BACKGROUND: Exploring the perceptions of individuals with traumatic brain injury (TBI) towards their brain injury recovery across the continuum of care may offer insights to support engagement with rehabilitation services. Illness narratives are a potentially valuable avenue for examining perceptions of recovery that may influence engagement.
AIMS: The aim of this study is to explore the perspective of individuals with severe TBI towards their communication, brain injury and recovery experiences at 6 months, 1 year and 2 years post-injury.
METHODS & PROCEDURES: Discourse samples were obtained from 12 participants with severe TBI at 6 months, 1 year and 2 years following injury. A standardised protocol was used to elicit responses relating to perceptions of communication, the brain injury narrative, and perceptions of recovery facilitators. A thematic analysis of the discourse samples was completed.
OUTCOMES & RESULTS: Three overarching themes were identified: experiences of communication recovery are diverse (Theme 1), varied experiences of recovery and rehabilitation (Theme 2), and continuous and lifelong journey of recovery (Theme 3). Primary communication concerns included presence of anomia, dysarthria, conversational topic difficulties, impacts of fatigue and memory difficulties. Illness narratives revealed the importance of re-establishing a sense of self and the perceived importance of a strong social network post-injury.
CONCLUSIONS & IMPLICATIONS: The varied nature of communication challenges and recovery after TBI highlights the need for holistic, multidisciplinary support as well as inclusion of family and friends in the recovery process. Social communication intervention is a perceived priority area for individuals with TBI. Illness narratives may also play a valuable role in therapy and help to shape post-injury identity. Managing the impacts of fatigue on communication and encouraging individuals to take ownership over their recovery and treatment may also help to improve patient outcomes. Supporting individuals to construct positive brain injury narratives that reaffirm a sense of self and include perspectives of family and friends may offer a potential future avenue for rehabilitation. Tailored but flexible, team-based service delivery models for individuals with TBI that span from acute to long-term care are warranted. WHAT THIS STUDY ADDS?: What is already known on this subject Communication recovery from traumatic brain injury (TBI) is complex and multifaceted. The perceptions of individuals with TBI toward their communication recovery is largely unknown. To establish rehabilitation services that meet the needs of these individuals, we need to understand how they experience communication recovery. What this paper adds to existing knowledge Social communication interventions were perceived as a priority for intervention by individuals with TBI. Fatigue was identified as perceived barrier to communication recovery. Taking ownership over one's recovery process was revealed as a facilitator of recovery. Illness narratives were found to strengthen post-injury identity over time. What are the potential or actual clinical implications of this work? Speech pathologists should prioritise social communication interventions and fatigue management for communication. Facilitating ownership of the recovery process and offering long-term supports are key aspects of treatment. Supporting positive illness narratives as part of treatment may facilitate post-injury identity construction.