No abstract

The data revealed experiences of existential loneliness with the impending death as a primary source. Experiences of being alone in "a world of one's own" were common. The changes in everyday life and the increasingly restricted social interaction because of the illness meant that the patient partly lost the protection against isolation that the spirit of community normally provides. Other situations that had a triggered the existential isolation were, for example, when a patient in need of support was left alone, when he or she was treated disrespectfully or in a way that made him or her feel invisible, or when people avoided contact because of uneasiness or fear. Changes in one's own body and mood gave rise to feelings of loneliness and unfamiliarity toward oneself. When a staff member touched the patient's body in a nonempathic way, this could induce feelings of being treated like an animal.

When a person is diagnosed with a severe disease, it seems plausible that existential questions and death anxiety are easily intensified. The aims of this study were to explore whether this is the case, to what extent patients and their next of kin experience death anxiety, and how these experiences are expressed. Following a purposive sampling technique, 20 patients with brain tumours and 15 of their next of kin took part in interviews. A content and context analysis were performed using a hermeneutic approach, in order to identify and analyse main categories. Six main categories common to patients and their next of kin emerged during the process: (1) emotional reactions that could be related to death anxiety and included general anxiety, anguish, sadness, hope and despair; (2) existential fear, existential anxiety and existential pain; (3) contradictions; (4) trigger situations; (5) coping strategies related to death anxiety; and (6) new values for life. Besides these categories, a further category emerged, experiences characteristic of the next of kin. The study shows that both the patients and their next of kin are preoccupied with existential thoughts and death anxiety. The problems are easily overlooked as the death anxiety is not always expressed directly. Staff need to be more aware of these situations in order to provide existential support.