A traumatic brain injury (TBI) extensively affects the injured person's daily life. Research based on the perspectives of people with TBI can increase understanding of the challenges they face and the possibility of supporting them in managing their lives. The aim of this study was to elucidate the meaning of living with TBI as narrated by the people with moderate or severe TBI. The data were collected by means of qualitative research interviews with 12 participants who had lived with TBI for 4-13 years. A phenomenological hermeneutic method was used to interpret the transcribed interviews. The study showed that people with TBI had 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. Participants' 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 TBI seems to mean 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. Participants seem to be quite alone in their suffering and need more support from healthcare professionals.
Questions or comments about this article may be directed to Eija Jumisko, MSc RN, by phone at 46 921 75854 or by e-mail at Eija.Jumisko@ltu.se. She is a doctoral student in the division of nursing, department of health sciences at Luleå University of Technology.
Jan Lexell, MD PhD, is a professor in the department of rehabilitation at Lund University Hospital, associate professor in the department of community health at Lund University, and adjunct professor in the department of health sciences at Lutea University of Technology.
Siv Söderberg, PhD RNT, is an assistant professor in the nursing department of health sciences at Luleå University of Technology.
© 2005 American Association of Neuroscience Nurses