Traumatic brain injury (TBI) is a significant public health concern, with moderate to severe injuries often resulting in long-term challenges that affect daily functioning, social participation, and emotional well-being. Individuals with moderate to severe TBI frequently experience diminished productive activity (e.g., difficulty regaining employment), strained family and social relationships, and reduced community engagement (e.g., decreased participation in social and recreational activities). Post-injury participation challenges may also extend beyond social isolation to affect physical and emotional health. Weight gain is a common post-injury complication, increasing risk for chronic conditions such as diabetes. Depression and emotional dysfunction are also highly prevalent and closely linked to reduced social and community participation.
These realities underscore the importance of interventions aimed at helping individuals with TBI resume meaningful activities, or identify new ones, to enhance quality of life and prevent long-term negative health consequences.
Gaining a More Holistic View of the Lived Experiences of Individuals with TBI
Understanding the nuances of post-injury participation is critical to developing effective treatments. This question is at the heart of a new Albert Einstein Society–funded research study led by Amanda Rabinowitz, PhD, and postdoctoral fellow Allie Tracey, PhD, in the Brain Injury Neuropsychology Laboratory at Jefferson Moss Rehabilitation Research Institute.
Dr. Tracey brings deep expertise in ecological momentary assessment (EMA) to this work. During her doctoral training, her dissertation focused on a novel mobile EMA platform called Recovering Concussion Update on Progression of Symptoms (ReCoUPS). ReCoUPS allows clinicians to remotely monitor concussion symptoms in real time, providing a dynamic and ecologically valid picture of recovery following mild TBI. Her dissertation demonstrated the power of mobile technology to capture symptom fluctuations as individuals move through their daily lives—advancing beyond traditional, retrospective self-report methods.
Now, Dr. Tracey is extending this innovative approach to individuals with moderate to severe TBI. By adapting and expanding these methods, Dr. Tracey is advancing the lab’s efforts to capture real-world, moment-to-moment experiences in a population that has historically been underrepresented in intensive, longitudinal mobile health research.
In the current study, we are interested in understanding how people with moderate to severe TBI spend their time—how often they get out of the house, connect with others, and how they feel—compared to healthy matched controls. We are also examining contextual factors that may influence participation and emotional states. Traditional research has relied heavily on retrospective self-report measures to assess social functioning and emotional health. While valuable, these tools cannot capture how a person’s physical and social environments shape their experiences in real time.
To address this gap, the study leverages ecological momentary assessment (EMA), typically implemented via smartphone applications, to collect real-time data on symptoms, behaviors, and context as individuals navigate daily life. Participants first complete in-person assessments of cognitive functioning, quality of life, mood, and life satisfaction. They then download the LifeData™ smartphone app and respond to prompts about mood, social interactions, and daily activities five times per day for 20 days.
