title: Hope, disclosure, and control in the neonatal intensive care unit.
abstract: The parents of critically ill newborns who have been admitted to a neonatal intensive care unit (NICU) generally face several challenges. Included in these challenges is the possibility of having access to information and a certain level of disclosure about the diagnosis, treatment options, and prognosis for their newborn. A related challenge is the ability to have some control over the care of their newborn. In this article, I (first author) share my own experiences of having a child admitted to an NICU, and I discuss how a lack of disclosure affected the decision making and involvement I had in my child's care and hindered my ability to find hope. A loss of hope can both contribute to a sense of powerlessness and exacerbate the negative aspects of these NICU experiences. I argue that when health care providers offer parents the disclosure they want and need, as well as a certain amount of control over the care of their child while in the NICU, the ability of parents to find hope will be increased, and they will be better able to cope successfully in the NICU environment.
authors.affiliation: Department of Human Ecology, University of Alberta, Edmonton, Canada. margoc@ualberta.ca
authors.forename: Margo
authors.initials: M
authors.lastname: Charchuk
authors.forename: Christy
authors.initials: C
authors.lastname: Simpson
mesh_terms: D006282:Health Personnel; D006801:Humans; D007231:Infant, Newborn; D015931:Intensive Care, Neonatal; D010290:Parents / Q000523:psychology*; D014342:Truth Disclosure