Comprehensive Feedback on User Experiences With Brain Injury Identification Cards

Purpose/Objective: Brain injuries are often “invisible” injuries that can have lifelong consequences including changes in identity, functional independence, relationships, and reduced participation in daily activities. Survivors of brain injury experience stigma and challenges related to the misattribution of symptoms to other causes that are significant barriers to recovery and adjustment. Changes in policy and other large-scale interventions are cited as an underexplored, yet critical path to reducing the impact of brain injury. The present study sought to comprehensively characterize the impact of one such initiative—Brain Injury Identification Cards—among survivors to further refine the resource. Research Method/Design: In this cross-sectional qualitative focus group study, we recruited 16 individuals with a history of brain injury via email listservs of individuals who registered for a Brain Injury Identification Card. We used rapid data analysis with a hybrid of deductive and inductive analytic strategies to identify themes within a priori domains. Results: We extracted themes within four domains: (a) process and reasons for obtaining cards; (b) overall impressions of the cards; (c) uses of the cards; and (d) feedback and proposed changes. Participants described the process of obtaining cards as straightforward and shared wide-ranging benefits across domains, including improving survivors’ sense of safety, self-advocacy, and ability to participate in daily activities. Conclusions/Implications: Findings highlight the utility of Brain Injury Identification Cards for improving community understanding of brain injury symptoms and how injury-related challenges may manifest in daily life.