Involvement of relatives in the care of the dying in different care cultures: Involvement in the dark or in the light?

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Abstract
The aim of this prospective study was to increase existing knowledge about the involvement of relatives in care of the dying and to shed light on the relatives' sense of coherence. Six relatives were followed via qualitative interviews during the patients' final period of life and after their deaths. The patients died in different forms of care: surgical department, nursing home, inpatient hospice ward, and at home. What the relatives had in common was that they had, in different ways, followed the patient from the first symptoms, through different forms of care, up until death. Some participated very actively in the care. Relatives' involvement in care can be described as involvement in the light or involvement in the dark. Involvement in the light is based on a trusting relationship between the family and the staff. Involvement in the dark is based on insufficient interplay and collaboration, in which the relatives are not seen or acknowledged by the staff, but instead must grope around in the dark when they try to support the patient. Rapid course of illness can be a risk factor for involvement in the dark. It seems that the relatives' sense of coherence was an important factor enabling them to be involved in the light. Humanistic care can constitute a buffer, thereby increasing the possibilities for relatives to be involved in the light.