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The Situation of Relatives and their Involvement in Palliative Care

Issue: Vol.2, No.2 - January 2003

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Article Type: Manuscript

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  1. Dr Birgitta Andershed
    Department of Caring Sciences, Orebro University

This article summarises a number of studies in palliative care with the following primary aims; to describe and obtain increased understanding for the relatives' situation; to analyse the involvement of the relative; to analyse obstacles to and possibilities for the relatives' involvement; and to develop a theoretical framework of understanding concerning their involvement. The main results from the summarised studies show that the relatives' involvement in the patients' care could be classified into three main categories: "to know", "to be" and "to do". The studies show that the relatives' involvement can be described as either involvement in the light or involvement in the dark. Involvement in the light and in the dark illustrates the relatives' understanding of the situation, their possibilities for involvement, ad the attitude of the staff towards the relatives. A pattern which was observed was that those relatives who were involved in the light described having been met with respect, openness, sincerity, confirmation, and connection, while the opposite was the case for those who were involved in the dark. A surprising result was that the time between the patient?s cancer 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. Factors that promoted involvement in the light were professional care based on humanistic values, 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. The result from the studies were summarised in five assumptions which together form a theoretical framework of understanding for the involvement of relatives.

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