A family's perspective on living with a highly malignant brain tumor.

The purpose of the study is to describe what it like to live with a highly malignant brain tumor from a family perspective. It is a qualitative study in which 3 families, 3 patients, and 5 next of kin have described their experiences in 15 interviews. The study is prospective, with interviews occurring 2-3 weeks after surgery and 3 and 6 months after the onset of the illness. Inductive content analysis has been employed. The results indicate that when a highly malignant brain tumor is diagnosed, the effect on the family is devastating and there is a state of crisis. Characteristically, there is distancing and a sense of helplessness. The members of the family live from day to day in a state of constant anxiety and fear of losing the patient. The affliction limits the patient's capacity regarding activities of daily life, which increases the burden of the next of kin. The next of kin attempt to cope with their grief by occupying themselves with practical tasks and activities that they believe are meaningful. The family members have only good words to say about their encounter with healthcare staff and about the information given. Negative information that the family have not asked for can cause a long period of frustration and anxiety, and they believe that their hope has been taken away from them.