Holding a Place: Parents' Lives Following Removal of Infant Life Support

Abstract 

There are 34000 neonatal deaths occurring annually in the United States, many of which occur after removal of life support. The purposes of this grounded theory study were to explore and describe parents' experiences with making the decision to discontinue life support for their critically ill infant and to identify the process that allows them to then move forward with their lives after the infant's death. Data were generated by face-to-face and telephone interviews with a theoretical sample of 15 parents. Three thematic concepts with subthemes emerged: Facing the Decision (No Real Choice, Time with the Infant), Life Goes On (Listen to Your Heart, An Abiding Loss, Not Left Out), and Lives Forever Changed (New Perspectives, Preparing to Meet Again). The substantive theory, The Process of Holding a Place, describes the basic social process parents used to carry their deceased infant forward with them in their daily lives.

Keywords: Neonatal life support, Newborn death, Perinatal loss