Living Life After Traumatic Brain Injury: Phase 1 of a Longitudinal Qualitative Study.

OBJECTIVE: To explore what helps and hinders recovery and adaptation after disabling traumatic brain injury (TBI) and make recommendations for improving service responsiveness. DESIGN: A longitudinal qualitative descriptive study across all TBI severities. SETTING: Community. PARTICIPANTS: Forty people with TBI, and 22 significant others, 6 to 9 months following a TBI. MAIN MEASURES: Semistructured interviews, analyzed using qualitative description, focused on (a) key areas of importance or concern and (b) strategies or actions that people found helpful or that hindered recovery. RESULTS: Traumatic brain injury produced a complex set of challenges in keeping up with life, and understanding what having a TBI means for, and to, me. This period encompassed a tangled fit and misfit in life as brain injury did not occur in isolation. People had to actively change some aspects of life and yet allow other changes to happen. Valued supports from others included being looked out for and having someone to help drive the process. CONCLUSION: Improved services delivery and better outcomes may result if we respond to the person within his or her context; listen, believe, and acknowledge the person's story through our actions; and avoid assumptions about aspects of life that mean most to people and who/what may help best.