Striving to become familiar with life with traumatic brain injury : experiences of people with traumatic brain injury and their close relatives

Abstract: The overall aim of the doctoral thesis was to elucidate the meaning of living with traumatic brain injury (TBI) for people with TBI and for their close relatives. The data were collected by means of qualitative research interviews with people with moderate or severe TBI (I, III, IV) and their close relatives (II, III), and were then analyzed using a phenomenological hermeneutic interpretation (I, II, IV) and thematic content analysis (III). 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 treated with respect, and finding a new way of living. Feeling well, for people with moderate or severe TBI, means that the unfamiliar life with TBI has become familiar. This included finding strength, regaining power over everyday life, being close to someone and being good enough. People with TBI felt well when they reconciled themselves with the circumstances of their life, that is, they formed a new entity in that life where they had lost their complete health. 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 and close relatives and other family members gives them the strength to fight. People with TBI and their close relatives had experiences of being avoided, being ruled by the authorities, being met with distrustfulness and being misjudged. They also searched for answers and longed for the right kind of help. People who listened to them, believed them and tried to understand and help them were appreciated. This thesis shows that people with TBI and their close relatives experienced deep suffering where they struggled between evil and good, suffering and desire. They had moments of hopelessness but they strived to become familiar with a life with TBI. Their suffering was alleviated when they were able to understand their experiences, experienced love and had someone to share their suffering with, and felt satisfaction and happiness. People with TBI and their close relatives have experiences of suffering of care. It is crucial that they meet professionals who have knowledge about TBI and really understand the suffering it causes for them as individuals and as a family.