ABSTRACT

The purpose of the thesis was to describe the effects of a child’s end-of-life care to the family. The main focus was especially in the parents and their experiences of the end-of-life care. The aim of the thesis was to resolve how the child’s end-of-life care affects the family’s life. Children’s palliative care hasn’t been thoroughly examined. One aim of the thesis was also to increase knowledge of the subject so that children’s end-of-life care could be improved. Qualitative research method was used in the thesis.

The material for the thesis consisted of biographical literature. The authors of the literature were parents of children who received end-of-life care. The material was limited to publications between years 2007 and 2011. Another limiting criterion for the material was that the end-of-life care had taken place in Finland. In the publications the age of the children varied between 0 to 17 years. The material was analyzed by inductive content analysis.

The outcome of the study was that the child’s end-of-life care affected in various ways in the family’s life. The child’s severe disease changes the family’s everyday life and its time usage, hobbies and internal relationships. The results show that from the family’s point of view a successful child’s end-of-life care contains cooperation, interaction, support and proactive preparation for the upcoming event.

The results of the thesis indicate a course of actions that should be noticed in the child’s end-of-life care. Professionals who work with mortally ill children and their families should internalize this course of actions in their work. By paying attention to these actions the professionals ensure the family to have a whole and precious memory of the child’s palliative care.