Imparting the diagnosis of life threatening illness in children

Abstract

The parents of children with life threatening or terminal illnesses were interviewed about their experiences of the way in which they were told the diagnosis. The interview was piloted on 25 families and then administered in a semistandardised manner to a further 45 families. Parents were asked how satisfied they were with the initial discussion about the diagnosis: 23 families were satisfied with how much information they were given; 22 with the information concerning prognosis; 20 with the pacing of the information; 33 with who was present; 32 with arrangements for follow up; and 26 were satisfied overall with the initial discussion. Clear patterns emerged about which elements of the discussion parents appreciated or resented. For example, they valued an open, sympathetic, direct, and uninterrupted discussion of the diagnosis in private that allowed sufficient time for them to take the news in and for doctors to repeat and clarify information. They disliked evasive or unsympathetic brief interviews. All parents remembered vividly the manner in which the diagnosis was imparted, and some were still preoccupied with this many years later. Analyses were carried out to test the possibility that reports of satisfaction and dissatisfaction were a function of current depression and anxiety, but no evidence was found for this.