Att vara nära anhörig i livets slut : Delaktighet i ljuset - delaktighet i mörkret

Sammanfattning: The aims of the present dissertation were: 1. To describe how the establishment of an inpatient hospice ward affected dying cancer patients' utilisation of care at a Medical Centre Hospital; 2. To analyse the involvement of the relative in the care of gravely ill cancer patients in different care cultures; 3. To analyse obstacles to and possibilities for relatives' involvement: 4. To develop a theoretical framework of understanding concerning the involvement of relatives. For the first aim, data was collected via register studies. The basic research design for the other aims was the hermeneutic method.The results show that during the first three years 315 patients died at the newly opened hospice ward. The year before the ward opened 82% of the cancer patients died in acute care compared with 59% during the third year of the hospice ward.The involvement of relatives in the patients' care was categorised into three main categories: "to know", " to be" and "to do". The studies show that the involvement can be described either as involvement in the light or involvement in the dark. Involvement in the light and in the dark illustrates relatives' understanding of the situation, their possibilities for involvement, and the attitude of the staff toward the relatives. Factors that promoted involvement in the light were a humanistic attitude of the staff, a stronger sense of coherence of relatives, an appropriate course of illness, and other available resources such as other relatives and one's own health.A surprising result was that the time between diagnosis and death was three months or less for 49% of 67 patients. In those cases where the course of illness was short there was no time to lose, and it was important that caring delays were avoided.The results from the substudies were summarised in five statements, which together form a theoretical framework of understanding for the involvement of relatives.