A wish to be near experiences of close relatives within intensive care from the perspective of close relatives, formerly critically ill people and critical care nurses

Abstract: The overall aim of this doctoral thesis was to describe the experiences of close relatives within intensive care, from the perspective of close relatives, formerly critically ill people and critical care nurses. Data were collected by means of qualitative research interviews with close relatives of people who had been critically ill and cared for in an intensive care unit (ICU) and with the people themselves. Data were also collected by means of focus-group discussions with critical care nurses. Collected data were analysed using qualitative thematic content analysis and phenomenological hermeneutic interpretation. This thesis reveals that it was a frightening experience for close relatives to see the person critically ill in an unknown environment. It was important to be able to be near the ill person. Showing respect for and confirming the dignity of the ill person were essential. The uncertainty concerning the outcome for the ill person was hard to manage. Close relatives wanted to feel hope, even though the prognosis was poor. The presence of close relatives was taken for granted by critical care nurses. Information from close relatives made it possible for critical care nurses to provide personal care for the critically ill person. Critical care nurses supported close relatives by giving them information and being near. Close relatives were described as an important but demanding part of the critical care nurses' work. People who had been critically ill had felt their close relatives' presence. Through the help of close relatives they felt they were understood and safe. Close relatives made it possible for them to do various things, which were appreciated, but they also engendered feelings of guilt. They realized their own, and the close relatives' significance, which gave them the power to continue the struggle. The possibility for people who had been critically ill, and their close relatives, to return together to the ICU for a follow-up visit after discharge and talk about what happened during and after their stay in the ICU was appreciated. Receiving explanations and being able to discuss one's experience were valuable. Meeting the ICU staff again enabled them to express their gratitude for their work, to give opinions about the care and to suggest improvements. This thesis shows that the critically ill person is the focus of close relatives' existence. The uncertainty of the time causes close relatives' suffering and they felt vulnerable. To be able to be close to the critically ill person, to be allowed to participate in and receive explanations about what was happening and why, to be met by dignity and to be able to keep hope alive are all prerequisites for enduring a radically changed everyday life which close relatives experience when someone they love is, or has been, critically ill. The crucial challenge is how these needs can be met by the staff of the ICU.