Coping with PKU: results of narrative interviews with parents

Abstract

Eleven parents of 8-year-olds suffering from PKU were interviewed about their experiences with the disease. The narrative interview method was selected in order to expose the problems from the parents' angle without influence through expert prompting. On being notified of the diagnosis after birth, the parents were extremely shocked and went through emotional crises and adjustment problems during the first 12 months. The narcissistic hurt of not having a healthy child was compounded by problems with dietary technique. The behaviour and development of the children themselves were no particular problem. Handling the diet ranked highest among the problems raised by the parents. It turned out that all the parents did not always apply the diet strictly and deviated from it. The underlying reason was a compromise between an ideal attitude towards the diet with the accompanying experience of loss and guilt, and the goal of undisturbed personality development of the child. Discussion groups with therapeutic support are suggested as a way of relieving the burden on the parents.