Being forced to live a different everyday life : the experiences of people with traumatic brain injury and those of their close relatives

Abstract: The overall aim of the licentiate thesis was to elucidate the meaning of living with traumatic brain injury (TBI) in people with TBI and their close relatives. The data were collected by means of qualitative research interviews with people with moderate or severe TBI (n=12) and their close relatives (n=8), and were then analysed using a phenomenological hermeneutic interpretation. This study shows that living with moderate or severe TBI means living with a perpetually altered body that changed the whole life and caused deep suffering, where feelings of shame and dignity competed with each other. People with TBI lost their way and struggled to achieve a new normalcy. Losing one's way included experiences of waking up to unknown, missing relationships and experiencing the body as an enemy. Struggles to attain a new normalcy included searching for an explanation, recovering the self, wishing to be met with respect, and finding a new way of living. Living with a person with moderate or severe TBI means that close relatives fight not to lose their foothold when it becomes essential for them to take increased responsibility. They struggled with their own suffering and compassion for the person with TBI. Close relatives' willingness to fight for the ill person derived from their feeling of natural love and the ethical demand to care and be responsible for the other. Natural love between the person with TBI, close relatives and other family members gave them the strength to fight. The comprehensive understanding revealed that people with moderate and severe TBI and their close relatives were forced to live a different everyday life where enduring uncertainty, chronic sorrow and loneliness, but also retaining hope were all present. They were rather alone in their suffering and their need for help, both as individuals and as a family, remained great even many years after the injury.