Paper short abstract:

Stress confronting professionals and parents of preterm infants in neonatal intensive care units is well documented. In this paper I examine the links between uncertainty, distressful life and joyful experiences with reference to findings from an ethnographic study conducted in such unit in Iceland.

Paper long abstract:

Premature birth is a leading cause of infant mortality in the US and Western Europe. It leaves many children with severe disability and, for this reason, it has been hotly debated whether and when expensive intensive treatment for infants with extremely low birth weight should be given. These debates produce numerous ethical and emotional dilemmas. While distress surrounding these experiences has been studied well, the shared moments of happiness and joy have been neglected by research although they play an important part in the process of accepting and dealing with emotional pain, distress and uncertainty, including moral uncertainty. I examine the links between moral uncertainty, distress and joy in the daily life of parents and staff in a neonatal intensive care unit in Iceland where I conducted fieldwork in different periods between 1998 and 2002. I highlight the importance of these conflicting feelings in understanding ethical dilemmas and decision-making about treatment.