“I felt like I was missing ‘me’": Long-term experiences of intrapersonal loss, grief, and change in adults with an acquired brain injury

Abstract

Experiences of loss and change following acquired brain injury (ABI) are frequent and multi-contextual, yet the long-term experiences of people with ABI are not well understood. This study explored the experiences of intrapersonal loss, grief and change in people with ABI, a decade after their injury. Twelve adults with ABI were interviewed 10–13 years post-injury. Using interpretative phenomenological analysis, we identified four overarching themes: a dawning realization of the impact of injury; loss of personhood; loss and liminality; and learning to live with loss and grief. Our findings indicate that in the decade following ABI, people continue to develop awareness of the impact of their injury and experience oscillating acceptance towards enforced changes. Participants reported a diminished sense of agency and autonomy in how they were perceived by and interacted with following injury. Additionally, identity may be lost, suspended, and renegotiated. Findings suggest dynamic, active, and flexible coping strategies that continue to be present over the long term. Considering the persistent nature of the injury and the evolving needs of the individual, a longer term view of rehabilitation outcomes may be required, contextualised by relational and intrapersonal challenges that may present over the longer term.