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.

The results of this study indicate that a multidisciplinary team is needed for assessment and treatment of the different problems in patients with LGG. Furthermore, special attention should be paid to patients who use coping by escape-avoidance, as this is associated with emotional distress.

There is a paucity of knowledge for health-care professionals who come into contact with next of kin of persons diagnosed with low-grade gliomas. Therefore, the aim of this study was to explore the experience of being the next of kin of an adult person diagnosed with a low-grade glioma. Twenty-eight next of kin of persons with a low-grade glioma were interviewed. The data were subjected to qualitative content analysis. A quantitative data analysis was added to explore how the themes from the qualitative analysis occurred among different next of kin. Four main themes emerged: Extremely stressful emotions, Being invisible and neglected, Changed relations and roles, and Enabling strength in everyday life. The first of these occurred mainly in the early period of illness. This theme was especially predominant in the case of the patient's parents. The theme of Changed relations and roles occurred more often among next of kin some years after the person's diagnosis. The most statements occurred in all four themes were by female next of kin. Many next of kin requested emotional support for themselves and indicated that it is important that health-care staff should not forget them.