Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study


The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery—helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury–specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery.

Journal of Participatory Medicine