Living with serious chronic illness from the perspective of people with serious chronic illness, close relatives and district nurses

Abstract: The overall aim of this licentiate thesis is to elucidate the meaning of experiences of serious chronic illness as narrated by people with such illness (n=10), close relatives (n=14) and district nurses (DN) (n=10), that is from an insider viewpoint. Data was collected through narrative interviews that were analysed using a phenomenological hermeneutic interpretation. People living with serious chronic illness live a life hovering between suffering and enduring but which also includes a cautious process of reformulation of the self. Suffering emerges, first and foremost, from pain, fatigue, loss of strength and independence. Central to the illness experience is a feeling of loneliness and existing in a state of tension between hope and despair about survival. The experience of being involved in a struggle for normalcy by integrating changes and by learning to live a new kind of daily life at home is also salient in the narratives. Close relatives living with people with serious chronic illness live a life with reduced personal freedom and an increased sense of responsibility for the care of the ill person. The relatives struggle with the ethical demand that they gain the strength to manage this responsibility, which requires their total involvement in living with the ill person's pain, fear, anxiety and suffering. Feelings of loneliness arise relating to the silence of the home; the illness influences their capacity to converse about mutual memories and everyday happenings. The death of the ill person creates immediately a huge emptiness and a lack of mission and meaning in life. For DNs serious chronic illness means encounters with the people concerned in a close relationship. They share both the experiences of the ill person and their close relativesas well as their understanding of the illness. This wakes DNs available to alleviate and console them by being entirely present and by staying with them in in communion in difficult situations. The comprehensive understanding of this study concerns togetherness, throug sharing an inter-subjective world and being in communion.