Development of a theoretical framework describing relatives' involvement in palliative care

The present study is based on four earlier studies in which the authors classified the relative's involvement in palliative care into different categories and described the involvement as "involvement in the light" or "involvement in the dark".

The aim of the study was to develop a theoretical framework concerning the involvement of relatives based on an in-depth analysis of the results of the four earlier studies.

Walker & Avant's (1995) strategies for theory construction were used for development of the framework. A number of different concepts, assumptions and statements about relatives' involvement were penetrated in an in-depth analysis.

From the concepts two theoretical "blocks" of the relatives' involvement were developed and these constitute the foundation for the framework. One is based on concrete descriptions of the concepts "to know", "to be" and "to do". The other describes how the concepts of "involvement in the light" and "involvement in the dark" differ. Factors that promoted involvement in the light were professional care based on humanistic values, a stronger sense of coherence on the part of relatives, an appropriate illness trajectory, and other available resources. The opposite was the case for those who were involved in the dark. Five assumptions successively developed which together form the theoretical framework.

An important conclusion that can be of importance in palliative care is that the manner in which the staff act toward the patient and relatives influence relatives' possibilities for involvement, patients' possibilities for an appropriate death, and the possibilities the staff have to give good care.