The experience of living with a family member with challenging behavior post acquired brain injury

Acquired brain injury (ABI) can be a sudden, dramatic, and, sometimes, fatal event that instantly disrupts the lives of the patients and their families. Healthcare professionals and families are being confronted with the long-term effects of ABI. This article presents a descriptive phenomenological study that aimed to explore the families' meaning of living with the cognitive, emotional, and behavioral sequelae of ABI survivors. In-depth, face-to-face, semistructured interviews were conducted with a purposive sample of five family members of ABI survivors who displayed challenging behavior. Data collected were analyzed using A. Giorgi's (1985) descriptive phenomenological method of data analysis. Analysis and descriptions from the five participants revealed seven interrelated themes; one theme described the challenging behaviors of the people with ABI, and six themes described the experiences of the family members (emotional turmoil that these behaviors engendered, a profound sense of loss, concerns for their future and for the future of the person with ABI, a sense of loneliness, the effect on family functioning, and the family members' coping and adapting to the behaviors). This study contributes to healthcare providers' understanding and knowledge of families' experiences of living with a person with ABI and their cognitive, emotional, and behavioral sequelae and supports the need for continued research in this area.