The experiences of treatment from other people as narrated by people with moderate or severe traumatic brain injury and their close relatives

Purpose. The aim of this study was to describe the treatment from other people as experienced by people with moderate or severe traumatic brain injury (TBI) and their close relatives. Method. Twelve people with moderate or severe TBI and eight of their close relatives were interviewed. The interviews were analysed using thematic content analysis. Results. The results were described by the means of two themes: being excluded and missing confirmation. 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. Conclusions. This study showed a lack of treatment which promotes well-being of the people with TBI and their close relatives. They experienced bad treatment also from authorities. Therefore, we emphasize that authorities should continuously reflect on how to make their practice a place which promotes dignity. Treatment of people with TBI and close relatives may be improved by increased knowledge about TBI, living with it and being a close relative to a person with TBI. This is a challenge to health care and rehabilitation professionals.