When the home becomes a prison: living with a severely disabled child.

The aim of this study was to generate knowledge about how parents who have been part of an ethical decision-making process concerning a son or daughter in a neonatal unit experience life with a severely disabled child. A descriptive study design was chosen using 30 hours of field observations and seven in-depth interviews, carried out over a period of five months with parents who had been faced with ethical decisions concerning their own children in a neonatal unit. Strauss and Glaser's constant comparative method was used for the analysis. The findings seem to indicate that these parents have an extremely tough life. Their relationships with their children are somewhat ambivalent. The children are very dependent on their parents, who in some ways both love and hate them. Too little rest and sleep and feeding the children are the most serious problems. The parents require respite facilities. The home can seem like a prison, from which it is impossible to escape. It is like having a baby who never grows up.