in parents, including anxiety, post-traumatic stress disorder and depression [2,3,4,5]. How caregivers interact with parents greatly impacts their experience of stillbirth or their infants’ end of life. Provider-parent communication and decision-making play a key role in determining the degree to which parents are satisfied with the care that they and their baby received, as well as in parents’ long-term grief response [7, 8].
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