Striving to become familiar with life with traumatic brain injury:experiences of people with traumatic brain injury and their close relatives
- Författare
- Jumisko, Eija
- Titel
- Striving to become familiar with life with traumatic brain injury:experiences of people with traumatic brain injury and their close relatives
- Utgivningsår
- 2007
- Rapportnummer
- 2007:39
- Utgivare
- Luleå university of technology
- Sammanfattning
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